bile duct cancer /bilary cancer

I have been recently diagnosed with Stage 4 Liver Cancer that originated in the bile ducts and mass has attached to liver and effected two lymph nodes. About to begin my fifth treatment of chemo. After the sixth, a CTscan will determine success of the chemo treatment. Oncologist has already indicated a possible lif expectancy of one year. Looking for survivors, stories, and what helped you. God Bless. 

Stormy411 said:

Bile duct cancer spreader to liver and lymph nodes

I have been recently diagnosed with Stage 4 Liver Cancer that originated in the bile ducts and mass has attached to liver and effected two lymph nodes. About to begin my fifth treatment of chemo. After the sixth, a CTscan will determine success of the chemo treatment. Oncologist has already indicated a possible lif expectancy of one year. Looking for survivors, stories, and what helped you. God Bless. 

Hi Stormy411

I was diagnosed with bile duct cancer stage4 on 5/16. Large mass on liver, lesion on lung and other seeding. they gave me 8-12 months(now over 2 years since diagnosis). started on cisplatin/gemzar. On 10/17 I became allergic to cisplatin and they changed me to xeloda pills. The mass on liver is gone and they say my cancer is stable. My liver reacted very badly to my last  2 gemzar infusions(tender, fever and discomfort) so just this month they have discountinued genzar. Stil on xeloda. I don't work anymore but stay busy with my kids. throughout I have been able to stay fully functional although need long deep nap in the middle of the day.

This diagnosis was devastating but I got used it pretty quickly. I try to spend as much time with my kids as possible. Every day is special. After the diagnosis I got my matters in place. Now I don't let my mind think of the future. It helps me to stay positive and not dwell on what could happen. 

Hang in there and make the best of every day. 

I would talk to his Dr right away about this leg redness, bile duct cancer is well known to throw blood clots and most are on blood thinners my husband included. Reason behind this is most often the tumor is pressing on the portal vein.

Chemo for this type of cancer never works it may buy you some time but be looking for Plan B. Problem is before you can get on a clinical trial you have to fail a first line of treatment and chemo is the first line of treatment only thing is that chemo can do a lot of harm more than it does good.

I can't stress this enough get the tumor biospy sent to Foundation One Lab to see what mutations there are so you can start the clinical trials when chemo has failed. Make sure they test for PDL-1 for Keytruda which is a immunotherapy if your lucky enough to have the protein PDL-1 or high tumor burden that is the way to go and it's FDA approved for solid tumors if you have this. There are some people who have bile duct cancer pull in these mutations and Keytruda has made them NED (no evidence of disease) even if Keytruda isn't for you they have clincal trials just for your mutation with are called Targeted drugs and alot have been on these trials and it's given them years jumping from trial to trial after one quits working. My husband did 2 clinical trials and was given a year and a half of life when the dr's first said 3 months so they do work but sometimes at a cost there are a lot of side effects, after all bile duct cancer is very rare so the trials most of the time may be first in human but, don't let that scare you it's just because it's a rare cancer that the trials for this will either be first in human or phase 1/2 or 1.

If you do get on a trial and have side effects try your hardest to control these side effects without doing a dose reduction, because usually after they reduces the drug the tumors start to grow. Most side effects are joint pain which is usually the cause of to high of phosphate which can be managed with a phosphate drug if 1 dose doesn't work ask your dr to raise the phos drug that usually takes away the joint pain. That is what happened to my husband they lowered the dose because of joint pain and the tumors grew fast. Another is skin issues, what happens is the drug comes through the capillaries and burns the skin off usually on hands and feet it's called Hand and Foot syndrone. We used a cream called Silvadene cream it's used on burn vitims and it works wonders. Also losing finger and toe nails it's like they lift up and off. Most of this happens if your tumor pulls in the FGFR2 mutation and your on a trial for that mutation. The FGFR2 mutation is common in bile duct cancer and it was 1 of the mutations my husband had.

You have to keep up with eating good you'll find out on chemo and any trials that food will start to taste bad. The food you loved might now taste horrible but you then have to figure out if you now like food that is room temp, hot or cold. There are a lot of protein drinks out there so find one you like because there may be days when you don't want to eat but you have to. Cancer Cachexia is very common it's bascially anorexia that cancer patients get to when the cancer feeds on the body and muscles no matter how hard you try to eat you just can't gain weight. My husband had this and he went from a very muscular man to just skin and bones with no muscle mass left at all.

This is just a start of it, hope some of this helps if you have anymore questions don't be afraid to ask, I'll try to answer them i don't know everything about this cancer but I do know you have to do all the investgating yourself to find the trials, better ways to eat, how to manage side effects and the dr's who don't see this type of cancer much really don't know how to help you. make sure you are at a major cancer center for treatments with this being so rare your smaller hospitals just don't have the resources to help you.

I wish you the best of luck not to sound all doom and gloom but this cancer is a beast and a hard one to fight and win.