Topic: Recent CCC diagnosis

Hi - My name is Jadine and I am from Boulder, CO.  I was diagnosed with cholangiocarcinoma last month after three months of vigorous testing.  It is a result of a choledochal cyst diagnosed when I was ten years old. (It took 49 years to turn cancerous)   I am 59 now.  It is not resectable and I was denied a spot in the liver transplant program because of the size of the tumors and because it is stage IV.  I have been to the Mayo Clinic for a 2nd opinion which resulted in the same diagnosis plus a suggestion of doing chemoembolization. 
          I am going to do a Phase I clinical trial with Gemzar, Xeloda and Axitinib and hope for the best.  Does anyone have advice on nutrition and a remedy for the itching symptoms???  Thanks - Jadine

Re: Recent CCC diagnosis

I bathed in copious amounts of baking soda for the itching. For the nutrition information, you might want to search the alternative section.

Sorry you had to join our club, but this is a good place to be with loads of support and information. Best of luck on your trial and keep us posted.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Recent CCC diagnosis

Thanks Kris - it does seem to be a wonderful source for information as well as support and hope. 

Jadine

Re: Recent CCC diagnosis

Jadine,
I echo Kris in welcoming you.
You might (if you have not already done so) enter "Nutrition" on top in Search.  You will be able to read several posts about nutrition.  Also, Peter is following a strict diet, I believe. 
Wishing the best of luck with the clinical trial and please, stay in touch.
Marions

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: Recent CCC diagnosis

Kris,
How does the red hair do with the tub full of baking soda??
Seriously,  I've got the itching thing back again although I am not jaundiced at all.  I've never tried bathing in baking soda but I will.  Did it relieve the itching for you?  Did the relief last after you were out of the bath?
Thanks,  I hope the insurance issues are being resolved for you.  Are you back in Sweden yet?

Jadine,  I too am  so sorry you've needed to join us here but this both a good resource and wonderful community.  Marion is correct in advising that your search on nutrition.  I believe it's important that you find what is right for your body and condition and be constantly willing to adjust to changes.
The chemo cocktail you are considering has been used with some success by others I believe.  Managing side effects well is key.  Dr's  don't always prepare you ahead of time with what might help.  Jeff has this down better then anyone.
-Peter

Re: Recent CCC diagnosis

Thanks all for your input.  The Phase I clinical trial I was going to do was closed down because a patient reached the toxicidity level.  After much discussion with an oncologist at the research facility about experimental trials my oncologist suggested standard of care with Gemzar and Xeloda.  With much relief after being so overwhelmed I will start that chemo this week.  I am first attending a class sponsored by Kaiser on what to expect with chemo so that should be helpful.

Has anyone used Essiac herbal drops ???

-Jadine

Re: Recent CCC diagnosis

Jadine, I'm on Gemzar and Xeloda.  Every one is different, but I'm not experiencing any side effects aside from fatigue and low appetite.  I hope that the chemo regimen treats you as well.  Radiation was for me the worst part - the fatigue was almost overwhelming. 

My tumor has shrunk after three months - hopefully yours will as well.

Re: Recent CCC diagnosis

Lisa - Thank you for the positive information - what wonderful news for you.  I just heard from my doctor - I am back on the  list for the Phase I trial - Gemzar, Xeloda and Axitinib - should start next week.  I am pleased that it still includes Gemzar and Xeloda.