July 31, 2008 at 11:43 pm #21230chrissy23Participant
well, you have all of us. I think it is really up to you whether you diet or not. I haven’t changed the way Chucks eats. If he wants a cheeseburger. God willing….. he will have a cheeseburger and if he can get it down then SCORE!!!!!!!! I just want him to keep on the weight while going through chemo. Surgery was what caused chucks to loose all the weight and since he just never was able to put it back on. Now I feel like I force him to eat things that everyone else says are bad but the doctor says “go for it. Keep the weight coming” It’s a personal choice. I try to have him eat as healthy as possible without taking away that good fat and protein.
Christina.July 31, 2008 at 10:29 pm #21229pattibParticipant
Seems we’re talking about several things. Irenea said, “I am curious as to whether weight seems to be any sort of factor and whether it seems to have an effect on outcomes and speed of progression.”.
So we have “cause” questions, (which personally bug me because of the way-too-easy blame game) Then we have “speed of progression” and “effect on outcomes”.
I was a skinny kid and didn’t gain a lot of weight till my late 40’s when my thyroid went crazy and I gained 40lbs in 2 months. But, I have had problems with “irritable bowl” for ages – undiagnosed and mostly ignored. I’ve read that those sorts of problems can irritate the bile duct and possibly eventually cause cc. Even so, I’m firmly in the camp of “who cares?” It doesn’t matter now if something I did, or didn’t do, had an impact on my getting this cancer. I have enough to feel bad about without adding past guilt to my plate!
The speed of progression issue is interesting in that since cc is often diagnosed late, it makes you wonder how long it was there before found. My docs, too, mentioned that they thought I’d had it for a while – because I had many tumors in my liver, and they couldn’t actually find the source. So if it’s been “indolent” all this time, that could be years, right? Maybe decades as Chrissy23 mentioned? It sounds from this posting that maybe slow-growing cc is not as odd as I thought – even after it is found?
Then there is the whole weight loss “weight to lose” issue. That confuses me because I haven’t had much nausea from chemo, no loss of appetite, etc etc. Yet many others have extreme problems that way. I figured that the big difference is if you have blockage and jaundice and those kind of problems. Does “intra hepatic” and “extra hepatic” make that much difference? Is it having major surgery and all those consequences affect weight loss? I don’t have the choice, but I am curious.
I expected to lose weight after a year of chemo, but no……. if anything, I’m hungrier now than I used to be (probably stress). I don’t know if I have that to look forward to, or if having 50 extra pounds is a good buffer, or what! Everyone says that the more “fit” you are, the better you can fight the disease. I’ve wondered if I should diet. Have others made drastic changes in their lifestyle after diagnosis? (Other than those imposed by treatment or cc itself that you have no choice about).
Sorry if I’m running on and on. I don’t have anyone here to talk to about the disease itself , so I guess once I start…..July 31, 2008 at 9:46 pm #21228marionsModerator
Kritin….you are making an interesting point….for a while many of us were wondering about the connection of being physically fit such as being a runner and this cancer.July 31, 2008 at 6:57 pm #21227dldctMember
My mom is a bit different – she was pretty thin most of her life. Just in the last five years she may have been five to ten pounds overweight – which was good since she lost that and more. For awhile, she was losing a pound a day. I think drinking her boost helped stop the loss. Her doctors also think her cancer is slow growing. They believe she had this for two years before she was diagnosed.
DawnJuly 31, 2008 at 6:50 pm #21226kristinParticipant
I’m not overweight, never smoked, quit drinking 19 years ago, have run 18 miles a week for the last ten years, and can do straight-armed push-ups (= “boys’ pushups”) at age 50.
More evidence that this disease has no rhyme or reason…July 31, 2008 at 6:28 pm #21225marylloydParticipant
My husband was overweight too when he first got sick. In fact that was why he couldn’t get an indiviual health insurance policy or add’l life insurance. He was overweight and had high blood pressure. He lost 70 pounds initially but has put about 35 back on.He needs to lose about 10 again to be at an ideal weight for his body frame. The crazy thing is now except for the cancer his weight and BP would be acceptable to the insurance companies. Anyway I was glad he had the extra weight because it helped sustain him through a lot of days and even weeks of not being able to eat. He really burned it off to the point of being skin and bones! It was terrible.I can’t imagine what he would have looked like if he hadn’t had those extra pounds. Thats my excuse now. You never know when those extra pounds may come in handy! HA! MaryJuly 31, 2008 at 6:10 pm #21224chrissy23Participant
Chucks as well was overweight, but unlike you has lost all that weight. He went from being 220 to now being about 130lbs. Seems okay but God he doesn’t look that great. Now what I find interesting is that people are so concerned with a healthy appetite yet if it were not for the weight Chucks had to loose, I don’t think he would be here today. People get so worked up on “what they could have done to prevent this” and I say WHO CARES! They told us it was probably due to IBS or Cholitis that Chucks had since a kid.
Patti, what I find most interesting is I think a lot of patients with CC have the same “lazy ass” cancer. Chucks cancer as well when observed with a microscope had something (can’t remember what it was called) that caused his cancer to progress very very slowly. The oncologist was thankful for this when the recurrence came around. He had been sick since he was a child but doctors never found out what he had. They did a liver biopsy when he was 9 and found nothing. Now the Doctors think it could of have the cancer laying dorment for about 20 years. That was the craziest thing I had ever heard.
Either way…… I think food and weight is the way. I am not concerned about what Chucks eats as long as he eats. He body needs the energy, protein and fat to sustain while going through treatment.
Thanks for this post. Something to think about.
