December 17, 2008 at 10:48 pm #21245darlaParticipant
I am no expert, but for what it is worth, I think you made a good & logical decision. Only you know your body & only you can decide what is best for you. That may change in the future & that is OK too.
My husband passed away on Sept. 2 after only 7 weeks & I often wonder if it had been found sooner & treated, would it have given him more time. After learning more about this disease, I now feel that not knowing was the best as he did not have any symptons previous & who knows what we would have all gone through had we known, There really is nothing good about this horrible disease, is there, but atleast he did not have to suffer for too long, I now how to learn how to go on alone. I have to admit that at times I also do not feel too strongly about having any reason to go on, but I know that I need to be strong as it is what Jim would want me to do. I think you are strong too, as you have made this decision.
I am sure there are others who have decided on the no treatment option & you will be hearing from some of them soon.
I am so sorry to hear that your Mother passed away so suddenly & then you had to deal with the failed surgery so soon after.
Know that you will be in my thoughts & prayers.
Take care of yourself & stay strong.
DarlaDecember 17, 2008 at 8:20 pm #21244
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.
IreneDecember 15, 2008 at 3:50 pm #21243darlaParticipant
Just found this interesting discussion. So I will put in my 2 cents for what it is worth. In my husbands case the theory is he may have had this for 30-40 years with no symptoms until about 2 months before he passed away. It was interahepatic & had not spread beyond the bile ducts. If that is the case, it is very slow growing & since he never had any treatment, my thought would be that with or without it is still slow growing. He also was always thin and healthy. Very active and did not smoke or drink, however he did in earlier years. Diet was another thing. He ate whatever he wanted to never having a weight problem. Just thought I would add this to the mix. Don’t know if it will be of any help to anyone.August 4, 2008 at 12:44 pm #21242lisaParticipant
When I was first diagnosed, I was in and out of the hospital a few times. I had infections in the stents. I lost weight in the hospital. Then I had exploratory surgery in March, which caused me to lose even more weight. I gained it all back and then some this past couple of months. I’m the kind of person that likes to be physically active, but I really don’t have the energy for it right now.August 3, 2008 at 8:51 pm #21241pattibParticipant
Hi again all!
All these bits and pieces of our stories are fascinating, although a bit confusing. If I can ask….
Lisa, what caused you to lose weight in the first place. You said you went on chemo and are gaining weight “back”.
Irene, when were you diagnosed? Has anything changed since?
To all/anyone – have you all gotten sick, not been able to eat, on chemo? For how long? Just when dosed, or for a few days, through a whole series? Or is it the cc itself causing the problems?
Anyone on oral chemo? Xeloda? Does that make you sick? My onc seems to think that taking oral chemo is “better” but I’m not sure why… other than “convenience” by not having to go in and be poked, etc. To me, having to take 8 pills a day on a schedule is VERY inconvenient!
I’m currently on Xeloda, and have been since February 08. I take 2000mg, 2x /day. Evidently that’s a healthy dose. I’ve taken Gemcitibine & Carboplatin, followed by Gemcitibine & Taxol – which was the only one that made me feel a little sick and of course lose my hair. Then 16 weeks of no RX, and now, as I said, the Xeloda. None of the chemos caused ANY shrinkage. They ALL seem to cause fatigue.
Irene, If you try a chemo, you don’t have to assume it will make you really sick, at least that’s not been my experience, and that’s one person! Who knows if/how much they have weakened my system though. Each of the intravenous cocktails were stopped after two series (4 or 5 sessions). They were stopped because of no shrinkage and my first onc said to “save” them if they in fact were effective in slowing/stopping growth. But who knows?
The big thing for me was in FEB one of my tumors did grow a bit. I don’t remember exactly now, but it was 10ths of a cm. (not a lot). BUT it was the first time I showed measurable growth and that was after almost 4 months with no treatment at all.
I’m beginning to wonder too, as you’ve mentioned, if I should just stop treatment and see what happens. But, unlike Jeff, I’ve had no surgery, and I don’t know if cutting it out, or most of it, slowed things down, or if it was slow-growing in the first place. Without surgery, I’m more afraid to try it (again). Given that the Xeloda doesn’t affect me other than fatigue….
