irenea
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Sophie —
I feel like I know you since we joined up here at close to the same time.My every good wish and thoughts are with you. I know there are no right and wrong answers in how we call choose to deal with this awful illness.
I think that threatening to go the newspaper may be a good insurance company strategy — no insurance company wants bad press.
Thinking of you,
IreneHi —
Just wanted to say I empathize.
My attempted surgery was a failure, but before surgery I had read an awful lot and it doesn’t seem as if what you are experiencing is too uncommon. Many people here have talked about taking enzymes to aid in post-surgery digestion.
Back pain is also common; I wonder if a short course of narcotic pain meds wouldn’t help disrupt the pain cycle. They do make pain meds without the tylenol (which is so hard on liver).
And like everyone here, I SO understand how ANY ache or pain makes you think the worse.
You’re not alone.
–IreneHey Lisa —
Sending all my best wishes and good thoughts your way. Somehow, we go on, don’t we?
-Irene
Hi All —
I want to thank you for your considerate and heartfelt replies. There are different opinions out there, as I expected, and I appreciate all of them. Especially you, Suzanne — we started in similar places and I completely understand the decision that you made.
I don’t know how I will proceed. I know that on some days, the whole “is today the day I begin to die” thing gets pretty old and I don’t see much point to…much of anything, really. But I guess that is to be expected.Peace and courage to us all,
IreneHi Hans and Kris:
Wish I had magic solutions for you (and the rest of us here) but I do want to say that we are all thinking of you and trying to send vibes of strength, peace and courage.
Irene
Hi,
I guess I will offer my two cents — though not sure it is even worth that much.My tumor was first found (incidentally, no symptoms) in April 2008, and I was finally diagnosed in July 2008. I had a failed surgery in September 08, and since that time, I have chosen no treatment whatsoever. I consulted with two oncologists: one was and remains insistent that I immediately begin chemo; the second doctor felt as if there was merit to my decision to do nothing for as long as I remain “healthy.”
At this time I remain without symptoms, except fatigue. So little is known about this disease, but I believe that as time passes, doctors are going to become less inclined to advocate for chemo/radiation immediately in cases where the person has the tumor but is not yet symptomatic.
I recognize that I am on borrowed time, but based on everything I’ve read, I do not believe that — at least in my case — chemo would be of benefit in the long or short term.
So there — two cents worth…
Peace to us all,
IreneI am so very sorry for your loss. I do believe the folks we lose can feel the love on the other side.
Thinking of you.
IreneHi All:
Irene here, the original oddball who posted this topic months ago.
Thought I’d offer a brief update for what it worth.
Like a few of us on this board, I had one of those “incidental” findings of the tumor (my CC is intrahepatic.) Tumor was first seen in April or May of 2008 and received definitive diagnosis in July 2008. Had failed surgery in Sept. 2008.
Since that time I have chosen to have no treatment whatsoever. Interestingly, an oncology resident was supportive of this choice, while the seasoned, older-generation onco was appalled. There was some discussion of using two chemo drugs; radiation was not considered a good option as the tumor is too big and was wrapped around (or very nearly) the IVF.
I think I’ve made a reasoned decision given what little is known of this disease and how it progresses. To be honest, I do question my own motivations somewhat as my mom died very suddenly — just days before my failed surgery — and I guess I will say that in some ways, there isn’t a strong will to live for me.
I have many theories on CC (as so many of us do) and I do think that in some odd way, my being overweight is providing some protection for me.
At this time I have no noticeable symptoms, with the exception of a never-ending and unsolveable fatigue. I imagine there is an emotional component to that as well.
Anyway — I wanted to post the latest and am curious as to whether any other folks are pursuing the “no treatment” option.
Irene
Hi All:
I think the real message is that this awful disease takes a different path with every single person. Like some others here I was and remain symptom free, with perfectly normal bloodwork, including liver fuction. I have the intrahepatic type. MY choice it to take no further treatment until such time as I am symptomatic or bloodwork/CT indicates movement. This is a personal decision for everyone, obviously, but in my case I believe introduction fo toxic chemicals will not only not help but may accelrate growth of tumor.
Irene
No one knows, and no decision is right or wrong.
Hi Lisa:
Sorry to hear you are still feeling not right.
My weird theory of this diseases (based on…nothing) is that our bodies work hard to fight the cancer and as a result we have these ongoing bouts of fatigue. Not sure if this makes any medical sense, but in some odd way, I envision the fatigue as a sign that my body is using all its forces to otherwise keep me “well” (relatively speaking, of course.)
In my case while an underlying fatigue is always present and has been for over a year, I find that acute extra fatigue tends to settle in and then resolve.
Thinking of you, and strength.
Irene
Hi Everyone:
Thank you again for hte good thoughts. I cannot get myself together at all. They did beat me up prettygood before deciding to end the surgery — four or five surgical incisions around the abdomen which are still pretty uncomfortable.
Sophie — they did not call it cirrhosis, bur interestingly, the first biopsy of the tumor (I got to have two of those) was useless because they got “only” scar tissue and not tissue from tumor itself. This seems to tell me that cirhossis or fatty liver or ecarring or whatever was a huge possibility, and I am quite angry that there was no distinct biopsy of the liver itself (and not just an effort to get tumor tissue) prior to surgery. If I’d known months ago surgery was not an option, I think things might have proceeded differently.
Also I do have the intrahepatic kind and it is very cvlose to the hepatic vein so transplant not an option.
I see the doc again end of the month. In the mean time I have no symptoms whatsoever and my plan is to accept no treatment whatsoever until, at least, the time when symptoms occur. I don’t see a strong enough argument to do things any other way.
Strength to us all,
(or as Dickens said, Bless Us, Everyone.)
IreneHi everyone:
Just to let you all know surgery was a no go. Surgeon found my liver was not viable (fatty and also greatly excessive bleeding) so things were stopped. Do not think I will accept chemo or any treatment at all at this point.
IreneLisa —
Thinking of you — all of your posts demonstrate this incredible grit and determination and strength.
You are strong. We are all strong. We have to be.
Fondly,
IreneHello,
I thank you so much for your kind and incredibly comforting posts.
As an update: I did try to delay ther resection — for a week, at least, just to give myself the smallest time to heal emotionally — but the surgery feels like we are so close to being non-resectable now that I can’t afford to wait.
So…I march forward, through the tears (and boy are there tears). Tomorrow is surgery.
I know you all send good thoughts so I don’t need to ask. ANd I fully expect that my mom — accompanied by our beloved old family cats — will be watching over the surgery and get me through it safely.
Courage to each of us. And love.
Irene