ChristinaJuly 31, 2008 at 5:21 pm #21223lainyParticipant
Teddy can join the overweight club. His whole life was about eating, thats what Sicilians do!! Lots of pasta! Now he has trimmed down although we don’t like the way it was done! He also is a Korean Vet and there are come thoughts about a fish in Asia that lets of a virus that could cause this. Not proven yet, just talked about. When he was diagnosed 3 years ago the doctor siad it is just a toss of the dice? So are you gamblers too??????? (sorry could not resist that one)July 31, 2008 at 5:12 pm #21222lisaParticipant
I was and am about 20 lbs overweight. I was a moderate drinker – about 1 drink a day in the evening, but in the couple of years I previously I had been drinking about 2 drinks a day (stress over divorce!).
Rode my bike a lot and was getting quite fit.
Like y’all, the doctors can’t say what brought this on.
No mets yet, no growth to tumor.
Gemzar/Xeloda cycles indefinitely. I’m feeling the cumulative effects of chemo in that I’m always in a fog of fatigue, and get violently ill on Chemo Tuesday.July 31, 2008 at 4:29 pm #21221pattibParticipant
How interesting! I’m so glad you posted, Irenea, as I’ve wondered too. I’m quite overweight, and was diagnosed 8/1/07 (tomorrow is my one yr anniversary!).
I’ve had several chemos and nothing shrank any of my tumors. At first they didn’t know what kind of cancer I had – multiple tumors in my liver – but upon re-evaluating my biopsy they determined it is intra-hepatic bile duct.
The interesting thing is that at my last appt. My oncologist described my cancer as “indolent” or as I call it, “lazy ass” cancer. It is not growing, or growing very slowly. It’s hard to say if any of the chemos are having that effect or if that’s just the way it is. Last winter we stopped all treatment for a total of 14 weeks and not much changed. Then in Feb one of the tumors grew a bit so they put me on the oral chemo Xeloda. I have been taking that ever since.
He says he’s seen this slow-growing form before, but it doesn’t happen often. No one will give me any kind of prognosis at this point.
Next week I will have another CT scan, and if it still shows no change, my doc says I may have the month of August “off”. We’ll see.
But I have felt strange that so few people at the cancer center are overweight. I feel quite the odd ball and have had no loss of appetite. Of course I don’t have any bile duct blockage either. The cancer was found by accident. Still, late stage, mets to my liver, and at first they gave me a prognosis of 3-11 months, so …. HA! I’m still here! Maybe that fat slows things down a bit, who knows?
PattiBJuly 31, 2008 at 1:15 pm #21220devoncatParticipant
From my perspective, I dont really care about what statistical risks for this cancer are. There are so few of us that it isnt really too valid. If being overweight, heavy drinkers, smokers…whatever, actually made statistical difference in the numbers, there would be alot more cc cases. Off the top of my head a can count about 15 overweight people I worked with, 3 heavy drinkers, and about 10 smokers in a work place of 60 people, yet I am the only one with cc. Lets just say if someone had a 1 in 120,000 chance of getting this cancer and an overweight person had a 1 in 100,000…yes you would have a greater chance, but not a serious increase. Unfortunately it boils down to bad luck. It would be nice if we could pinpoint something so it could be prevented, but somethings are just bad luck. The good thing is that you dont really have to go around thinking you caused yourself this cancer.July 31, 2008 at 12:49 pm #21219karenParticipant
Just some more input…my husband has always been and still is a “rail”. He tried most of his youth to put weight on (Boy I would love that problem!). In growing older he has a little tummy, but the rest of his body is lean.
KarenJuly 31, 2008 at 10:20 am #21218scragotsMember
Well, I guess I have to stand up and be counted…I, too, am overweight, have been since I high school. I can’t seem to lose it, specially now as I get older. But my doctor NEVER mentioned my weight as a factor in having this cancer. Of course, I already HAD the cancer, and I was going thru so much upheaval already, that maybe she didn’t see the significance in hammering me about it. I read that weight loss is a symptom with this cancer, but I never experienced this, even after surgery when I could barely keep any food down.
SueJuly 31, 2008 at 5:17 am #21217marionsModerator
Rarely has ever been a question silly enough not to evoke a response and certainly, neither is yours. Although, I would welcome a correct answer to the question of a certain body type being more susceptible of contracting and fighting this cancer I donJuly 31, 2008 at 3:59 am #1408ireneaMember
Hi Folks —
Quick question for y’all.
Was doing my usual obsessive research re: this awful disease, and found a journal article about a morbidly obese fellow whose CC was found incidentally after he developed post-op problems following gastric bypass surgery.
Interestingly, any treatment whatsoever was delayed because this poor man’s weight was so significant that normal avenues of staging and treatment were not availble to him until he lost enough weight to be able to be scanned by CT, etc. etc.
There is no mention of the his ongoing treatment or outcome, but I did find it interesting in that its the only case I’ve found in which someone was diagnosed and absolutely no treatment was offered, and yet the patient remained symptom free for a prolonged period (6 months at time article was written.)
So — the oddball question is: I wonder about the physical state of those of us who’ve been hit with CC. I am in fact quite overweight, and have lost about 10 pounds in the last few months without “trying” (whether its disease or stress I can’t say.) But I have certainly not had the weight loss (or loss of appetite) so common with this illness, and in fact have an embarassingly horrible high BMI.
BUt I am just curious if there is any data or anecdotal information about weight and ICC. It sounds as if an awful lot of folks here were very fit or nearly fit before being diagnosed, and I am curious as to whether weight seems to be any sort of factor and whether it seems to have an effect on outcomes and speed of progression.
If anybody feels like answering that would be interesting; if the whole question seems silly and moot, I understand that as well.
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