Symbol
Symbol
Singing Notes Photos Symbol Memoriam
This
is the symbol for colorectal cancer awareness. It was recently adopted by
all colorectal cancer societies
along with the phrase
"Preventable, Treatable, Beatable."
In July, 2003, I heard the devastating diagnosis that I have advanced colon cancer. Since then I have lived with the terrible consequences of this disease; the difficult surgery, the chemotherapy, the symptoms and complications. There are other challenges too; keeping the faith, hoping where there is no hope, fighting with courage and humor. I have met many brave people who face these same challenges which can bring out the worst or the best in a person.
And the kicker is, this cancer is indeed preventable. With
timely screening, a colonoscopy by age 50 at the
very latest, many cases can be treated effectively and even cured in the early stages.
It is my most fervent wish that everyone who is at all at risk (family history,
age, colitis, dumb luck) make that vital
appointment for a colonoscopy and avoid becoming dangerously ill.
Remember, denial kills. I pray for you every night. Elizabeth Parcells
March 30, 2005 Radio Interview
American Cancer Society Colon Cancer Alliance Medicine Net Information ACOR Assoc. of Cancer Online Resources Colorectal Cancer Coalition
Date: Fri, 19 Nov 2004 18:05:46 EST
From: Elizabeth Parcells
Subject: Re: Avastin and It's Side Effects
Hello all,
I'm new to the board. So here goes.
I too have noticed additional hoarseness since beginning Avastin last March. I
find it troublesome only because I am a singer, but the usual remedies seem to
help, hot tea with lemon and honey, some careful vocalizing and deep breathing
to move the phlegm off the cords, and stuff like that. I did not think the Avastin was causing the problem necessarily, but after reading the posts, I
guess it is. I asked my doctor at one point and he suggested a special mouthwash
for sores and hoarseness, but I like my hot tea better.
I am on Avastin, 5FU and Leucovorin for stage IV colon cancer. I was diagnosed
in July 2003, had surgery that August and started chemo on FOLFAUX in October
2003 and have been on it ever since with only two interruptions when I got too
"toxic." I have had to deal with nausia, vomiting, dehydration, fever spikes,
infections, a DVT (deep vein thrombosis) resulting in pulmonary embolisms and
the *&%$# blood thinners to control them. I have been in the hospital twice for
the side effect related issues. Chemo is no fun!
Otherwise I am in good health and feel lucky not to have pain or other
debilitating conditions. I do have mets to the liver and elsewhere, but they
don't hurt yet. So far, I am doing pretty well, considering, and am
grateful.
God bless those of you who have these serious challenges. I pray God will
give each of us what we need to survive each day.
Regards, Elizabeth
----------------------------------
Date: Tue, 23 Nov 2004 19:23:48 EST
From: Elizabeth Parcells
Subject: Re: FDA approves FOLFOX for Stage III disease
11/23/2004
12:04:02 PM EST, theyerlp@ writes:
My husband, Dennis, will be starting his treatment (FOLFOX6) beginning Dec.1. We've received some encouraging news from another list member as far as
side-effects - but I'm asking for anyone on the list who is receiving FOLFOX to
reply back with any advice about the chemo and\or side effects. Like so many of
the "newbies" - we've never been down this road before - can I sit with him when
he gets the treatment? And speaking of the "road" - I'm not sure if I should
take pillows or blankets for the drive home? (approx. 2 hours) My husband's
attitude is so good - someday I feel guilty because I'm not always "up". thank
you all for this LIST! I have learned so much in a very short 5 weeks! Thank you
- Pat - wife of Dennis, dx 10/16/04, Stage III, 17 of 23 nodes positive.
Dear Pat, I am Elizabeth, dx July, 2003, stage IV, sigmoid tumor with mets to
liver, pelvis and lungs, but clinically doing exceptionally well!
I started my FOLFOX treatment in October 2003 following a six week recovery
period from surgery. At first I had a hard time with nausea and vomiting. It
seems in retrospect that I did not alter my activity level to suit the chemo and
thus caused some of the problems by: over-doing it, not drinking enough water
and not adjusting my eating correctly. The Oxaliplatin also causes some
sensitivity to cold which was annoying but didn't set me back much.
As I went along I learned to rest thoroughly for at least three days after
chemo. The first day, I came home from treatment and just went right up the
stairs without thinking and found I had to throw up right then! So don't go
jogging after treatment! Keep the Immodium and Zofran handy at all times and
take more Immodium than prescribed on the package when there is severe
diarrhea
. Take the Zofram at the first sign of nausea if not sooner. Drink plenty of
water, eat Jell-O or anything else you can do to keep your fluid coming in. Stay
away from raw or hard-to-digest foods or foods that cause gas. Eat small
portions and eat slowly!
If you don't believe me or the folks advising you, you'll have to learn the hard
way! LOL like I did. You just don't realize right away the limitations
within which you have to live as a chemo patient.
These days, I am feeling quite okay, much better than a year ago. So yes, it can
improve. Your husband is stage III and may only get treatment for a prescribed
period of time. As a stage IV, I have to live with the chemo indefinitely
so I have found ways to tolerate it better.
Yes you can accompany your husband to the chemo treatment room and sit with him
there. Take reading material or your favorite knitting project in case he tends
to sleep thru treatment. I find the Anzemet they give before treatment makes me
sleepy. If he has any problems during treatment, call a nurse. They are there to
help. At first the treatments should go fine. Later when the chemo has built up
in his system he may notice side effects worsening. Be sure to let the doctor
know in detail how he is reacting and feeling. Sometimes the doses can be
adjusted. He will probably get the steroid Decadron before treatment to promote
healing and help him deal with the side effects better. I found it helpful at
first, but later when I felt better, I decided I could do without the steroids
and have dropped that med. Do what he feels is best for him.
As far as the road, yes take pillows and blankets since he may feel like resting
and will want to stay warm in the car. If he gets car sick, keep a container for
him if he has an "oops." It might be advisable to stop if he really feels
nauseous while traveling. Wait and see. This chemo side effect thing
can be unpredictable so just be ready.
There is lots more I could tell you , but I don't want to "hog" the board. Feel
free to email me if you have specific questions. Hope all goes well with you
both, and best wishes!
Elizabeth
------------------------------------
Date: Sat, 27 Nov 2004 10:38:37 EST
From: Elizabeth Parcells
Subject: Re: clinical trial eligibility
I would like to comment on the messages below on the merits and challenges of
clinical trials from my own point of view as a patient with advanced cancer:
I understand the disappointment when treatment options dwindle, since options
always represent hope. But even when treatments cannot deliver us, there is
always room to hope for the right things. Thanks to Kate and the other
list managers for helping so many of us with their understanding and expertise.
When my colon cancer was diagnosed in July 2003 at stage IV, I was otherwise in
very good health and 51 years old. At the very first visit with my oncologist we
discussed clinical trials. I was a good candidate because I had had no treatment
other than surgery and my cancer was considered incurable due to mets to the
liver and beyond. I jumped at the chance to try a new treatment right away. It
was an experimental pill version of an anti-angiogenesis treatment in a trial
sponsored by Novartis.
Upside: I was realistically optimistic that I was "part of the solution" to
cancer research for the future, that I personally had a 50% chance of being in
the experimental group receiving a cutting edge new treatment, and that there
was reason to hope for better results for me.
Downside: The treatments could only be given and monitored at one location,
which nailed my feet to the floor. Worse, I had a very bad reaction to the new
drug and had to drop it. I continued with the FOLFOX treatments which were
aggressive but which I tolerated reasonably well without the experimental pill.
So much for the placebo theory! It took me some months to stabilize and "get
used" to my regular treatments.
I've now been in treatment for over a year. In the meantime, I have stopped the Oxaliplatin because of allergic reactions and begun treatment with Avastin,
which I am tolerating well. Without the constraints of a clinical trial, my
treatments can be tailored to my own needs and wants, I can take treatment at
other locations (I have had a wonderful time living in the country and getting
my chemo at the local hospital just 30 miles away) and am reasonably comfortable
and optimistic about my future. I believe my prognosis has improved.
In fact, when I spoke with my oncologist recently, he mentioned a new trial I
could try with a genetic strategy. However, we both agreed that I personally
prize my freedom to go where I want and do as I like more than the off chance
that participation in some trial might help me. The key to any treatment is
being able to tolerate it and seeing some kind of good result. Otherwise, to
He** with it!
So, although I am still an eligible "candidate," I feel I can choose against
entering a clinical trial in favor of my quality of life without feeling that I
have missed out on some silver bullet miracle. I see plainly that my treatments
are palliative, that is, intended to treat symptoms and prolong survival. Acceptance of this has given me peace of mind and the serenity to face the road
ahead with dignity and without fear. My hope is for continued good times
and that I will be able to control the cancer for a long time to come.
However, when the treatments finally do "fail" and I am in decline, I hope to be
well cared for and comfortable for the duration without heroics. I have informed
my family of my wishes and have a living will with advanced directives in place. So when my time comes, I guess I'll just cut the engines and glide in for a
smooth landing. I hope to cause as little pain to my family over this as
possible. The Good Lord in His infinite wisdom and mercy will see to the
rest.
In the meantime, life goes on.
This is my own point of view, for what it's worth. Thanks for listening.
God bless us all.
Elizabeth
11/26/2004 5:48:13 PM EST, katemm@ writes:
On 26 Nov 2004 at 15:33, Ona Nowina-Sapinski wrote: I just wanted to express
my disappointment and depression over the fact that a week ago I asked our
oncologist about clinical trials for Robert. He replied that in the shape
Robert is in now, he wouldn't be eligible for any. So, is it more often than
not that by the time you have exhausted all your options and are looking at
trials (probably Phase I or Phase II), you are no longer physically going to
meet the inclusion qualifications?
This may or may not be true. It is difficult to be part of the most mature Phase
III trials if you have already received most of the drugs and drug combinations.
In addition, many trials want to be sure that both liver and kidneys are in
reasonable condition to process drugs.
If the liver is not functioning well, it may not be able to "clear" drugs from
the bloodstream and there will be too much toxicity. The same is true for
kidneys. So trials may not admit patients whose liver or kidney function
tests are abnormal.
Many trials also look for a "performance status" of 1 or 2 to be sure that
patients will be able to withstand treatment. Finally, some trials want to
know that patients have a life expectancy of a certain number of weeks or
months.
All of these factors tend to eliminate patients who are very ill or close to
death.
Phase I trials have the least amount of known information and are only testing
safety. Whether they will be effective or not is really unknown. We
know a bit more about drugs in Phase II trials, including what a safe dosage is.
Whether this is fair to individual patients or not is difficult to judge.
It is really important to realize that clinical trials -- especially in the
early phases -- are research aimed at better treatments for future patients.
I believe strongly in the clinical trials system. It has brought us where we are
seeing better survival rates and longer lives, but I worry when patients put all
their hopes in a clinical trial basket. A clinical trial does not make a
good last resort.
I wish there was better news . . .
Kate
------------------------------
Date: Sat, 27 Nov 2004 17:00:26 EST
From: Elizabeth Parcells
Subject: Re: clinical trial eligibility
11/27/2004 4:24:25 PM EST, jaybyrd1@ writes:
This is a complicated subject with no "right" or "wrong" answer.
The recent posts that I have read on this thread have been somewhat conflicted
at best. When one is younger with small children at home to raise, their
opinion of what is best may be different than someone who is somewhat older
whose children have grown older and are independent.
Is Oxaliplatin considered "palliative" for someone with stage four disease who
is ambulatory and otherwise relatively healthy?
I don't think so.
Certainly not for the person whose liver tumors have shrunk enough while
undergoing oxaliplatin treatment to allow for a resection, and I do believe that
this has happened.
Dear Jay,
In case I was misunderstood: I rejoice for anyone who has taken Oxaliplatin and
seen their liver mets shrink! Having a shot at liver resection, a tough go, is
real hope for recovery. I encourage every patient to fight with all their might
to get treatments that offer them a chance at longer life, remission or cure. People of any age want to survive.
All of us have reasons to live.
