Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???
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Andy, I live in Leeds. The new oncology unit there is amazing. You can be sure your mum is in good hands. Ray’s oncologist was Dr Crellin, in our case he concentrated on keeping Ray as well as he could for as long as he could and that worked for us. Ray also tried Gemcitabine and the only side effect he had was tiredness on the second day, in the last months it stopped the cancer from growing and gave us extra time, although he had to miss a few treatments due to low platelets. Fingers crossed for you.
Jan, the doctors might not seem in a hurry but I am sure they are waiting to see how Charlie gets on. If he is well and plays golf every day they may not want to compromise his current good health. It is a difficult decision for anyone to take, and everyone feels differently, but you should continue to sound out everyone here when you are confused about what to do, there is a wealth of knowledge and support you and you can be sure everyone is going through or has gone through what you are currently enduring.
Love Sue
Hi Donna,
I sent you an email regarding my mom’s experience with the nexavar which so far as been positive with no side effects. She is on week three of the Nexavar.
In regards to itching try to stay away from any products with perfumes or artificial dyes.
Aveeno baths are a good one to use.
When I first went to see my oncologist at MD Anderson, I asked him about Nexavar (sorafenib). He said that some patients have good response with it if they have regular HCC, but he says he has not had good luck with it on his cholangio patients. His preferred regimen for CC is daily tarceva with periodic infusions of gemcitabine and cisplatin. I do not personally know of anyone taking sorafenib for CC.
Violarob in Texas
My husband tried everything and nothing worked until we found Sarma at Walgreen’s. Also ice packs help.
Thank you cherbourg for your response. I had read the info at that site, am hoping someone here has used nexavar for treatment. All the posts I have read I don’t see it mentioned. It has been approved for liver cancer as of last year…..I guess I was looking for someone who had been treated with it and wanted some positive input. Thank you
Does anyone have suggestions for itching?? I have tried several lotions, creams, hydracortisone, benadryl ……..any other ideas out there??
Donna try this link. The drug has been around for a while and was orignally used to treat kidney cancer. It was approved in June by the FDA to be used for advanced hepatocellular carcinoma. While not officially approved for Cholangiocarcinoma, our oncologist is using it and I think he said there had been a small drug study for it’s use in cholangiocarcioma. The problem is that some insurance companies may not pay for the drug since it’s not specifically approved for Cholangiocarcinoma. My mom is going to probably add this to her arsenal. We see the oncologist on Monday.
Hope this is helpful……….
Cherbourg
Donna…at times, it helps to re-post your question as it can be lost due to others writing in. Sorafenib is not a new drug therefore, I would assume for someone else possibly having some input on this. Anybody?
Has anyone been treated for cholangiocarcinoma using a drug called Nexavar? (sorafenib) I had a liver resection 2 1/2 years ago….and this June a mass was found on abdominal wall and nodule on the liver. Mayo oncologists recommended this drug…..but in reading I am not seeing anyone mention it?? Any info would be appreciated…thank you
Andyuk
Glad to hear your mother has few side effects from Gemzar. I finished 4 cycles (8 times) of Gemzar in July 08. Be sure and tell your mother to drink lots of water the day of infusion- that flushes the chemo thru your kidneys and will help prevent any problems with the kidneys. I am now on Xeloda – one week on and one week off. Each of us are so different – so do a lot of reading on this site, it really helps you understand all the procedures.
available.Nancy
Thanks for everyones help. The good news is that we have been in contact with prof lodge at leeds in the uk. We sent all the scans and reports to him and he hasn’t ruled out surgery saying he thinks he can do something.
My mothers health is very well at the moment and she hasn’t had any real side effects from Gemzar which is good. Prof lodge wants to wait for the 3 months of chemo to finish then we will have another scan done.
We hope and wait.
marions…thank you i have learned so much by reading everyones comments for all to share a common ground in that cc lives in their worlds there are as many different stories of coping and living in spite of the difficult treatments and outcomes thanks to all for putting your lives and thoughts out there i fully understand that only one knows the future and he holds all of us in the palm of his hand jan
Jan…..I am not a physician and can only pass on what I have experienced personally with my husband and that what I have read and learned along the way mainly, through this site and some of the conferences attended by me. When reading through the postings by other member you will notice that all of us experience what you are experiencing and confusion certainly, is part of it. I don’t believe for anyone predicting the outcome as of yet as your husband is being treated, presently. I assume for upcoming scans to be showing a clearer picture, soon. Please, don’t give up hope and please, continue to lean on this unique family of CC where everyone is always ready to share with you and support you, all the way. Sending tons of good wishes your way.
MarionDid he have a Whipple. Again it depends on what size and where the cancer is but perhaps he is a candidate for cyberknife?
marions we are in memphis chemo will be gemzar and 5fu rad to surgical bed area external beam 19 treatments charlie is 65yrs old dr.s do not seem to be in a hurry do i assume this to be due to predicted outcome… im confused jan
Sounds like my husband who had a Whipple August of 05. Cancer returned this last April where the duodenum used to be. He just had 5 weeks of radiation daily in hope of getting cyberknife in October. Where are you and where did his cancer return? Teddy is going to be 76, post Whipple great after kinks ironed out. Golfed and still working part time.
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