Re: Completely Oddball Question (from a Complete Oddball)

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! smile 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! sad

Re: Completely Oddball Question (from a Complete Oddball)

Irene,
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.

Re: Completely Oddball Question (from a Complete Oddball)

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.

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Completely Oddball Question (from a Complete Oddball)

Hi 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

Re: Completely Oddball Question (from a Complete Oddball)

Irene,

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.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.