And, oh yes, any treatment that is aimed at helping reduce or arrest the cancer
or relieve symptoms can be considered palliative or curative, depending. No
patient is denied any treatment they can tolerate because they are considered
incurable. I have never noticed a "what's the use?" attitude toward me by my
medical team. They are overjoyed and smiling each time my CT scans come back
unchanged. I am doing much better than expected, in fact.
We chose an aggressive FOLFOX regemin which I took from October 2003 until March
2004 when the Oxaliplatin started causing rashes and itching (a form of
neuropathy). Now I take the 5FU and Leucovorin with Avastin. Though there is no
"curative intent" I have been helped significantly by the treatments. I was not
lucky enough to see my tumors or mets shrink, but the "good" news is, they have
not grown. Since my mets are to both lobes of the liver and beyond, I will never
be a candidate for liver resection. So I'll take "no new progression" any
day! I am clinically in good health and enjoying life right now.
I will take any and all treatments I believe to be beneficial to me and that
Blue Cross will pay for! LOL I don't much care what the FDA says about who the
drugs are for. If my doctor chooses them for me, I'll take 'em! If I
choose not to, then so be it.
Yes, this is a complicated subject and every person must make his/her own
decisions. Every case is different. As far as my decisions for
myself go: The buck stops here.
God bless you all, Elizabeth
-------------------------------
Date: Sun, 28 Nov 2004 15:58:19 EST
From: Elizabeth Parcells
Subject: Re: hair
As to coloring hair and chemo: I was advised not to perm or color my hair during
chemo. But I wonder if a little natural henna would hurt? Just a thought...Elizabeth
-----------------------------
Date: Tue, 30 Nov 2004 10:11:56 EST
From: Elizabeth Parcells
Subject: Re: Status of My Ileostomy Reversal at 9 Months
Dear Rick,
Thanks for your story. I have a permanent colostomy from my sigmoid resection
surgery and you are right. The reasonable adjustment period is roughly a year, tho it sounds to me like after six months you were already well on your way to
recovery. In our impatient world where we have come to expect immediate results,
a year seems like eternity, but it is not. Your perseverance will inspire
and help many others.
Thanks for sharing! Elizabeth
---------------------------
Date: Tue, 30 Nov 2004 13:39:21 EST
From: Elizabeth Parcells
Subject: Re: Questions about PET scan vs. CT scan
I've been thinking about the PET scan thing too. So far I have had only CT
scans. I know already that there are tiny lesions in my pelvic area that the CT
doesn't pick up but which were seen in surgery last year. Recently my Onc
mentioned two "very small" lesions in my right lung that were running somewhat
under the radar. He said in two or three months when we repeat the CT he
would let me know if these were going to be bothersome.
I wonder if a PET scan would tell us more than we need to know. I'm stage IV and
in treatment, with systemic chemo as my only option. Since surgery and rads are
ruled out for me for various reasons, is it really necessary to know in greater
detail what tiny new lesions are coming down the road? Is there such a thing as
TMI (too much information) with cancer? Should I start or stop agonizing over
stuff I can do nothing about? Or is there something out there somewhere that CAN
be done? Or would I be subjecting myself to more pain and aggravation from new
and aggressive treatments needlessly? ...? ...? ...?
Questions we all ask ourselves and our doctors I'm sure. I can't say I know the
"correct" answer since my reactions to such questions seem to change with what
mood I'm in: Fight, coast, whatever, fight harder, search for more answers,
coast, whatever, che sera sera, fight, fight, fight, grim determination, deep,
heavy sigh.
Mind bending isn't it?
Elizabeth
-------------------------------
Date: Wed, 1 Dec 2004 00:43:45 EST
From: Elizabeth Parcells
Subject: Re: Questions about PET scan vs. CT scan
11/30/2004 11:42:31 PM EST, kimbyy71@ writes:
I have had two ct scans, one noted a small spot on my liver, but an MRI came
back that it was a fatty focal(?) I think. Before I begin my chemoradiation
regime prior to surgery my med. onc. is insisting on my getting a pet ct scan. He doesn't want to start any treatment until after he gets these results. So far
in the MRI and ct scans they have not seen anything else but my med onc. wants
to be sure and I know he specifically is looking at my lungs as well. I
was a bit annoyed with the delay, I couldn't get an appt for a scan until next
week, but boy am I glad my doc is on-top of things.
Kimberly
Dear Kimberly,
What a blessing these scan technologies really are! Even when the results are
ambiguous, a mixed blessing, the scans are miraculous diagnostic tools today
that are invaluable for managing treatment, the key to long term survival.
I don't have to imagine the bad old days only a few decades ago: the '50s and
'60's when I first had cancer. The doctors had to perform the dreaded
exploratory surgery on me twice!! They would have to cut you open for a
diagnosis because the x-rays were so poor and needle biopsies hadn't been
invented yet. It was a horror! And for what? How many cancer patients were
lost in exploratory surgery I wonder.
Nobody talks about exploratory surgery anymore! How barbaric and antiquated! Now
you just slip onto the CT scan table and they can see most of what they need to
see. No more tears! My parents waited seven years to know if my treatments had
worked. The only way to tell was that I was still alive! Today we get impatient
when we have to wait a week or two for test results! Ah thank goodness for
modern times! (I stress over test results like everyone else, believe me!)
Kimberly I am so glad your doctor is on top of things and can give you a
diagnosis right now. A weeks delay to be sure of the diagnosis is no biggie. I
hope all goes well for you. Remember to thank the pioneering doctors and
patients of the past for the wonders of today that help and save so many.
That's my pitch for the past building a better future. Elizabeth - cancer
survivor for over fifty years and counting.
--------------------------------
Date: Wed, 1 Dec 2004 00:10:12 EST
From: Elizabeth Parcells
Subject: Re: Questions about PET scan vs. CT scan
11/30/2004 10:48:33 PM EST, Franrauba@
writes:
Hi Elizabeth:
Considering your staging and results from CT scans, I would definitely fight for
a PETSCAN. It could determine if you were eligible for a trial or surgery to
eliminate any mets that could be cut out. Fran
Hi Fran,
Even tho a PET scan may be too much information in my particular case, who
wouldn't be curious to see exactly what is going on down there? To think that
lesions may be forming beyond what we already know about is unsettling to say
the least.
If I decide to join a clinical trial or need to reconsider surgery (hate the
idea) I would push harder for a PET scan. That nagging hope that all is not lost
keeps me fighting on. It just doesn't feel right to kick back and coast yet.
However, I want to be reasonable too and not demand procedures that will make no
difference or do no good, or could even set me back.
I certainly intend to discuss this issue with my Onc next visit. Thanks
for your thoughts.
Elizabeth
------------------------------
Date: Wed, 1 Dec 2004 11:41:55 EST
From: Elizabeth Parcells
Subject: Re: Healing Circle -- Steve
Dear Kate and Steve's healing circle,
I am praying hard for Steve to prevail thru all of this. He is such a valuable
soul! Hoping for the best. Strength and courage to you.
Elizabeth
---------------------------------
Date: Wed, 1 Dec 2004 23:05:32 EST
From: Elizabeth Parcells
Subject: Re: post-op. passing blood
Hi,
Don't quote me, I'm no doctor. But I had colon surgery to remove a sigmoid tumor
(with colostomy) and did have something kinda disgusting exit my rectum some
week after. I had been told to expect some mucus and dark or black blood to come
out, residue from the healing process I suppose. It only happened once and there
was no other bleeding or discharge after that. I was told it was nothing
to worry about.
For what it's worth, hope this helps.
Elizabeth
----------------------------
Date: Wed, 8 Dec 2004 12:00:41 EST
From: Elizabeth Parcells
Subject: Re: Time to go
Dear Jim,
I wish you and Aurelia peace and courage for both your transitions, into this
life and the next.
Sincerely, Elizabeth (dx colon IV 2003)
-----------------------------------
Date: Fri, 10 Dec 2004 15:38:17 EST
From: Elizabeth Parcells
Subject: Re: Hysteroctopy tomorrow
Hi Dagney,
Good luck with the hysterectomy surgery!
About the chemo break, I have had to take breaks from chemo a few times since
starting it in October 2003. I took a six week break in Dec and Jan, then
skipped a round to take a Florida vacation. I will play hooky again this
Jan-Feb so that I can go to NY to sing a concert.
So far there has been no progression of disease and that for over one year, in
spite of the breaks in chemo.
I am not your Onc, he knows best of course. But for me the breaks were more
beneficial than harmful, giving me a much needed respite from the effects and a
chance to regain some strength. I don't believe the breaks had any
influence on my outcome.
I hope that is one less thing to worry about for you,
Elizabeth
-----------------------------
Date: Sat, 11 Dec 2004 01:24:08 EST
From: Elizabeth Parcells
Subject: Re: SSD Social Security Disability
Here's how I went about applying for SSD:
I first spoke to my doctor and the hospital social worker who assured me that I
qualified for permanent disability. It is your doctor that has to sign the
application medical portion.
I got the number of my local office and called in. They were very helpful, in
fact the agent there interviewed me over the phone and filled out the
application for me. the agent didn't want me to come to the public office since
I was on chemo and vulnerable to infection. She was very nice. I prepared for
the interview by first downloading and printing out the application and
qualification rules so I had answers to all the questions. Some of them seemed
rather moot like how many hours per day did I need to be on my feet for work and
so on. But you have to answer them all!
Your disability is rather open and shut if you have advanced (incurable) cancer. So I got my disability status within eight weeks, with no need to appeal or
reapply. Right after that I was able to get my blue parking tag which has
made life easier.
The checks don't start right away since there is a waiting period of three
months from the day you became disabled until you are officially declared
disabled. I think this is to make sure you have not "recovered" in the meantime
or something. So you should apply ASAP to avoid waiting too long for your
checks.
I had heard that getting the disability status could be complex and difficult,
but that was not my experience. Things like chronic pain or mood disorders
often get booted the first try and you have to jump thru hoops, but a terminal
cancer diagnosis gets their attention and they did not give me any trouble at
all, in fact they were very very nice about it.
Hope this helps,
Elizabeth
--------------------------------
Date: Sat, 11 Dec 2004 01:58:47 EST
From: Elizabeth Parcells
Subject: Re: my beloved
12/10/2004 8:52:06 PM EST, nscoates@ writes:
My husband Robert died yesterday. He was 55.
I will stay subscribed to the list for a few more days to see if any of you have
suggestions on how to cope with grief and despair beyond measure. I would
lay down and die too, except for our two toddlers whom I need to take care of.
My deepest thanks to all of you for your advice and support over these last few
months.
Ona
Dear Ona,
I am so sorry for your profound loss. From your posts, I know how hard you
fought for his life and how much you loved him. The memories that pain you now
will become treasures you will cherish and pass along to your children.
They will learn from you what a wonderful, loving and courageous father and
husband Robert was.
You ask for suggestions on how to cope. I know that this group will have many
suggestions for you as you reach out for support and consolation. You are
a caregiver, the most valued individual a cancer survivor can have! All of us
who are patients will sooner or later have to rely on a caregiver for our needs,
and I am sure we all hope it will be someone with your strength and devotion.
We also know that our loved ones will have to endure the pain of loss and
bereavement for our sakes. That is not a happy thought. But that pain is the
price of great love, and love is a thing beautiful in the eyes of God.
Great love.
How to cope each day? I think before long you will be telling us how, offering
encouragement to others going thru what you have. On the other side of grief
comes wisdom, hard earned and valuable. You will go on sharing your great
love and that will pull you through.
For now, I can only offer my condolences for your loss and my enduring
admiration for you. The world needs people like you in it to make this
life precious and beautiful.
With love and respect, Elizabeth
-------------------------------
Date: Mon, 13 Dec 2004 00:37:44 EST
From: Elizabeth Parcells
Subject: Re: SSD Social Security Disability
12/11/2004 12:54:48 PM EST, Superdee565@ writes:
EParcells@ writes:
{The checks don't start right away since there is a waiting period of three
months from the day you became disabled until you are officially declared
disabled.}
Aloha -
I believe that the wait is 6 months. Most people can use their TDI
(temporary disability insurance) from their jobs during this period.
Dear Dagny, I stand corrected. Chemo brain or something. And yes,
the doctors reports are key to getting accepted.
