Intrahepatic CC stage lV newly diagnosed what do I do next?

Shlamoney,

My MIL has a 10 cm tumor and did gem/cis – the cis made her very sick. She was weak, vomiting, unable to eat more than a few bites at a time. They changed to gem/ox and she has tolerated that a little better.

We investigated radiational seed implanatation – SIRspheres. I recommend at least seeing if you are a candidate for that. My MIL sadly was not.

I wish you and your family the best of luck on this journey. You have a large support system, use them, and steer them to this discussion board. We are a very small family and found wonderful solace here.

HUGS,

Jen

shlamoney:

I think that the loss of appetite goes along with the chemo. My husband Tom had the same issue. He did drink lots and lots of Boost, 1 bottle of Boost has as much calories as a full meal. He did use the Boost Plus as it has even extra calories. This will help you maintain your weight.

Little meals or snacks (High Calories) is a good thing. The more calories you take in the better it will be. Tom, for a long time, could not stomach the taste or smell of eggs…but that eventually went away. He did suffer from chemo brain and called ‘Boost’ Bounce! Everytime he asked for a Bounce I had to think about what he was talking about! Drink whole milk (for the calories) and basically anything with high protein and high calories!

You need to rest as much as possible, but also get up and move. With Spring just around the corner, hopefully you can get outside.

Love and Hugs!
Margaret

Hi,
Thanks for your info.
did you consult an interventional radiologiost for the possibility of other treatment that radiology can offer before the chemotherapy start? It will not hurt to ask especially Standard University is famous for their research in the radiology oncology.
I am no doctor,but it seems to me the advancement on radiation oncology is faster and produce relatively less side effects and better quality of life if you qualified.
If I were you, I will get a 2nd consult on radiation oncology as soon as possible unless you had done so.
Please eat well starting now, no meat chicken is ok ,a lot of protein like nuts and beans, lots of green vegetable and fruits.drink AT LEAST 6-8 glasses of fluids/day and exercise 15 min.(eg. walking is the best) a day but not too munch .
Please tell me the regimen or the name of the chemotherapy if you know?
Cholangiocarcinoma is a long and winging road to travel,so to prepare and look forward is the key to survival.
God bless.

Dear Shlamoney,

My husband was diagnosed with Stage IV ICC in August ’08. He had a resection but two spots showed up on the part of the liver that was not removed in Dec. ’08. Not knowing what they were, the doctors decided to wait until his next scans. In March ’09 he presented with multiple tumors.
We were told that chemo and radiation were not options so he did not have any after surgery. We both wish he had. Chemo was started in April ’09 and he has been on three different chemo cocktails. We had good results with Folfox but had to discontinue that after 18 cycles due to an adverse reaction to the oxaliplatin. Then on to Gem/Cis until that affected his remaining kidney function. Last chemo was Xeloda. He had a chemoembolization four weeks ago and is scheduled for another one on April 17. My opinion is to try whatever is available to you. My husband is still able to enjoy life; he tires easily but knows his limits. We are raising a 14-yr. old girl and 9-yr. old boy who are very active in sports. My husband tries to make all of their games but sometimes isn’t feeling up to it. I believe the kids are what keeps him going because he enjoys seeing how they change from year to year and what all they accomplish. My husband was in good health prior to CC so I guess it would depend on your health, age, outlook, etc. as to which choice you make. By the way, welcome to our family, PeggyP

Hi Shlamoney,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what you are going through. But I’m glad that you’ve joined in with us all here as you will get a ton of support and help from all of us here.

Sorry that I can’t help you with any personal experiences of chemo as my dad never had that, but I know that you will get a load of help from the members here. My dad had the option of chemo but he wanted to go with what he felt would give him the best quality of life fro the time that he had left after he had his diagnosis. His CC wes deemed inoperable from diagnosis and he chose to have PDT as his treatment instead of the chemo.

I know that this is a tough call for you to make and I wish you every success with what you choose to do. There is a ton of info posted here on the site about all types of chemo etc by the members and I am sure that reading many of the posts will help you here. And please know that we are all here for you as well and stay in touch with us please. We care.

Best wishes,

Gavin

Dear Shlamoney, welcome to our extraordinary family but sorry you had to join.
First I would say that Stanford is a great place, not heard of the other. To chemo or not seems to be the biggest question on our Board. If you are younger the chemo may do better and the side effects may be less. We have had Stage IV on here where chemo worked very well and they were able to have surgery, our favorite word, you know. My husband was 5 years past a Whipple procedure and we were told they could do no more and offered Palliative chemo. He asked the ONC how much more time it could buy him and the ONC said maybe a month or 2. Teddy opted for quality over quantity. Again it’s a very personal decision. I know some more family will come along and give you some advise. Best of luck on your decision and your chemo should you do it! Please keep us posted.