Anyway, my CT scan is next week, so we’ll see how that’s going. My last CT showed no change, this one will be after 5 months of Xeloda – that should say something! My new onc said I could take a month off if it’s still no change, but maybe I can risk a longer period of time, I dunno. I HATE that I’ve not had 20 yrs of medical training, but I’m the one who has to decide this stuff!August 3, 2008 at 1:40 pm #21240lisaParticipant
This cancer seems to attack us in so many different ways – as individually as each one of us. If only we had a magic bullet and could say “aha! I have the solution!”
Jeff’s survival after so long is quite remarkable. Then we are sad at Barb’s passing a year after diagnosis. What makes the difference in survival?
Irene, I have the same tumor in the same place as you. I’ve decided to go with chemo and am so far doing well and gaining weight back (much to my chagrin). I’m thinking of going on Slim-Fast this week.
My last CT scan showed minimal shrinkage, and dilatations in the bile ducts. We’ll stay on this regimen until it doesn’t work any more or the tumor is goneAugust 2, 2008 at 6:10 pm #21239
I was 43 when diagnosed. I just pulled out my Operation summary. I was grade 3, stage 4 is all I can make out. There is another report somewhere with the full staging code, but do you think I can find it.
My left lobe of liver had 14x10x9 cm mass. Resected with 7mm margin
My gallbladder resected due to 6mm adenoma
2 lymph nodes of inflamatory state excised from hepatic artery
Right lobe of liver had 2mm cyst in segment 5 and also hemaginoma also segment 5
In light of of these additional findings, resection was undertaken. I guess they almost aborted, but probally found me to be a good specimen to operate on.
Carol, if you look at my picture on the site you’ll see that skinny cancer look on me as well. While looking at the picture imagine my neck area as a size 18. I too go through that same sequence, loose and gain a little, but like you said slowly loosing each time. That’s why I decided to stop chemo for at least three months to see if there is any possibility left of gaining back enough wait to get rid of this skeleton look or at least maintain. We’ll see what happens. probally should have tried sooner. I am now having the thoughts that chemo really did not do all that much overall other than initial shringage and held it at bay a couple times, that maybe it was just the slow growing of the cancer period. Oh well , it’s water over the dam now. Those were my choices and I have to live with the consequences. Did I shorten or lengthen my life. The fight is not over yet. Personally, I still feel positive energy and going to push on. I will be going backwards now and try some of the previous alternatives like IP-6 with inostol and immpower to try boosting my immune system hoping that will allow me to gain back some weight. I’m also pushing on with EFT as I’ve truly had some positive experiences practicing it. Who knows what will happen? Irene, I had surgery but recurrance to the left lobe and both lungs. It was not recurrance either .It was there but to small to see. Like I mentioned above, all we can do is follow through with the choices we make.
God’s Bless You Guys!
Jeff G.August 2, 2008 at 5:17 pm #21238
Hi Jeff —
Wow — a lot more to think about!
When you say you went five years, do you mean five years after diagnosis with no surgery or chemo or radiation? That’s what I think you mean.
If so that’s stunning — and I think it says a lot — both about you (though anyone on this site knows when an amazing, inspiring, and funny fighter you are!) and the unpredictabilities of the disease.
I have one single tumor about 6 by 6 cm. It is essentially lying on top of hepatic vein/inferior vena cava and one other artery that is apparently rather important. If it were in any other location it would be sort of a no-brainer to do surgery and take it out, but the chance of not getting it all remains very high, the chance of killing me is high, the chance of post-op mortality is high, and the chance of recurrence is astronomical. ALso could be in at least one lymph node.
So I am advised to try chemo (will finally see an onco next week) in hopes of magically shrinking tumor and pulling it away from those pesky veins and arteries.
But I am completely asymptomatic and bloodwork is completely “normal.” Ca 19-9 is elevated but not stunningly (its 65) — so for me, it feels like committing to what will be the rest of my lifetme being unwell (from chemo to chemo to maybe horrible surgery back to chemo etc) and I wonder if there isn’t an argument to delay any treatment until we see growth and ferocity in the tumor.