EP
---------------------------
Date: Mon, 13 Dec 2004 20:15:23 EST
From: Elizabeth Parcells
Subject: Re: SSDI vs.SSI and dieting!
12/13/2004 10:32:47 AM EST, katemm@ writes:
I am facing the fact that I've let illness dominate my thinking about health for
too long. I've become overweight, thinking I had no choice.
Hiya Kate,
Good point. We should never allow any one issue to dominate our thinking or
limit our choices! Even cancer. I am suitably busy with my cancer but do try to
keep up with other things and people as well. I look on the bright side of my
situation. With all the new problems I have because of illness, some problems
have vanished because of it too!
My favorite no-more-worry is that I don't have to do weight loss diets ever
again.
After a lifetime of struggling to keep my weight down, I get to eat whatever I
want! Operative word is "want" here, since the appetite is not always good and
my weight tends to drop. So when I feel like some Key Lime Pie, I eat it without
guilt! If anything, I can congratulate myself on keeping my weight UP!
Okay, Okay, I know, good nutrition is important now more than ever. Ya gotta eat
the good stuff too. It's still not okay to load up on sugar, fat and carbs.
I find that a protein rich diet suits me well during chemo.
Main thing is, we all need to take good care of ourselves. Kate, I wish you well
with your full return to health and fitness. If you ever want to tap my vast
experience with dieting, feel free to write me. I had it down to a science!
Elizabeth
---------------------------
Date: Wed, 15 Dec 2004 02:26:50 EST
From: Elizabeth Parcells
Subject: Question on Blood thinners and Avastin
Hello friends,
I have a question. I recently informed my Onc that I am unwilling to take the
blood thinner (Innohep, one daily self injection, a drug similar to Lovenox)
anymore. This is because of nasty side effects that seem to have worsened since
beginning Avastin. I was bruising very badly and bleeding more than seemed
right. Since stopping the blood thinner, I still have nose bleeds and trouble
stopping bleeding from small nicks or cuts. But I am bruising much less.
The blood thinners were to reduce the chance of embolisms from a DVT in my right
leg. I was told that the chemo therapy, surgery and the cancer itself
could have caused the clot to form and that I should take blood thinners daily
"forever." But lately I have been most uncomfortable with the daily shots,
bruises, welts, nose bleeds and episodes.
My question: Anyone out there on blood thinners having increased trouble since
starting Avastin? Could there be a correlation?
This is really a "Lady or the Tiger" situation. I don't want to die of an
embolism, but I don't want to bleed to death either! Any thoughts?
Thanks, Elizabeth
------------------------------
Date: Wed, 15 Dec 2004 02:29:54 EST
From: Elizabeth Parcells
Subject: Re: Next CT
I get CTs every two months. Frequency of scans ordered for cancer patients
probably varies widely depending on various factors.
Elizabeth (Colon IV liver mets and beyond)
------------------------------
Date: Wed, 15 Dec 2004 13:57:54 EST
From: Elizabeth Parcells
Subject: Re: About me
Dear Kate,
Thanks for your biography. You are so articulate about cancer and its treatments
that I learn a great deal from your posts. This is THE best list on the subject
out there, largely because of your contributions. You are right to caution each
of us to use any information we get with discretion. Your posts do help
round out the info we have to get thinking and make better decisions.
I admire your perseverance and life energy during all the cancer incidents
you've endured. Each time bad news comes our way it can be devastating. To pick
up and keep on fighting again and again shows "True Grit." Bravo!
With great respect, Elizabeth
------------------------------
Date: Wed, 15 Dec 2004 13:57:49 EST
From: Elizabeth Parcells
Subject: Re: Question on Blood thinners and Avastin
12/15/2004 7:58:58 AM EST, katemm@ writes:
Lovenox or Innohep is pretty strong medicine. Low-dose coumadin is the more
usual preventive for blood clots. Was it prescribed because you already had had
blood clotting?
Hi Kate, thanks again for your informed insight. I was put on Coumidin first n
Dec. 2003 after spending five days on Heperin in the hospital for pulmonary
embolisms to both lungs. This occurredand four months after surgery and two months
after commencing FOLFOX. The DVT had not been noticed up til then, but the
embolisms were visible on a CT scan I had the very week the chest pain and
breathing difficulty started. (I got lucky I guess.) At the time, I was taking a
"break" from FOLFOX because of toxicity and side effects.
Coumidin was going okay until I resumed the FOLFOX in January '04. I had a
couple of bleeding incidents and trouble keeping the values stable since Coumidin and chemo apparently don't mix. So I started Lovenox. That was going
tolerably well (I hated the twice daily self injections) until I started the Avastin
in March '04 when the side effects from the thinner seemed to get worse.
I see that I have a choice to make: Keep the Avastin in spite of the risks in
hopes that it will slow down progression and grant me some extra time, or drop
the Avastin (in which I had placed much hope) and take the blood thinner on the
chance that a stroke or embolism can be prevented. Hmmmmmmmmm........... the
Lady or the Tiger?
Yes, I have been talking to my Onc about this. He is a very good specialist in
whom I have faith and he has advised me well so far. He wasn't thrilled with me
dropping the blood thinner, but we had a deal from the start that I would be
making the final decisions on my treatments and meds. So he respected my
decision, tho he made his opposing view on it clear. Mitigating is that my
cancer is not progressing (much) and that I am physically active enough to keep
the blood moving. He reserves the right to push the blood thinners later
on.
He is also suggesting moving me over to Erbatux by March (after my NY concert)
and considering a trial or new treatment then.
Thanks again for listening, but this Avastin question might be of interest to
many here on the list.
Elizabeth
----------------------------
Date: Thu, 16 Dec 2004 00:56:45 EST
From: Elizabeth Parcells
Subject: Re: Avastin -Blood Clots & Procrit and Blood clots
12/15/2004 5:58:08 PM EST, ELanzendorfer@ writes: The onc said no Avastin while on coumidin. The Avastin brought the CEA
level down from 45 to 9.
Hi Elaine,
I have been on Avastin since March and it did bring my CEA down some. But lately
my CEA level has been creeping up again, from 30ish back to 40ish. Though CEA
is supposedly not a reliable marker, it still seems to get the doctor's
attention.
As I stated in an earlier post, I chose to drop the blood thinner I was taking
because of bleeding and bruising. Your doctor's advice, "no Avastin while on
coumidin" caught my eye. I keep wondering which I should choose, the promising
cancer treatment or that annoying blood thinner! With my CEA rising in spite of
the Avastin treatment, it may be time to consider a change in treatment after
all.
Thanks, Elizabeth
---------------------------------
Date: Fri, 17 Dec 2004 01:28:04 EST
From: Elizabeth Parcells
Subject: Re: Avastin -Blood Clots & Procrit and Blood clots-reply
Hi Elaine,
Thanks for the words to the wise. I am aware of the risks of not taking the
thinners. Having gotten thru my embolism incident alive, I know I have used up
one of my nine lives. I am doing my best to weigh the odds and make my choices. Since my care is palliative, my Onc has told me that the decisions lie with me. He makes sure I am informed and acting responsibly. The treatments are helping
me live a better, longer and more comfortable life. However I am focused on
quality of life too. There are some things I want to do.
I am taking another break from treatment to recover and gain strength. In March
I will begin a new plan of attack. There are still treatment options for
me to consider.
Again, thanks and good wishes to you and your family, Elizabeth.
-----------------------------
Date: Sat, 18 Dec 2004 09:57:44 EST
From: Elizabeth Parcells
Subject: Re: Inner Peace
Hi Dr. Phil,
Thanks for your latest posts on Health Advice and Inner Peace. I found the
smiles and laughter they inspired most helpful to lighten up my mood. A very
capable onc nurse who treats me advises the three things a cancer patient needs
most:
"Hope, Humor and Drugs"
Thanks for your steady doses of the second one! Or: Thanks, I needed that!
Elizabeth
---------------------------
Date: Sat, 18 Dec 2004 10:10:45 EST
From: Elizabeth Parcells
Subject: Re: Avastin -Blood Clots & Procrit and Blood clots for Rich
Hi Kate and List friends,
Kate, enjoying a little beer now and then sounds like bad advice medically, but
from the "quality of life" point of view it makes perfect sense! So here's a
little German poem I'd like to share with the list:
Im Himmel gibt's kein Bier So trinken wir es hier.
(In Heaven there's no beer, And so we drink it here.)
Coffee doesn't rhymn. but I'm hoping there's a Starbucks up there.
Elizabeth
---------------------------------
Date: Thu, 30 Dec 2004 10:11:13 EST
From: Elizabeth Parcells
Subject: Re: Barium Enema?
12/29/2004 10:33:01 PM EST, olis1@ writes:
I've never heard of a BA being a follow up to a colonoscopy. Usually the
other way around.
Jon
Hi Jon and List Friends,
At the time I had my colonoscopy for suspected colon cancer, the growth in my
sigmoid colon was too large to allow the probe to pass it into the rest of the
colon. As a result, a barium test was done to get a look at the rest of the
colon prior to surgery. So the BA can be used as a follow up to a CT under
special circumstances.
Elizabeth
----------------------------
Date: Thu, 30 Dec 2004 17:00:41 EST
From: Elizabeth Parcells
Subject: Re: I'm done with Folfox - WOOOOHOOOOO!
Congratulations! How sweet it is! to have the freedom from the treatments and
the bright prospect for feeling better.
I was on FOLFOX from October 03 until March 04, six months. The last two
treatments gave me such itching that we had to discontinue the Oxaliplatin. We
replaced it with Avastin which I am still taking.
I have been told that my treatments are palliative and intended to help relieve
symptoms and gain time. Therefore it is my call whether to treat or not.
This freedom has allowed me to feel "in control" of my routine and thus more
motivated to take the meds.
However, after more than a year on chemo with no end in sight (that is a good
thing actually) I am longing to take a lengthy break from treatment to regain
strength and get my life back.
I wish all chemo patients and survivors a good outlook and courage during
treatment. We all deserve purple hearts and our caregivers deserve sainthood!
Regards, Elizabeth
------------------------------
Date: Fri, 31 Dec 2004 14:24:48 EST
From: Elizabeth Parcells
Subject: Re: OT - Inspired Giving
What a beautiful message! Thank you and God Bless.
Elizabeth
--------------------------------
Date: Mon, 3 Jan 2005 23:27:52 EST
From: Elizabeth Parcells
Subject: Re: Forced to quit FOLFOX early?
Hi,
I did FOLFOX for about nine rounds too, but had a bad reaction twice. I got
severe itching (not fun) 30 minutes into the infusion and had to be given benedryl to stop it. I had neuropathy symptoms from it too which I still have
nine months after stopping the Oxaliplatin.
My Onc told me that Oxaliplatin is not a drug that can or should be taken for
extended periods. It is actually typical for patients to become intolerant
by the seventh or eighth round.
Speaking from the patient's point of view, I was glad to be off the stuff, it
was awful. The Onc pointed out that there are other treatments on the rack to
try and that all is not lost just because one drug has to be discontinued.
So, as concerned and disappointed as you may be, think of it as a relief to your
Mother and a chance to try something else.
I don't know anything about the study you mentioned, but I am pretty sure that
the Oxaliplatin is still present in my body after all these months. Maybe it's
still therapeutic, who knows?
Best to you and your mother, Elizabeth
---------------------------
Date: Thu, 6 Jan 2005 23:00:17 EST
From: Elizabeth Parcells
Subject: Re: tom
Dear Sharon,
Thanks for your post on Tom. You and he are an inspiration to me. I
wish you both courage and serenity in the coming time.
Elizabeth (CC IV Dx 7/03)
-------------------------
Date: Sun, 16 Jan 2005 13:55:17 EST
From: Elizabeth Parcells
Subject: Cancer Awareness Bracelets
X-To: info@countmeblue.com, info@hopebracelet.com
Dear Sirs:
The now famous yellow "Livestrong" bracelets have raised significant awareness
and funds for the fight against cancer. So I was very glad when the blue
colorectal cancer awareness bracelets became available. I ordered 200 of them
right away. I am distributing them to my family and friends and to anyone
who will listen.
