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

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.

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!

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.

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

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