IreneAugust 2, 2008 at 3:13 pm #21237carol58Participant
Jeff, was your cc found at an earlier stage and you were in your 40’s? I hope you don’t mind me asking.
Lots of wondering.
Charlie has always been a stick and he’s now even a slimmer stick, but I love him! He has good slim genes from his parents before him. He’s always been around his high school weight. I’ve often thought it’s too bad I couldn’t give him some of my extra ample padding. He’s got that skinny cancer look about him now. Wish I could fatten him up. Believe me, we’ve tried everything. His problem is he loses weight very fast after chemo when he’s sick and then it’s hard to regain what he lost when he’s feeling better. So he gets a little further behind each time. Strength and prayers to all.
CarolAugust 2, 2008 at 2:49 pm #21236
Irene— I took that gamble and went over five years with no treatment other than monitor growth by ct scan every three months. In fact when I started chemo I was still doing okay. I even had micro mini mets in lungs for about fours years. I only started treatment because the size of tumor onn my liver had gotten approximateky 8.5by 6.8 in diameter and decided I should probally try something. To this day I cannot say whether chemo did me any good at all. If anything maybe broke my body’s defnse down and created some problems. Radiation twice. Once to liver and once to lower spine area approximately one year ago. both shrunk and remained stable as of today. Wish you the best Irene! You can only trial and error these treatments as your right, nobody knows for sure. In my opinion I would try staying on any one type of regime no more than three months maybe four. If it is not showing anything positive. By then it’s time to move on. Where are your tumors ? did anyone talk about some type of radiation? or HIfU? I took radiation 3-d conformal straight to one side of my remaining lobe of liver which was a big gamble, but it seemed to have payed off.
God’s Strength with making the tough choices!
Jeff G.August 2, 2008 at 3:33 am #21235
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 —
IreneAugust 2, 2008 at 2:58 am #21234
Wow! some heavy thinking going on. No punt intended. I have one idea that struck me. What dosage level of chemo is all of us getting? As this stuff searches for cc cells it has to kill good cells. Maybe the more we weigh means more cells to kill before causing an unhealthy effect or side effects. I too was overweight. The initial surgery dumped about 40lbs, but I gained most of it back. After about 3 years of chemo and radiation I’m back down about 40lbs again. Actually closer to 50 lbs. Now that I have decided to stop chemo for three months and try alternatives again and EFT, my weight is starting to climb again. Lets see how the next three months go. Next Ct scan is scheduled for October 31,2008. I will monitor my pulse and BP until then maybe have a lab done in between. Right now I’m sitting 10 lbs over my high school graduation weight of 165. While in the later years of my military career, I was expected not to go over 186 for my height and body fat measurement. Well enough is enough ,if I can get back to at least 190 and maintain that’ll give me a little in reserve for an emergency or something. The other 30 is gone I think . I also wonder how long my cc has been with me as well. I use to be anavid donater to the Red Cross blood drives. Are their test good enough to pick up on cc or are people recieveing cancerous blood? There’s a question for you all. Bestest to you All!
Jeff G.August 1, 2008 at 5:00 am #21233sophieMember
Hey, I might as well add my (ahem) voluptuous structure. I have always been really really overweight but quite active. I had a CAT scan in late 2005 and it was normal. Then the CAT scan in early March 2008 showed cc on 75% of my liver. Who knows when it started growing after the 2005 CAT scan so I don’t know if it’s fast or slow. Since April 2008 I have lost 50 pounds. The past 7 or 8 weeks I have maintained ..up a pound…down a pound.
Prayers for you all,
SophieAugust 1, 2008 at 3:27 am #21232belleParticipant
Hello to you all. My sister was quite overweight as well. Like many mentally challenged adults, food was one of her comforts and joys. She has lost close to 50 lbs. Her cancer however is no lazy ass cancer. More like hyper and all over the place Ha! as Jeff is wont to say. I think, reading back all the posts and scratching my not so scientific head I have to say no parallels whatsover!!!August 1, 2008 at 12:20 am #21231
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:
Again — strength, all.
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