As a colon cancer sufferer in an advanced stage. I am trying very hard to make
everyone I can reach aware of this terrible and insidious disease. By the time
symptoms are noticeable, it is usually too late. My cancer was found too
late and there is no cure for me.
That is why people aged 40 and over MUST act before they become symptomatic by
getting screened for colon cancer via colonoscopy. I have personally
encouraged several people near and dear to me to get colonoscopies and in three
cases, their lives were saved via early detection.
With regret I notice that bracelets just like the cancer awareness bracelets are
now being sold to express political views, school spirit and soon I am sure,
many other fashionable statements.
Cancer is such a significant threat to the population and awareness so vital and
life saving, it is a tragedy to dilute the message with these other bracelets.
Who will hear our plea over the din of this fad?
Thank you for listening.
Elizabeth Parcells
----------------------------
Date: Sun, 16 Jan 2005 16:44:12 EST
From: Elizabeth Parcells
Subject: Re: Cancer Awareness Bracelets
My last post is the letter I sent to the producers of these fad bracelets that
are competing with the cancer awareness bracelets. I hope I have at least
made my point.
Thanks, Elizabeth
---------------------------
Date: Thu, 20 Jan 2005 18:33:59 EST
From: Elizabeth Parcells
Subject: Re: achy bones with avastin
Hi,
I have been on Avastin for ten months. I notice a raspy throat, dry sinuses with
nose bleeds in the days following treatments, and over the past few months, very
annoying neck muscle and rib pains. With the 5FU and Leucovorin ongoing,
the usual fatigue and queasiness are omnipresent, but I am not experiencing any
debilitating effects.
I have no idea what is causing which pains, but there it is. I take regular
Motrin when I get too uncomfortable. It is hard to know if side effects or
symptoms are "normal" or not. I have given up jumping to
conclusions.
Elizabeth
--------------------------
Date: Fri, 21 Jan 2005 07:33:25 EST
From: Elizabeth Parcells
Subject: Re: next?
Hi Cynthia,
The thing the doctor wants to put in your father's shoulder is called a port. It
is placed under the skin on the chest below the collarbone. The procedure is
considered minor and is done outpatient. The port will be very helpful to
your father by making the administration of chemo much easier for him.
I had a port put in before starting chemo and I would not want to be without it. The site will be sore for a week, but will heal completely.
The port is accessed with one poke and allows chemo to be infused easily, no
need to access veins in the arm which might break down or be harder to access.
As far as how aggressive his chemo should be, your doctor will consider
treatment options according to the patient's general health, age and
preferences. These days, patients who wish to participate in decision
making are helping determine their own treatments to optimize therapeutic effect
while considering quality of life.
I know this cancer stuff is complex and confusing, so there are no "dumb
questions." Feel free to ask all the questions you need answers to and make sure
you understand the doctor's answers.
Good wishes to you, Elizabeth
---------------------------------
Date: Sat, 22 Jan 2005 20:40:50 EST
From: Elizabeth Parcells
Subject: Re: ebatux stop workin
1/21/2005 9:10:09 AM EST, Rslindley@ writes:
There are lots of stage IV cancerteers that shock their doctors.
Hi Suzanne. I would be glad and interested to hear more about the stage IV cancerteers you mentioned. I would like to be one of those who makes it past the
magic five year point. How are you doing it?
I am taking a break from chemo, ending my Avastin. Next I will try Erbitux.
I look to the list to hear about similar experiences.
Elizabeth (CC stage IV dx 7/2003)
---------------------------------
Date: Mon, 31 Jan 2005 10:30:11 EST
From: Elizabeth Parcells
Subject: Locks of Love and Donor Intent
Hello List Friends,
I would like to add a few comments to the discussion below:
Wigs for kids is certainly a worthy charity in my view. The other question is,
does the organization accepting donations and providing the wigs adhere to the
high fiduciary and moral standards required of a 501(c)3 charitable
organization?
From my experience (25 years on the stage wearing all kinds of wigs), I know
that hand made custom wigs of real human hair are not cheap. Anywhere from $1000
to $3000 is not unreasonable depending on length and quality of the hair and the
labor involved. It takes the equivalent of three "heads of hair" to make just
one such wig, so of course, donated hair has to be sorted for type and quality
and then combined to produce each wig. Human hair wigs are also more
difficult to maintain since they need regular styling and cleaning to be worn
properly.
Artificial hair wigs are very inexpensive compared to custom human hair wigs. $100 or less will buy you a nice one. They are very easy to maintain, simply
hand washed in the sink and dried, ready to wear again with a simple comb-out. (I myself have been using such a wig to look better in spite of my thinning
pate.) But young children can look conspicuous and awkward with an artificial
hair wig. The advantage of a custom human hair wig is that it can look
much softer and more natural on a child.
So I find it plausible that an organization like "Locks of Love" could be
spending an average of two grand per wig, and even that their CEO is paid fifty
grand a year. I also accept the raising of cash from selling unsuitable or
unused hair to pay for wig manufacture.
Disturbing is that accurate audited financial reports of this or any other
501(c)3 charitable organization are not made readily available for donors and
the public to review!! Donors absolutely should follow up on organizations to
which they give to be sure that their intent is being appropriately honored. Tax
exempt charitables are bound by law to provide financial information on request.
So, DONOR BEWARE! But then, that rule applies to all charitables and all donors.
Hope this helps.
Elizabeth
1/30/2005 9:46:44 PM EST, katemm@ writes:
On 30 Jan 2005 at 19:27, Arlene Margolis wrote: I hope this gives the info you
desire.
http://www.give.org/reports/care2_dyn.asp?733 > > 1/30/2005 7:09:15 P.M. EST, > robin_hannel@
writes: > > Dear list, > Hoping this question is acceptable here as it is not
directly colon. I have > been asked to donate my hair this coming May to Locks
of Love. Does anyone > know the recommendations for this?
I read the charity report on Locks of Love and am a bit disturbed by it. They
raised about $375,000 and provided 113 real hair wigs and 39 artificial wigs. That comes out to about $2,500 per wig donated.
That seems high, but perhaps it is not.
Also, $150,000 of that money came from selling hair. So your donation of hair
may only indirectly help children in need of wigs when it is sold to raise
money. Another $200,000 came from cash donations.
They have an Executive Director who is paid about $50,000. In
addition, they cannot provide an audited financial statement. I may
be way off base on this one, but perhaps this is not the best use of volunteer
gifts.
Kate
------------------------------------
Date: Sat, 5 Feb 2005 11:36:28 EST
From: Elizabeth Parcells
Subject: Re: Avastin/Nasal complications
2/4/2005 11:31:13 AM EST, Deborah.Schab@ writes: I am wondering if anyone has had
sinus/nasal problems as a complication of Avastin. I know that Avastin can cause
bleeding in the colon, small bowel, and other epithelial linings. The sinus area
contains these same type of cells, so I thought this might be the cause of my
sister's problem. She has been having blowing blood from her nose since she was
on Avastin. The Avastin was discontinued in July, but the nose problems
continue. Now there is a small spot showing up on her PET scan in the nasopharynx. I am hoping it could just be inflammation or irritation from the
damage done by Avastin. Any chance my assumption could be correct? I do
not want to think it is the other alternative, such as a distant metastasis.
Can anyone tell me if there's a connection with Avastin and nasal side effects.
Thank you in advance for any help you can give.
Hi Deborah,
About the problem you mention below, I am on Avastin and have noticed the same
thing: bleeding nose, increased bleeding in general in fact, and some gravel in
my voice that wasn't there before. (I am 53, a professional singer, dx cc 7/03
stage IV with mets to liver and pelvis, recently noticed lung spots) As a singer
I am hyper-sensitive to changes to my voice and mucus membranes in the sinuses. Others on this list have reported the same effect from Avastin
so I am not imagining it.
But I don't believe this side effect is serious or life threatening in any way. For me it's just a damned nuisance! (Laughing a little) So don't panic. I have
decided that if the Avastin can help with the much larger problem of the cancer
itself, I can put up with a few nose bleeds and gravel in the voice.
In fact, this month I will be singing on three different concerts in spite of my
compromised singing voice. I am not taking this cancer thing lying down, y'know,
and will sing until they carry me off the stage!
Yes to life! Elizabeth
-------------------------
Date: Fri, 11 Feb 2005 12:41:11 EST
From: Elizabeth Parcells
Subject: Re: CEA tests
2/10/2005 12:11:27 AM EST, Franrauba@ writes:
Hi Merle:
As Ray said CEA is not a reliable indicator for everyone. My CEA did not rise
when I had a met to the lung and usually remains pretty much the same within a
few fraction points. My Onc therefore relies on symptoms and exam to determine
if I need a CT or PET scan or any other diagnostic test. I see him every 4
months with blood work done before the visit. Hope this helps. Fran
I too am mystified by the CEA values. I've been told they are not reliable
markers, but have noticed that the doctor pays keen attention to them none the
less. Prior to surgery, mine were up in the 160 range, tho I was told that much
higher values are seen at this stage too, like 800 or even over 1000! yikes. After surgery to remove the primary tumor in 2003, my CEA dropped to under 30,
stayed there for some months. Last summer it began to creep up again, first to
33 then 37, then to 44. The doctor has not suggested a change in treatment until
recently when he noticed two very small lung spots, but was relying on CT scans
as the deciding factor. The cancer has been stable all along. In March,
depending on what the next scan shows, we will talk about changing the
treatment. Or not... ??? hmmmm......
So, I don't exactly know what this CEA thing means for real. An indicator as
they say, I suppose. I'm keeping an open mind.
Elizabeth
-----------------------------
Date: Fri, 11 Feb 2005 23:41:42 EST
From: Elizabeth Parcells
Subject: Carnegie Hall and Blue Buddy Bracelets
Hello everyone,
I'm Elizabeth Parcells, 53, dx CC 7/2003 at stage IV. I've been thru the wringer
since then but am feeling better and stronger these days. In my "real" life, I
am a professional classical singer with a successful singing career to look back
on. After I became ill, I thought I would never sing again. (Prognosis was
pretty gloomy!) But here I am, not out of the woods, but still in the game! I
can't express how great it feels to be getting back into my life! Knowledge is
power, and this [COLON] list has helped me learn how to survive.
On February 23, 2005 I will be performing on a concert at Weill Recital Hall at
Carnegie Hall, New York. On that occasion I plan to kick off the CC Awareness
month by distributing blue bracelets and urging my audience to be vigilant with
their health, to find the cancer early, to avoid my fate. Claude Debussy, the
great French composer, died of colon cancer in 1918. His very last
composition, Suite for Violin and Piano will be performed on this concert.
If any of you are in the New York City area on Feb 23, I would love it if you
could come to the Carnegie concert. Tickets are only $20 and there's a blue
bracelet in it for you!
Cheers and warm regards to you all, Elizabeth
--------------------------
Date: Sat, 12 Feb 2005 22:22:34 EST
From: Elizabeth Parcells
Subject: Re: Unlocking the Pearly Gates
Dear Sheila,
It is hard to find the right words. Know that you are in my prayers and thoughts
and those of your many friends here. I wish you continued strength and comfort
in the coming days. Prayers and blessing to you and your family. Love lives
forever. Elizabeth
--------------------------
Date: Tue, 15 Feb 2005 21:25:27 EST
From: Elizabeth Parcells
Subject: Re: Carnegie Hall and Blue Buddy Bracelets
Hi, I may be a very, very distant cousin of the coach, but do not know him
personally. Why don't we send him a buddy bracelet anyway? Everyone could use
one!
Elizabeth
--------------------------
Date: Tue, 8 Mar 2005 12:31:56 EST
From: Elizabeth Parcells
Subject: Carnegie Concert and the Blue Bracelets
Hello fellow survivors and caregivers, This is Elizabeth Parcells reporting back
to you on the Feb. 23 concert at Carnegie Hall in which I participated. Success!
