dad newly diagnosed/choosing treatments
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I have heard soranafib is really good, used in europe more often then the USA. good luck, my thoughts and prayers are with you.
hugs,
roniKathy….I second Jim’s suggestion and would request copies of all including, scans, blood test, physicians reports, etc. This is something all patients are entitled to. Your Dad would need to request it or give you permission to do so on his behalf. You would want to make contact with at least one (if not more) physician treating this cancer. With a rare cancer such as cholangiocarcinoma you can never gather enough opinions because, the obtained knowledge allows us to make informed decisions.
All my best wishes,
MarionKathy, I would be inclined to get at least one more opinion from one of the major cancer centers. This cancer is fairly rare, so most smaller cancer hospitals/doctors have limited experience with treating it. I had my surgery in a hospital that has a large liver transplant program and a large digestive diseases surgical group. With fewer than 2000 cases diagnosed annually in the US not many facilities has deep experience with CC. My surgeon, Dr. Tomoaki Kato, has done many surgeries on ‘inoperable’ patients. I’m sure there are other superb surgeon as well in the US.
I wish you the very best in your quest. God bless you for helping in you Dad’s treatment.
Thank you all for the responses.He is being treated at the Ireland cancer Center in Cleveland, Ohio. The take I had on the surgery was that it is in a risky area at the left upper quadrant. I really appreciate the support and responses from everyone.This is such a rare form of cancer and we are all coming to terms with it.Dad was never sick and the family has been cancer free.This is quite a blow for us all as I am sure many of you know.
Kathy, where is your Dad being treated? Why is surgery too risky? My understanding is that surgery offers the best chance for long term results against this pernicious disease.
I was a high risk patient from a surgery standpoint (age + cardiac condition), but surgery was successfully done anyway. As others have pointed out, gem/cis is a common CC chemo protocol. I had Gemzar only for 6 months following surgery.
Best of luck with your Dad’s treatment.
Hi Kathy – As Lainy said, Gemzar/cisplatin is a very popular chemo treatment for CC patients. My husband had 3 rounds of Gemzar/Cisplatin. Some people respond very well and their tumors shrink. Others don’t get such a good result, but seems like it would be worth a try. If you go to the National Institute of Health website, you will be able to find out more information about the clinical trials that are available. Blessings, Susan
Hello Kathy and welcome to our wonderful family but sorry you had to join us.
At the top of the page is a search engine and if you type in say, Folfox, posts will appear with perhaps some answers to your questions. I can’t help on this one except to tell you that you have come to the right place where the most caring people in the world reside. Where is his CC located and where is he being treated? Gem/Cis seems to be the popular cocktail around here. I just know some members will chime in shortly. Please keep us posted on your Dad.We just got back from the oncologist.My dad was diagnosed with CC and they cannot do surgery at this time.Too risky.They want to do rounds of chemotherapy with Gemcitabine and Cisplatin.They also asked if we wanted to participate in a trial instead.It is A Phase 2 study of AZD2171 (Cediranib) with modified FOLFOX6.The side effects of the FOLFOX6 are scary even though the % is low. I am wondering though if this would give him a better shot. anyone have any thoughts or knowledge of this?
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