irenea
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Hi Jeff —
I know — my brain hurts from all the thinkin’!
I am just very curious about the different experiences people have with this — from diagnosis to progression.
At this moment I am on no chemo, no treatment whatsoever. May do a course of chemo to see if we get some tumor shrinkage so that, theoretically, surgery might be less likely to kill me. Part of me wonders if I don’t have one of those “lazy ass” tumors and whether there is an argument to be made to not do any treatment at all until I become symptomatic.
I wonder if age, weight, intrahepatic versus extra, etc. etc. — mean anything significant in terms of progression of disease. I wonder, literally, if those of us who get diagnosed in our 40’s incidentally (with no symptoms) would otherwise go on for months or years without a lot of tumor progression if no treatment is done. No one can know, of course — and it’s quite a gamble. Like a lethal Powerball….
Strength to all —
IreneHi Sophie —
Just wanted to say am thinking of you and I sympathize. Just getting through each day — with this lethal timer over ours heads all the time — is hard enough. But the days when you have to fight with the insurance company, with the appointment secretary, with anybody — can just knock you down.
Take It Easy But Take It (as Woody Guthrie once said),
Irene
Hi All:
Thanks for all who took time to reply. I think the responses are very interesting indeed.
I wanted to be clear that I am in no way trying to find a way to place blame (on myself or anyone else) in terms of why we were all struck with this awful cancer. As I am struggling to understand and cope with my suddenly extremely limited life expectancy, I am stuck on the whys and hows (I am a Sherlock Holmes fanatic — is this obvious yet?)
We know cholangio is rare and therefore there’s very little research out there, on treatment or causation or prognostic factors.
As I’ve read replies here I am struck by the number of people who seem to have the “slow growing” (though I like the clinical term “lazy ass tumor” too!) Not anything you find referenced in the literature. It makes me wonder just how long this tumor can sit there and cause no problem.
Also remain curious if there is any sort of odd weight component — whether the fact that some (mostly with the intraheptaic form of CC, it seems) never get a lot of symptoms,including loss of appetite or weight, means anything at all.
If anyone is interested, here is the link to the article I read yesterday about the man who had gastric bypass surgery and then was found to have CC:
http://www.obesity.org/casestudies/casestudyapril.pdf
Again — strength, all.
IreneHi Jen —
First let me say what a lot of others will say — we’re sorry you have a reason to join the folks on this site, but welcome. This is a comforting and informative place.
I am recently diagnosed as you dad is; the questions feel like they will never stop coming and they really do not.
If you look around this site you will find links for major CC centers as well as personal experiences with many places. Seems like you are in a decent location — Penn Medical has a good repuation, and Univ. of Pittsburgh a great one. People on this forum have also had good things to say about FOx Chase.
Understand completely the travel issues — you want to find the best treatment, but you also need to find a place that you and your dad can reasonably access and stay in contact with.
While the diagnosis and prognosis are bad, there are advances in care and stabilization taking place all the time. There may well be avenues of therapies to get your dad comfortable and stable for some time, although cure is an elusive thing for most.
You will want to begin immediately collecting copies of all medical records — progress notes, bloood work, CT/MRI/x-ray reports and films (these are generally available on CD), etc. In almost all cases a second opinion is warranted. In any case, as you learn more about the disease,you will better be able to make sense of his lab results and what they mean.
This is a rare cancer in the U.S., and I am not sure at all thant anyone place or doctor is an absolute expert.
Take care — and there are a lot of people here who join me in saying: Courage and Strength.
Irene
By the way Sophie — I agree the differences in opinion and lack of discussion among the providers is staggering.
Do you know you will be taking for chemo and what to expect for side effects? Do you have a timeline?
Hi Sophie (and all):
Had decided to proceed with surgery. Then got my second opinion and that surgeon was extremely pessimistic about surgery and whether I can live through it. Tumor literally right on top of vena cava and other vital veins and arteries — seems a hilarious Catch-22 in that to remove the tumor there’s not much choice but to remove veins essential to sustain life. ALso looks like lymph nodes more involved.
Not sure what to do. There is talk about doing some chemo to see if the tumor not only shrinks but magically shrinks in the right direction (that is, away from the veins/arteries.) Not much hope there. Part of me wants to do nothing at all until I begin to have symptoms — I’m not convinced there’s much to be done in any case, so why become sick earlier and permanently than I would anyway?
Some days with this are just so hard….
Courage,
IreneHi —
I just want to echo that advice about taking Time Outs. It may not solve anything, but taking some time to relax/have fun/ and tune out this horrid disease — even if its just a few minutes or hours — is absolutely essential.
In the course of making all the decisions, appointments, doing research, panicking, etc — it is hard to make your self take time like this. But do it.
Irene
Joyce —
I have no sage advice. But please know so many of us out here are sending every good thought to you and to Butch.
Irene
Hi Sophie (and others):
I can’t tell you how much I appreciate the wisdom and support I’ve found here.
Sophie, your story has many similarities to mine and I have followed your posts closely. This thing just brings heartbreak after heartbreak, doesn’t it?
I know strength is the key here. And hope. Some days it is so hard to muster.
Thank you all — and strength.
Irene
Hi All:
I appreciate the perspective and again, thanks and good cheer to all of you.
In my more rational moments I am grateful that I may be one of the lucky few who can have the surgery. It’s just that there are the moments when the whole process, its aftermath, and the possible outcome become so overwhelming and painful.
Irene
Hi —
I just wanted to say (as I am sure many others are thiknking) that this sort of input from the doc is deplorable. In the brief time since I have been diagnosed, I have much appreciated the frank discussions with providers and the candor. I am sure it’s a difficult balance for them, trying to offer hope while not creating unrealistic hope.But in this case, the doc had no ongoing info on which to reach such a conclusion, and more to the point, has absolutely no business sharing this opinion with your family.
Hope and spirit is what keeps many of us going, whether its CC or other unfathomable challenges. To treat that spirit in such a manner is unconscionable.
Irene
Hello All:
More questions I hope folks can hlep me with me. As you all have experienced, this diagnosis means suddenly trying to become an expert in something you had no awareness of 2 weeks ago.I just gor recent bloodwork back, including first tests on tumor markers Ca-19-9 and CEA; also had my second AFP test.
Results are 68.0 on Ca 19-9, and 0.9 on CEA (which seems to be a negative reading.) AFP level if 3.0, the same as it was 2 months ago.
My question is this: how significant is that Ca19-9 number? Is this good news (that its clearly high but not hugely so) or is it really only clinically significant that it falls into the reference range for CC?
Thanks for guidance.
Irene