Here is an excerpt from the first concert review which will appear next month in
a New York City Concert periodical: ************************************** Maria
Bachmann, violin Jon Klibonoff, piano Elizabeth Parcells, soprano Felix Justen,
guitar Weill Recital Hall at Carnegie Hall February 23, 2005 On Pro Musicis
February 23rd concert, one of the most memorable nights of the season, Maria
Bachmann and Jon
Klibonoff were impeccable, and Elizabeth Parcells made a heroic
return to the stage after battling cancer during a two-year absence. Parcells
brought along her long-time musical partner, guitarist Felix Justen, and
presented music by Roberto Gerhard and Jacques Bondon. She sang admirably
and tenderly, inspiring the large crowd in attendance. Gerhards selections were
from his Cantares: Seven Spanish Songs for Voice and Guitar. Parcells lent
a silken beauty to her high register and a solemnity to her low, and she brought
integrity and profound calm to her performance. Understandably, her voice 
sounds a bit weak and withdrawn, but one couldn't have asked for more in this
first comeback. Justen's guitar playing was her fine compliment, although at times
he was dynamically overpowering. In Jacques Bondons Trois Complaintes for
Soprano and Guitar, Parcells brought darker and more spiritual aspects to her
characterizations, especially in the middle movement in which deep sadness is
depicted, and in the uplifting final movement. Everyone, it seemed, could sense
the irony, as if Parcells was living and breathing this music based on her own
recent experience........ A decorative, yet loyal arrangement of Summertime
(from G. Gershwin's "Porgy and Bess"), performed by all four of the
evening's
artists, brought this unforgettable concert to a heart-warming conclusion.
-Anthony Aibel **************************************** Before I began to sing,
I made a few remarks. I thanked Pro Musicis Foundation for their faith in me
over the years, and especially when they invited me to sing in spite of my
cancer situation. Then I spoke directly to my audience and told them that I had
a very personal message and a gift for each one of them. I asked them to be
aware that colon cancer can be treated early and even prevented by a
colonoscopy, that there was a buddy bracelet for each of them to remind them or
a loved one of this, to get the bracelet, to wear it for me, and get the test
for themselves. I added that if my initiative saved but one life, it would all
be worth it. When I came back on stage after the intermission, it was a joy to
see a blue bracelet on every wrist in the hall! Of all the triumphs I could wish
for as a singer and a human being, this was the greatest moment of all. Warm
regards and love to you all, Elizabeth
----------------------------
Date: Tue, 8 Mar 2005 13:06:25 EST
From: Elizabeth Parcells
Subject: Decision Point and Pain Management
Hello, its me again, (CC dx 7/03 stage IV Liver, lung and pelvic mets)
Back from my feel-good trip to New York, it is time for real life again.
So on Friday I had my routine CT scan, and yesterday I met with my oncologist to
discuss our next moves.
The CT scan shows that, since November, the liver lesions are active again and
increasing in size. Also, several lung mets are now clearly visible. I had been
on 5FU, Leucovorin and Avastin for over ten months before I took a break from
all treatment to prepare for my concert in NY. Indication is that the treatment
had already stopped working and it was time for a change. The oncologist urged
that we begin Camptosar asap, which will be Monday next.
I asked about any new treatments that could target the liver, such as the SIR
Sphere radiation delivery technique, but was told once again that, since my cancer
has spread beyond the liver to lungs and pelvis, that systemic chemo is my only
real option. Any comments on this?
Also, I have been having pain in my right ribcage and right shoulder areas, more
or less severe, for many months. The pain has become very aggravating lately
(the location of this pain impairs my breathing for singing and I felt that
keenly on stage this time) and I asked what I should do about it. The oncologist
said that this pain is typical for liver conditions and that only a pain killer
of some kind is indicated. Now that I realize it's not just a pulled muscle and
in fact that this pain is cancer related, I am thinking hard about pain
management. Any comments on this would be appreciated.
I am really looking for pain relief without messing up my stomach or undue
damage to my liver, or is this mission impossible? I am sure many of you face
the same challenge, so your experience will help many more of us. Thanks, you
guys! Elizabeth
--------------------------------
Date: Tue, 8 Mar 2005 13:11:55 EST
From: Elizabeth Parcells
Subject: Re: Carnegie Concert and the Blue Bracelets
X-To: katemm@
Hi Kate,
You reach many hundreds of people, maybe even thousands, with this listserver!
What a "niche" !!
You are right tho, each of us has an opportunity to make a difference every day. Let's keep doing what we're doing!
So many clueless denialists, so little time! :)
Elizabeth
---------------------------------
Date: Fri, 18 Mar 2005 23:44:28 EST
From: Elizabeth Parcells
Subject: Re: Quality of life
3/16/2005 11:53:25 PM EST, houmeri@
writes:
Tony's cancer has become systemic.
His oncology team are now talking about extending his life rather than a cure,
although they haven't given up on that entirely.
It's important to both of us that Tony's remaining time be as good as we can
make it. Can anyone else recommend medications/lifestyle changes that can keep the
quality of life high for as long as possible? Norma
Seize the day, put no trust in tomorrow.
Hi Norma, hello friends,
Quality of life becomes the main issue for those of us no longer seeking a cure. I was told at diagnosis that my case is incurable and that, without treatment, I
had a year or less to live. So in the first phase I opted for aggressive
treatment, hoping to at least gain more time. I am very glad for the time I have
won, giving me a chance to live my life and look for more treatment opps to
extend my life. It has turned out to be a strange balance between my
willingness to endure the rigors of chemo and my determination to have quality
of life in spite of it.
The compromise for me and my oncologist is to provide theraputic treatment that
relieves symptoms and prolongs life (the word is palliative) and still leaves me
feeling well enough to pursue favorite activities. I have been thru many months
of FOLFOX, Avastin and recently, Camptosar. There have been complications like DVT with PEs,
dehydration from excessive fluid loss, trouble eating, things that are not
cancer symptoms but rather treatment side effects, along with the expected
nausea, fatigue and so on.
I have seen fit from time to time to take "breaks" from treatment to regain my
strength and well being and to have quality of life to do things like take a
family vacation, finish an important project or perform on concerts. These
reprieves have been very important to me, giving me the feeling that I am still
truly alive, not defined by my illness.
When I do have to go thru treatment and unpleasant times, I take to my bed and
make my surroundings as comfortable and comforting as possible. I have wonderful
caregivers to help me. Lately I have been having pain from the liver mets and
have been thinking about pain management. I try to deal with pain by resting,
taking baths, keeping my mind occupied, trying to relax. The pain is worse
when I over do it.
I too am looking for ways to make my time as comfortable and good as possible. There will come a point when I decide to drop the treatments, probably when
their effectiveness has been exhausted. Actually that sounds pretty good
to me right now! Chemo is nasty! In the meantime, I am fighting for more time
and hoping for better times.
An observation I have made: there is a profound difference in thinking between
patients who have a chance at a cure and those who do not. For patients hoping
for a cure, quality of life can wait as they pursue every treatment avenue open
to them, willing to do whatever it takes to improve their chances of survival.
This is obvious.
Patients like me for whom there is no cure find themselves more and more
interested in making the most of the time they have. I never thought I would
hear myself say that quality of life has become more important to me than
quantity. It is as if my most basic survival instinct, survival at all costs,
has been reprogrammed. I have truly had a change of heart on this issue.
We talk a lot about positive mental attitude in the fight against cancer. Quality of life is very much about attitude, emotional and spiritual well being. These are easier to maintain when the body is not in pain or distress.
Any help I can get to feel comfortable, free from pain and happy are more
important to me now than living an extra month or two thanks to some unpleasant
treatment.
It is hard to trust the future when it is so uncertain. It is hard to face
decisions like this when you are unsure and feel so inadequately informed. I
have second thoughts and wonder "what if?" One thing is certain, the only one
who can know what is right for the patient is the patient himself. Each of us
has to decide what is right for ourselves. These are tough decisions which
earn respect.
Thanks for listening, Elizabeth
------------------------------
Date: Tue, 22 Mar 2005 22:36:31 EST
From: Elizabeth Parcells
Subject: Re: Liver challenges - continued
Hi Harry and Bella,
I am so glad that Bella was able to travel and visit her grandchild as she so
dearly wished. Some things are just that important. I sure am glad I
took some quality time (away from treatment) for my heart's wish too, I'll never
regret it.
Here's prayers, energy and support coming your way from me.
Elizabeth
----------------------------
Date: Wed, 23 Mar 2005 13:43:42 EST
From: Elizabeth Parcells
Subject: Re: Liver challenges - Miracles
Hi,
Miracles are wonderful. Each of us has experienced them if we know where to
look. Some miracles seem common because they happen every day, like life for
instance. Others seem more special because they seem to occur less frequently,
like unexplainable cures. Miracles come in large and small, ordinary and
extraordinary, hoped for and unexpected.
We all hope for miracles, a few of us dare to ask for them. The very possibility
of a miracle keeps our hopes alive, our faith strong. And hope is what
keeps us mortals striving and living onward.
I see miracles all around me, all the time. We may not receive the miracle we
prayed for, but God in his infinite love and wisdom will give us something even
better. So, along with faith and hope, there is trust.
As a "hopeless case" myself, it is ironic that hope is a greater part of my life
than ever before. I am more full of hope now than before I became ill. So I am
really a "hope-more case." The trust part is accepting a higher wisdom that
knows better than I do what I truly need. Being hopeful, I continue to pursue
treatments and do all I can do to help the miracle along. (Like the old story of
the drowning man who trusted God to save him, but drowned anyway, to which God
replied, Why didn't you get into the boat I sent you?)
Well, thanks again for listening, Elizabeth
-----------------------------
Date: Thu, 24 Mar 2005 17:35:31 EST
From: Elizabeth Parcells
Subject: Re: Blood clots, Coumadin, and Avastin
Hi Colleen,
Yes, I have experience with this. I had a DVT clot form in my leg which
embolised to the lungs in Dec. 03. The embolisms were noticed on a chest CT and
I was having symptoms (severe chest pain, difficulty breathing) so I was
hospitalized on Heperin for five days, after which I began Coumadin. At the time
I was on FOLFOX which made the Coumadin too unstable to use safely. I was
switched to Lovenox, a dense molecular heperin that is more reliable in tandem
with chemo.
I had problems with bruising and welts from the twice daily self injections, and
bruising from minor trauma like brushin my leg against a coffee table, very
annoying!
When I switched from Oxaliplatin to Avastin, the bruising and bleeding problems
seemed to get worse. My injection sites looked like battlefields and I was
running out of places to inject. I HATED the whole thing. So finally, after
eight months, I simply decreed that I would not take the blood thinner anymore.
NOT recommended! But hey, I'm stubborn.
I knew I was taking a chance that the clot could embolise again, this time, with
possibly fatal results, but I was determined to finish the Avastin. I am not
saying this was a wise or even educated move on my part. But that's what I did. The Avastin did stop working for me eventually so that I have changed over to
Camptosar. But I am very naughty, and have not resumed the blood thinner
injections. I DO NOT recommend this course of action to anyone, it is what
I took upon myself to do.
The doctor has told me that chemo MAY help, that blood thinners MAY prevent
embolisms, that Avastin helps in SOME cases; not exactly cast in bronze if you
ask me. So I weighed the "options" and acted on my own instinct and personal
preferences. That is why I say, each of us has to make decisions for ourselves,
based on sketchy information, unreliable prognosis, and things that cannot be
known. Lady or the Tiger? Do we feel unsure? Am I still here? You bet!
Anyway, I wish I could offer you a clear path to your decisions, but the truth
is, no one can. Just decide.
Good Luck! Elizabeth
-----------------------------
Date: Thu, 24 Mar 2005 20:43:59 EST
From: Elizabeth Parcells
Subject: Re: Liver challenges - continued
Dear Jenny,
Thanks for your post. You wrote: >>Will my next CT show evidence that I
took 7 weeks off treatment? Perhaps, but what it will not show is the real story
- that I danced all night at our only child's wedding.
You are right - some things are just that important. Jenny<<
Yes they are.
Onward! Elizabeth
---------------------------------
Date: Fri, 25 Mar 2005 19:53:07 EST
From: Elizabeth Parcells
Subject: Re: What do we tell the patient?
