Topic: Completely Oddball Question (from a Complete Oddball)

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.

Strength, everyone.

Irene

2 (edited by marions Thu, 31 Jul 2008 11:30:25)

Re: Completely Oddball Question (from a Complete Oddball)

Irene,
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 don

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Completely Oddball Question (from a Complete Oddball)

Hi Irene,

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.

Sue

Today is a new day. Congratulations, you are already a survivor!

4 (edited by Karen Thu, 31 Jul 2008 06:50:50)

Re: Completely Oddball Question (from a Complete Oddball)

Hi Irene,
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.
Karen

Wishing all God's blessings!

Re: Completely Oddball Question (from a Complete Oddball)

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.

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Completely Oddball Question (from a Complete Oddball)

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? :-)
PattiB

Re: Completely Oddball Question (from a Complete Oddball)

Hi y'all,
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!).

Never smoked.

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.

Re: Completely Oddball Question (from a Complete Oddball)

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)

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Completely Oddball Question (from a Complete Oddball)

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.

Christina

Re: Completely Oddball Question (from a Complete Oddball)

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!  Mary

Re: Completely Oddball Question (from a Complete Oddball)

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...

Peace, hope, and healing to all!

Re: Completely Oddball Question (from a Complete Oddball)

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.

Dawn

Re: Completely Oddball Question (from a Complete Oddball)

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.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Completely Oddball Question (from a Complete Oddball)

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..... hmm

Re: Completely Oddball Question (from a Complete Oddball)

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.

Re: Completely Oddball Question (from a Complete Oddball)

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:

www.obesity.org/casestudies/casestudyapril.pdf

Again -- strength, all.
Irene

Re: Completely Oddball Question (from a Complete Oddball)

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!!!

Re: Completely Oddball Question (from a Complete Oddball)

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,
Sophie

19 (edited by JeffG Fri, 01 Aug 2008 21:02:21)

Re: Completely Oddball Question (from a Complete Oddball)

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!
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Completely Oddball Question (from a Complete Oddball)

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 --
Irene

21 (edited by JeffG Sat, 02 Aug 2008 08:52:46)

Re: Completely Oddball Question (from a Complete Oddball)

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.

Take it to the Limit,One More Time! (Eagles)

Re: Completely Oddball Question (from a Complete Oddball)

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.

Carol

Re: Completely Oddball Question (from a Complete Oddball)

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.

Strength!
Irene

24 (edited by JeffG Sat, 02 Aug 2008 12:21:19)

Re: Completely Oddball Question (from a Complete Oddball)

Hi Carol,

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.

Take it to the Limit,One More Time! (Eagles)

Re: Completely Oddball Question (from a Complete Oddball)

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 gone smile