Hello friends,
Reading all the posts on this topic, I realize again how individual each case
is. Still, even in the case of a child, when it's bad news, the patient has a
right to know. The art is in the telling.
When I had cancer in childhood, no one ever said the C word to me. I was in my
twenties before I discovered that the thing that had haunted my dreams and had
damaged my body was indeed cancer, an inoperable Neuroblastoma diagnosed in 1953
when I was two. But even after the danger had long passed, my parents and
physicians never told me what had happened. I had to sleuth it out for myself!
Lo and behold, as a 20 year old, I went thru all the stages of grief over my
cancer as if it were just happening to me. It took time, but I worked it
out by myself.
The thing that angered me most at the time was that I was to be released into
adulthood, expected to take responsibility for myself and my health, with no
knowledge of my history!
This time when I was diagnosed as a fifty year old, there were no parents,
husbands or guardians to take the news for me. The doctor had no one to "fall
back on" and told me directly and completely what was wrong. After my earlier
experiences, I found it refreshing! I was glad and determined to be in the
driver's seat this time, calling the shots if you will. And, difficult as it
was, I lost no time informing my loved ones. The truth is stringent, it
stings as it cleanses.
I realize that there are individuals who may not be capable of advocating for
themselves and need the help of others to deal with their condition. This
is a prayer for understanding.
The Art is in the Telling.
Elizabeth
P.S. It's no wonder that nobody wants to be the bearer of bad tidings. Messengers have been shot for less!! :)
-------------------------------
Date: Sat, 26 Mar 2005 18:19:35 EST
From: Elizabeth Parcells
Subject: Re: I need advice!
Dear Andrea,
I am older than you, but wanted to comment anyway. Since it is unusual for a 29
year old to get colon cancer, it is often missed until it is late stage.
You can consider yourself extremely lucky that this was caught so early.
You are correct to get second opinions because then you will have more
confidence in your treatment decisions. Don't be afraid.
There are many places on the web that have information on colon cancer with
decision trees and treatment descriptions on them. Use all your resources
to be as informed as possible.
The many friends on this list server will be a great pool of experience to help
guide you too.
Count your blessings! If you don't have to take Chemo, that is GOOD! Believe me.
Elizabeth
-------------------------------
Date: Sun, 27 Mar 2005 22:57:46 EST
From: Elizabeth Parcells
Subject: Re: Treatment options for resected metastatic Stage lV.
3/27/2005 11:09:23 AM EST, Jtracewear@
writes:
The oncologist was very confident and straightforward with my first-line regimen
of chemotherapy. This time the Doctors seem to be indecisive and that is
very disconcerting for me.
Hi Janet, I am in similar straits as you. After my surgery in Aug 03 I was
started on FOLFOX which I took for ten months. Next I was on 5FU, Leucovorin and
Avastin, also for about ten months. Currently I am taking Camptosar alone. The
decision process in each case was the oncologist giving me options, his educated
recommendation, and me deciding what I would do. Usually I would go with
what the doctor recommended.
As a stage IV, my oncologist has explained to me that I should stay on some kind
of treatment indefinitely. Since my cancer has progressed some, I agree with
him. He also told me that I could choose to take treatment or not.
My treatment goal is palliative, that is, to slow or stop progression of
disease, relieve symptoms, prolong survival without sacrificing too much quality
of life. The treatments I choose need to be compatible with this goal.
It is a problem if your doctors make an indecisive impression on you. However
this may be because they need to know what your treatment goal is. They provide
you with options and information, and then they help you decide what you want to
do. It's a little like a financial advisor helping you decide what to do with
your money, long term investments or income producers or quick cash, depending
on your needs. It is up to you.
We are faced with many decisions along the way. The doctors can help us
decide, but we need to tell them what we want.
I hope this helps a little. Regards, Elizabeth
----------------------------------
----------------------------------
Date: Wed, 30 Mar 2005 13:28:48 EST
From: Elizabeth Parcells
Subject: Get in the Boat - Therasphere radiation to the liver
Hello all,
Good news! I have been accepted for Therasphere radiation therapy to the liver
(go to
http://www.mds.nordion.com/therasphere/
http://www.mds.nordion.com/therasphere/
to see more info) and will begin in April. I am thankful for this
opportunity and hopeful that this will bring significant benefit in the short
term to reduce my liver tumor load and perhaps relieve my liver pain.
I discovered this new treatment in the Wall Street Journal, reading investor
news on medical topics. After some research online and some consultations,
I was referred to the doctor in Chicago that performs this procedure.
At first I worried that I was ineligible because the treatment is FDA approved
in this country for primary liver cancer only. In fact, my oncologist had
already ruled out radiation or surgery in my case because of my prior history
and did not believe that I would be considered a candidate for it.
But NW Hospital in Chicago does offer Therasphere treatment as
off-label/compassionate use to patients with secondary liver mets and even
extra-hepatic disease under the correct conditions. Because the treatment
is truly targeted, it will not burden my other tissues as more conventional
methods of radiation would do.
So I sent down my latest oncology records, blood work and CT scans (on CD ROM, so
cool) and waited to see what they would say. I am happy to report that I have
indeed been given an appointment for evaluation on April 11 and am considered a
GOOD candidate!
I will report back to you on my experience with it. This could be a good
treatment opportunity for some of us stage IVs to treat our unresectable liver
tumors, even in the face of mets beyond the liver. It is certainly worth a look
and a question to your doctors. But be persistent, since this treatment is new
and only offered at a few locations so far. I had to ask and ask again. Thanks
to my patient advocate at Blue Cross and some members of our ACOR list who have
had this treatment and wrote to encourage me, I too will be able to benefit.
I am reminded again of the drowning man who trusted God to save him. Only this
time, he gets into the boat!
Regards, Elizabeth
--------------------------------
Date: Wed, 30 Mar 2005 14:27:02 EST
From: Elizabeth Parcells
Subject: Re: Get in the Boat - Therasphere radiation to the liver
3/30/2005 2:15:48 PM EST, jaybyrd1@ writes: Therasphere procedure was available as early as 2001.
I'm confused by the different names (Therasphere versus Sirsphere) for what
seems like basically the same procedure ... what is (if any) the difference in
the two?
Hi,
Therasphere and Sirsphere are two like products from two different companies.
http://www.sirtex.com/
http://www.sirtex.com/
is the sirshere site,
http://www.mds.nordion.com/therasphere/
http://www.mds.nordion.com/therasphere/ is the site of the therasphere makers. Hospitals offer the therapy using one or the other product.
They each do the same thing.
I was never offered the "micro sphere" style treatment by my doctors, nor have I
seen it mentioned on any colon cancer site where one looks for treatment
options. (Or maybe I wasn't looking hard enough?) I feel like I had to go on a
safari expedition to find this out on my own. Obviously this is not yet
considered a "standard of care" treatment for liver mets.
I keep searching high and low for options that have not been mentioned yet.
This demonstrates how very important it is for us patients to be pro-active and
involved in the treatment process.
Elizabeth
----------------------------------
Date: Wed, 30 Mar 2005 14:39:06 EST
From: Elizabeth Parcells
Subject: Re: Colonoscopy
3/30/2005 2:33:59 PM EST, CWITTE@ writes: They are giving me the
runaround.
Hi Constance,
Don't let them get away with this. I hope you find lots of support and
help to make sure this doesn't happen to anyone else.
Elizabeth
----------------------------
Date: Wed, 30 Mar 2005 18:27:44 EST
From: Elizabeth Parcells
Subject: Re: Get in the Boat - Therasphere radiation to the liver
3/30/2005 5:35:15 PM EST, jaybyrd1@
writes:
I agree with you in that it appears to be an under utilized option for many with
liver mets.
It is curious that this type of therapy is so slow to take in this country when
the outcomes reported from the trials are so promising. I reserve judgment in
my own case until I actually have the treatment, but from what I have read on
websites and heard from patients, this therapy is very effective. That is
why I am so hopeful.
It is not a cure in my case or even a replacement for systemic chemo, I know
that. But relief from pain and prolonged survival are just as important
treatment goals to me. I am hoping to add at least several months median
survival time to my prognosis.
The pain and frustration of waiting for systemic chemo to control progression of
these tumors has worn me down, especially as I counted off treatments to which I
became intolerant or which stopped working. Lots of us have felt this
frustration, dreading the day when they tell you, there is nothing more.
Therasphere/Sirsphere therapy is already standard treatment in other parts of
the world, Australia, New Zealand, Asia. But I feel as though I had to "stumble"
upon it by chance in this great nation of ours. Very curious indeed! Makes you
wonder what else might be lurking out there... I will never give up
looking.
Elizabeth
--------------------------------
Date: Wed, 30 Mar 2005 23:20:48 EST
From: Elizabeth Parcells
Subject: Re: mom's hemicolectomy is done
3/30/2005 10:38:53 PM EST, makeupbuddha@ writes:
on a positive note, the dr. said she only saw one spot, which gives me hope that
if there is any spread, it is confined and can be treated more successfully than
multiple mets. on a frightening note, I've read that a met would mean a stage IV
diagnosis, and the average survival period for this stage is less than two
years. is this true? I'm so scared!!!
Hi Truc,
A stage IV diagnosis would be scary, but for now, hope for the best and try not
to be scared. The statistics you have been quoted are for all stage IVs but
there are differences. If the liver has only one lobe involved and no mets
beyond the liver are detected, then the liver can be treated effectively right
away. If this is so, even an NED (no evidence of disease) is not out of the
question. You will hear from people on this list with stage IV who have
survived much longer than "average" and some with remarkable stories.
Statistics cannot be applied to individuals, since each case and each person is
different. Who wants to be "average" anyway? Why not be extraordinary!
I pray for your Mom that she gets the best possible prognosis and the best
possible treatment! Meanwhile, don't let the statistics rule you.
Elizabeth
-----------------------------
Date: Thu, 31 Mar 2005 00:22:31 EST
From: Elizabeth Parcells
Subject: Re: Get in the Boat - Therasphere radiation to the liver
Hello Harry and Bella too,
I hope for you and with you! I will be interested to hear more, and I promise to
report back on what I learn in Chicago. April 11 is going to be a very long day
for me! Evaluation takes all day. Then I will know for sure if the treatment is
for me. Hey, I even get to skip a round of Camptosar for this, cause for
celebration right there!
Meantime, I'm praying hard for us all.
Elizabeth
--------------------------------
Date: Fri, 1 Apr 2005 23:36:28 EST
From: Elizabeth Parcells
Subject: Re: Get in the Boat - Therasphere radiation to the liver
4/1/2005 3:04:07 PM EST, lovellom@ writes:
Hi Elizabeth, I will be waiting to hear of your success with this new treatment,
tell me do you have lung mets also? I am Stage IV with multiple liver & lung
mets & at this time have an inoperable liver. But my chemo treatments
are continually shrinking the tumors.
Margret
Dear Margret,
Glad to hear that your tumors are shrinking. I hope this opens up some
more treatment options for you.
Yes, I have mets beyond the liver, to the lungs and some to the pelvic area. So
far, the chemo I have been taking since 10/03 has not reduced any of my tumors,
but at least until recently there was no progression. I'm hoping this
treatment will finally reduce the liver tumor load the chemo did not.
Good luck to you that you continue to see improvement.
Elizabeth
-----------------------------
Date: Sun, 3 Apr 2005 17:31:43 EDT
From: Elizabeth Parcells
Subject: Re: to Johann J
To Johann and all the other Johanns of this world:
Ditto and Amen to all the wonderful posts to you thus far! You see the power of
compassion and support in the list members' reactions and responses to your
plight. So much sharing and good advice!
Think about it, if perfect strangers can show you such an outpouring of love and
support over the Internet, think how wonderful and comforting it will be to have
the love and support of your dear loved ones! The Art is in the Telling. Tell
them how much you love them and how concerned you are for their welfare. Then
say you are facing a great challenge and need their love and support. Tell
them exactly how they can help you so they are not at a loss, and then assure
them that together, you will overcome all difficulties.
Find the words to tell them yourself. Sooner or later, they will find it out,
and it is far better they hear it from you first. Remember, they will need YOUR
support too. Stand tall in the truth. That is what family is all
about.
How you deal with the workplace is another matter. At work, your health issues
are your private business. Take a sick leave and the less said the better. Again, they will probably find out, but not necessarily from you. Since you are
going to recover, of course!
Your initial reaction to the news that you have cancer is natural, but you won't
be this upset all the time. When you are feeling calmer, take a hard, objective
look at your situation. Begin the great learning process we all have to tackle
to find out as much as we can about our condition and our options. Then we can
work with our medical team as pro-active partners. You will need your wits about
you as you hear test results and recommendations from your doctors and try to
learn how to interpret them correctly. Take someone along to appointments
and take notes.
The Internet is a great tool for learning about your condition and all aspects
of coping with it. You may not think so now, but knowledge can actually reduce
your fear. Know the enemy well and you will conquer it. Do not fear the unknown,
expose it. Soon you will be poised and fearless in the face of the Beast.
Faith and Trust will give you back your Hope.
Me? I am practicing what I preach. As a stage IV colon cancer patient, my
outlook is not great. But I am finding the strength and spirit to keep fighting
because I have the love and support of my family. Could I keep something like
this from them? They would not have it! I am sure your father and your daughter
love you very much. Your circle of love will sustain all three of you
through whatever comes.
Thanks for listening, Elizabeth
-----------------------------------
Date: Sun, 3 Apr 2005 17:43:12 EDT
From: Elizabeth Parcells
Subject: Re: family
4/3/2005 8:45:49 AM EST, nanaj1151@ writes:
What I've learned from all this is priceless. I've learned to not sweat the
little stuff, just fix it and go on. I've seen the courage, love and true
caring from the people on this list. It has helped fill the emptiness in my
heart. Because for a very long time all I could see ahead was emptiness,
darkness.
So right now I hope that somehow these simple words can help with the emptiness
in someone else's heart and maybe help them go on.
Jean
Dear Jean,
I am sure your words will help many here. Your story moved me. I survived
childhood cancer (by some miracle I'm told) and often times I have thought of
the many youngsters who did not. Survival is a joyous thing to be celebrated,
but a pang of sadness always lingers. I have lived my life since then with
both joy and pangs, bittersweet.
Thank you for sharing your story, Elizabeth
--------------------------------
Date: Sun, 3 Apr 2005 18:01:58 EDT
From: Elizabeth Parcells
Subject: Re:
4/3/2005 12:44:22 PM EST, micro1@ writes:
Hi again all, Can anyone tell me if I can ask my GP for some tranquillizer to
help me through the next few days and weeks???
Is it on to take something to help me or is it not advisable.
Johann J N
HI again Johann
Sounds like a good idea if your doctor approves. I was given Ativan, they said
it was for nausea and stress on the body. Only it said "anti-anxiety" on the
bottle... Slept like a baby! Later I found I didn't really need it.
I hope you begin to feel better soon. Elizabeth
---------------------------
Date: Wed, 6 Apr 2005 20:38:55 EDT
From: Elizabeth Parcells
Subject: Re: to Johann J
X-To: micro1@
4/4/2005 3:11:01 AM EST, micro1@ writes:
Of course eventually I will not have a choice, but facing them with this news,
will tear me apart. They have never done anything to deserve this much
hurt and pain that I will now cause them.
Dear Johann,
I am sorry that you are still feeling such strong emotions over your diagnosis. No one "deserves" the things that happen in life, good or bad. You can't blame
yourself for this or feel responsible for the pain of others. You have not
"caused" any of this.
Fear is the enemy. Information and knowledge prepare you for a fight to
win.
You need to find out soon your exact diagnosis and the stage of disease you
have. It sounds to me like you are anticipating the worst case scenario and that
you are experiencing more fear than need be at this point. "Hope for the
best" sounds like a platitude, but that is what you must always do in this
situation.
You only need to tell your family what you actually know, not what you fear.
It is easy to let your mind jump to conclusions when faced with uncertainty. The
doctor has told you that you have an illness, but does not know yet how serious. The cancer word has you scared s**tless, (literally!) and you automatically
think the worst. That is a trap of the mind. Waiting for results of scans and
biopsies is a test of your patience and calm. But face your fear, because
the more you know, the more fearlessly you can fight.
The good news is, the disease is caught and will be treated.
"Good news, everybody! My cancer is in treatment and chances are, I will stay
healthy for years to come! Thank God we didn't miss it!" Put like that, it
sounds like you should throw a party! You can avoid causing your family undue
pain by taking the high road of optimism when you break the news.
I have cancer. There are plenty of negative emotions that go along with that. It
is a difficult time. Yes. No doubt. It is also a time of
introspection, priority setting and a time to choose happiness and hope over
despair.
I wish you well, Elizabeth
---------------------------
Date: Thu, 14 Apr 2005 10:36:35 EDT
From: Elizabeth Parcells
Subject: Get in the Boat - Therasphere treatment in Chicago
Dear List Friends,
This is Elizabeth reporting to you on my TheraSphere treatment experience so
far. I was evaluated on Tuesday and am back home today. This will interest any
of you who are looking for targeted treatment of liver cancer or of metastatic
disease to the liver where surgery to the liver is not an option.
Turns out, Northwestern Memorial Hospital (NMH) in downtown Chicago is the only
location in the US where TheraSphere treatment is offered to patients with
unresectable metastatic liver disease. The FDA has approved it only for use in
primary liver cancer. I am being offered this treatment "off-label" as part of a
study being conducted at NMH. The title of the study is:
NU 1365-002: A Humanitarian Device Exemption Use Protocol of TheraSphere(R) for
Treatment of Unresectable Metastatic Cancer to the Liver.
I quote (paraphrase)* from portions of the study protocol and consent which I
signed before being evaluated:
*Therasphere is a "device" consisting of microscopic glass beads that contain a
radioactive substance called yttrium-90 (Y-90). The TheraSphere are injected
into the artery of the liver that supplies blood to the tumor(s). As they
flow to the tumors, they are not able to pass through and become trapped and
release Y-90 to deliver a large local dose of radiation to the tumors.
*This device is classified by the Food and Drug Administration (FDA) as a
Humanitarian Use Device (HUD). A HUD is a device used to diagnose or treat a
disease or condition that affects fewer than 4,000 individuals in the United
States per year and for which no similar device is available. The FDA approves
the use of a HUD based primarily on evidence that it does not pose a significant
risk of injury to the patient. Also that the potential benefit of the device to
the health of the patient outweighs the risks of its use. Participation in this
study does not involve investigational or research procedures. This device
is approved by the FDA.
Principal investigator is Dr. Riad Salem, MD, MBA and the supporting
institution is Northwestern University.
So far so good.
As the title suggests, the good doctor has to apply for permission from the FDA
to perform this procedure on each study patient. This is extra paperwork for the
hospital. However, the research nurse, Patricia A. Gowland, who spoke to me
before the evaluation, was extremely glad to see me and thanked me for making
the extra effort to find them and for coming all the way from Detroit to
participate. She pointed out that all of their study patients were intelligent,
well educated self starters like myself who took the extra trouble to seek out
this type of treatment study. I remarked that indeed, they sure didn't drop many
bread crumbs for prospective patients to find. I have searched for many months
for a treatment opportunity like this, combing the Internet and asking and
asking. I don't understand why this particular light is under such a bushel!
One by one I met the team of doctors and nurses who would be working with me. They are all very competent and friendly. Everything went smoothly and near
painlessly too. It was a full day starting at 8:00AM with checking in,
consultation, then the angiogram work in the OR, which I followed on the monitor
screen with great interest. The catheter was inserted into the artery at the
groin and was guided up to the liver. Contrast was released into the various
tributaries that go into the liver and surrounding organs and images made of
each. At last, the radioactive tracer substance called TechneScan(R) MAA was
injected. Surgery over with, I was transported directly up to nuclear medicine
for a scan to observe where the MAA tracers had traveled, making sure they did
not go anywhere but the liver. A CT scan finished my day and I was back at the
hotel by 5 PM. The following day I had a PET scan as well.
When I talked to Dr. Salem after the liver angiogram, he was happy and
optimistic, saying there was good blood supply to the tumors meaning that the Theraspheres would be very effective. (Hmm, ten months of Avastin had not phased
the blood vessels in my liver apparently!) He confirmed that actual treatment
will be given this coming week Tuesday. So I will be driving back to Chicago for
that, with more optimism than I have felt since this whole thing began!
Dr. Salem also confirms that my treatment goal of reducing liver tumor load and
relieving the liver pain that has worsened, is more than realistic. Again, not a
cure, but a big step in the right direction. Healing I think we call it.
So, if any of you are looking for this type of treatment, you can write an email
to Dr. Salem's Physician Assistant:
ACourtney@nmff.org Angi Courtney, PA-C (312)
926-5343
Karen Barrett is Dr. Salem's nurse and she will be an additional contact
person for you.
Karen Barrett, RN 676 N. St. Clair, Suite 800 Department of Radiology Chicago,
IL 60611 (312) 695-1791 phone
These ladies are very good responders and very friendly. They will let you
know what you need to do to apply for the study and become eligible for
treatment.
In the Bible it says, "Ask and you shall receive." But ya gotta ask loudly!
Good luck to all of you, I hope this information is of use to you.
Elizabeth Parcells
----------------------------------
Date: Thu, 14 Apr 2005 12:43:39 EDT
From: Elizabeth Parcells
Subject: Re: Get in the Boat - Therasphere treatment in Chicago
4/14/2005 12:38:17 PM EST, curecancerfirst@ writes:
I can feel the glow in you post, wonderful news. You didn't mention an HAI pump,
did you already have one, or is one to be used at all?
Michael
Hi,
Nope, no HAI pump is to be used. Those are used to deliver chemo therapy
directly to the liver over time. The TheraSpheres are injected into the liver in
a matter of minutes during the procedure itself. I have never used an HAI pump,
since my doctor has preferred to rely on systemic treatments so far. It
was my own initiative and decision to choose this targeted treatment for the
liver because of increasing pain of late.
Yes, I am optimistic!
Elizabeth
------------------------------
Date: Thu, 14 Apr 2005 15:47:13 EDT
From: Elizabeth Parcells
Subject: Re: sort of off topic...
4/14/2005 1:38:05 PM EST, rbeckler@ writes:
Okay, so am I having fun yet?
For starters, back in January, my oldest son comes home with an abandoned
Beagle. She wasn't house trained, had worms, ear infections and a belly full of
puppies. But she's sooo cute and only about a year old.
The pups are now about 7 weeks old and pooping like there's no tomorrow. Since
Lucy, the mother, can't be trusted in the house, they're all penned up in the
mud room. Every morning it's a disaster area. You can't clean it with the
puppies in there because all they want to do is play. Of course, that means play
using those same feet that have been mashing the poop into the floor all night.
I've got to let them out on the deck but now they've learned to climb stairs so
I spend half my morning chasing puppies around the yard and back in the field.
Meanwhile, Lucy's in the house. My wife (who has no love for Lucy) is away on
business. Lucy heads right upstairs and pees on my pillow. Gee,
thanks Lucy.
So, I've got two choices. Toss the pillow and explain to my wife who will want
to shoot the dog, or just wash it. I've washed pillows before, no problem.
So, I take it downstairs, give it about 5-6 rinses in a bucket and toss it in
the wash.
It breaks open.
In the washer. It's a feather pillow.
Now I've got to toss the pillow, clean out the washer, clear the feathers out of
the drains and hope the drain field's not already clogged up with feathers.
But here I am counting my blessings. It's been two years now since I finished
chemo. What's a few feathers?
Ray Age 50, Stage II, T3N0M0, sigmoid resection 8-20-02, six months 5fu/leuc
ended April 2003. Currently NED
Hello Ray,
You remind us how important the little things are in life, and never to make
little things into big things. With priorities straight and the right
perspective, the march thru life becomes a joy and never a chore.
Keep your days bright with happiness,
Elizabeth
---------------------------
Date: Fri, 15 Apr 2005 21:08:15 EDT
From: Elizabeth Parcells
Subject: Re: Get in the Boat - Therasphere treatment in Chicago
4/15/2005 11:12:15 AM EST, ssbrett@ writes:
Elizabeth: am so pleased that that the evaluation went well and that you are a good
candidate for the treatment.
Regards,
Sandy
Thanks Sandy, I am hoping for the best. I will keep reporting on this.
Elizabeth
---------------------------------
Date: Fri, 15 Apr 2005 23:48:19 EDT
From: Elizabeth Parcells
Subject: Re: Is the glass half-empty?
4/15/2005 12:40:05 PM EST, Mooncrazy@ writes:
Norma,
I'm not looking forward to my sister's PET just because of the high rate of
false positives I've heard about. The radiologist has thought on 3 occasions
that I had stuff that was suggestive for cancer and so far he's batting 0.
Hang in there.
Randi
Hi,
I had my first PET this week and will see the report when I go to Chicago again
on Tuesday. I am glad to know that this scan is up for interpretation and not
everything on it is "hard evidence" of new cancers in all cases.
I will keep an open mind when I see the report and not to go crazy if I lit up
like a Christmas tree.
Since scans are really done to help make treatment decisions, there may be such
a thing as Too Much Information (TMI).
My PET scan was done in keeping with the study protocol for the Therasphere
treatment I will be receiving, to give some baseline values for the researchers. This information won't influence my treatment decisions since I already know
about my mets. I wonder if I should see the PET report at all... but I am sure
my curiosity will get the better of me!
Elizabeth
--------------------------------
Date: Sat, 16 Apr 2005 11:18:49 EDT
From: Elizabeth Parcells
Subject: Re: Is the glass half-empty?
4/16/2005 10:46:59 AM EST, Mooncrazy@ writes:
Elizabeth,
I think you need to see all your reports if you are making the decisions. My
sister is leaving everything up to me regarding treatment , or so she thinks,
and we are going to the hospital Monday to get her pathology reports and all
radiology reports. We are assuming the Pet Scan will be ok and are making
appointments with a thoracic surgeon and an interventional radiologist to go
over options. We want to be as proactive as you have been and find the best
treatments. You have to have all of the facts to do that.
Randi
Hi Randi,
Of course you are right!
Give it all you've got!!
Elizabeth
-------------------------------------
Date: Thu, 21 Apr 2005 17:11:47 EDT
From: Elizabeth Parcells
Subject: Re: Update on Bella
4/21/2005 1:59:35 PM EST, harryrezz@ writes:
We have our fingers crossed that the improvement will continue. A month ago our
doc said that if the Erbitux was effective she might have two to three months,
and if not maybe a month. We like him a lot and trust his judgement in most
matters, but we're out to prove him wrong on his prognosis. Wish us luck! Harry,
Stage III R/C, dxed 4/04, last chemo 1/05; husband and caregiver to Bella, Stage
IV C/C, dxed 5/04; stepfather to Bill, age 36, Stage III R/C, dxed 1/05.
Dear Harry and Bella and Bill,
It is wonderful to hear that Bella has improved since last we heard. That
is one thing we worry about, sometimes it seems like we will never get better
again, and then we DO! Not only surprising the doctors, but ourselves too! Bella
is a real fighter, and I admire her.
I don't even ask the "how long" question anymore. My doctors are happy to leave
that question unasked. I am on my own schedule and no one can accurately
predict the "when." Focus on the future, focus on now.
Thank you for sharing this good news of Bella's improvement, it is very
inspiring.
Love, Elizabeth
------------------------------
Date: Fri, 22 Apr 2005 14:56:42 EDT
From: Elizabeth Parcells
Subject: Re: Good News Revisited
4/22/2005 1:34:49 PM EST, suewarner16@ writes:
Regarding good news. Has anyone experienced a recovered cancer patient or
someone who belives they are recovered doing their old stuff, but 10x more
extreme.
Dear Susan,
Funny thing you should ask... Your daughter seems to have experienced the
epiphany that comes to some people who have had a "brush with death." She has
turned her negative experience into very positive energy in her life. Her
actions are consistent with the values she has always held, but the "more so"
comes of realizing she has been procrastinating and putting off things she
wanted to accomplish with her life. She is in a hurry to make up for "lost
time." This is actually a very good reaction. I think you will find a
number of people on this list who have reacted the same way.
I had childhood cancer diagnosed when I was 22 months old in 1953. I was given a
10% chance of surviving, prognosis poor. With what was then experimental
radiation therapy, ten cobalt treatments in one month, my tumor began to shrink. I was closely watched until I was nine years old, when another exploratory
surgery was performed. The tumor had gone benign and could now be removed
safely. I was cured. Nothing short of a miracle, they said.
The "miracle" was not shared with me until I was twenty, the C word being taboo. I had always know there was something wrong or different about me, since the
cobalt had damaged me severely. But no one shared the bad news/good news with
me. Things would be quite different today, I'm sure, in our open book
society.
When I did figure it all out, I had the overwhelming idea that I should do
something very meaningful with my life, something outstanding and wonderful. I
knew I would never have children so homemaking was not to be my path. I worked
very hard on the one unusual talent I possessed and became a singer, and a
pretty good one at that! Living on the edge as a cancer survivor, I devoted my
career and all my energy to my singing. I had always wanted to sing, but my
drive and ambition were far greater than my rather shy personality would have
indicated, and people were forever underestimating me. But my "more so" made me
want to be more than anyone expected. I struck the word "normal" from my
vocabulary and surprised the people again and again.
Now, after a very interesting life and career in music, I am 53, have stage IV
colon cancer and am looking back on my life as a survivor. I am glad I have this
time of reflection to understand it all. True to my pattern up to now, I am
trying to be more than expected, to live longer, be healthier and stronger than
my chart would indicate. In this crazy race against cancer, the object is
to reach the finish line as late as possible, and if necessary, be dragged over
it kicking and still fighting.
So the "brush with death" thing can be a powerful motivator to do something good
and meaningful with your life. Adversity really can bring out the best in a
person. That's what I call looking on the bright side.
Elizabeth
-----------------------------
Date: Mon, 25 Apr 2005 15:36:19 EDT
From: Elizabeth Parcells
Subject: Song without Words
4/25/2005 5:06:42 AM EST, strongsgifts@ writes:
The hardest thing right now for me is that there are many people who I
considered friends of ours over the years that have not even contacted me to
express their concern. No card, nothing. That really hurts. A
mutual friend of some of them told me that they wanted to see me but didn't know
what to say to me.
Hi Sheila and list friends,
I was struck by this comment about the difficulty people have communicating
their concern when tragedy strikes. I think all of us have felt this type of
isolation. It disappoints us that even our friends and family are at such a loss
for words that they end up saying nothing at all. And it does hurt.
Perhaps a little guide book on what to say when there is nothing to say would
help out in this situation. We recently had a thread on "What do we tell the
patient." This thread could be called, "Words that Comfort."
I find that most people react to bad news by trying to say something
encouraging. Often their well intentioned comments backfire because they set
aside or gloss over what they have just learned. They might try to say, "But
cancer is so much more curable these days, isn't it?" or "If anyone can beat it,
YOU can." All they needed to say in most cases is, "I am so sorry.
Is there anything I can do for you?" When appropriate, a nice hug is very
comforting too.
Being in the company of the grieving can feel terribly awkward for many people
and so they simply avoid it. If these folks had a little arsenal of comforting
words they could rely on, they might be less afraid to confront the situation.
Again the old stand-by, "I am so sorry, is there anything I can do?" is never
misplaced.
The bottom line to saying the right thing:
Acknowledge the grief, bad news. (Denial is not comforting.) Be sincere in your
helpfulness, show support and love. Be willing to listen.
The other side of the coin, of course, lies with ourselves, the afflicted. We
may as well accept the fact that we will need to reach out and break the ice
with the people who have been avoiding us if we don't want to continue to be
isolated from them. We may well have to reestablish contact with them ourselves. By doing so, a tense situation that will only worsen with time can be resolved. The friends and family you reach out to will be relieved and glad that you let
them "off the hook."
As a patient with advanced cancer (the polite word for terminal) I felt a strong
urge to reach out to as many old friends and family as I could. It paid off
wonderfully in waves of support and love from them. My campaign culminated in my
trip to NY in February to sing at Carnegie. It gave me a tremendous lift to see
so many friends, some I had gone to school with thirty years ago and had not
seen since! What a great reunion it was!
I could burst into song at this point, something about lighting just one little
candle... but I won't. (Whew!) We have all learned from our experiences how rare
and precious those people are who step right up and do and say just the right
thing for us in times of trouble. Most of us are far from perfect in this
regard.
The moment you begin to feel lonesome and isolated and you want your friends to
be around you, invite them back into your life. Set the tone and let them come
in. And if they don't know what to say, never mind. Sometimes Life
is just a Song without Words.
Thanks for listening, Elizabeth
--------------------------------
Date: Thu, 28 Apr 2005 18:46:13 EDT
From: Elizabeth Parcells
Subject: Get in the boat - Therasphere continued
Hello all,
This is Elizabeth reporting back to you on my experience with the TheraSphere
treatment so far. You may recall: TheraSphere (R) is an FDA approved device for
targeted radiation treatment to the liver. (Another company produces a similar
product called SirSpheres.) So far, the FDA approves it's use on primary liver
tumors. But I have joined a study at Northwestern Memorial Hospital in Chicago
with Dr. Salem to evaluate its use on metastatic liver disease. The hope is that
the FDA will approve a broader use of TheraSphere to help more patients.
TheraSphere website
My case: CC dx July 2003 at stage IV with mets to liver and pelvic area. Surgery, permanent colostomy, chemo FOLFOX as first line, then 5FU and
Leucovorin plus Avastin, lately, camptosar alone. No progression apparent until
March 2005 when lung mets were noticed and the liver tumors began increasing in
size. Last few months, increasing liver pain and increasing bone pain in
the right chest wall.
I have been down to Chicago twice now. The first trip was for evaluation on
April 11. My sister drove me in her van with an air mattress in back for me to
lie on as I can't sit in the car for that long. We stayed at the Wyndham Chicago
which is steps away from the entrance to the hospital, very convenient. And they
offer patients of the hospital a nice discount!
The day at the hospital began with signing in and getting the paperwork done,
filling out forms with redundant info that I like to call the "Patient Literacy
Test." We met the nurses and the doctor briefly. The team is young and energetic
and very capable. Then I prepped for the procedures of the day: a liver
angiogram, imaging the angiogram, installing "coils" in veins to contain the
spheres, and finally the release of tracer TheraSphere. The procedures were long
but virtually painless. Immediately following this, I was wheeled up to nuclear
medicine for a scan to see where the tracers had gone to. After this, a CT scan. By the time all this was over and I was released, it was 5PM.
The following day I had a PET scan to finish the evaluation phase.
One week later, on April 19, we were back for the actual treatment. The doctor
told us that the scans and tests were all very good and showed that I was a good
candidate for the treatment to the right lobe of the liver where the two large
tumors are. He said I could expect good results from the treatment to reduce the
size of these tumors and to relieve pain. The actual procedure was fairly brief,
since all they needed to do was access the artery as before, bring the catheter
up to the liver and then release the TheraSpheres. I was discharged with
instructions and a few prescriptions.
Again the procedure itself was painless. I did have some nausea the first
several hours afterwards. Also fatigue is an issue. The past week has been
tough. For some reason my stomach decided to act up and I was unable to take my
pain med for three days. I called the nurse in Chicago and asked if this type of
reaction was expected after treatment. She said no, but that I might have some
unrelated GI problem going on and suggested I take anti-nausea meds for it. The
tummy upset lasted about two days, but now I feel all right again. But the
treatment itself seems to have caused me no severe problems at all.
On May 17 I will be back for my 30 day evaluation and will be able to report to
you on my progress. The hope is that the liver pain will be less and the tumors
significantly smaller. I'm crossing my fingers!
Hopeful, Elizabeth
PS The PET scan lit up an area in the right chest wall that is "suspicious" and
may explain the pain I have been having in that specific area. This is a
separate problem from the liver, and I will address it with my oncologist
tomorrow morning. I'm told that local radiation can relieve pain from bone
lesions, so if that is what this is, that is what I hope to do for it. So with
this darned metastatic cancer, it seems like you are constantly putting out