Intro & Hello!
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Dear Nikki,
Welcome! I hope the clinical trial works out for your Dad. It sounds like he is one of the fortunate ones on how he tolerated the GemCiis. However, chemo is harsh and I know our ONC always focused on making sure she was doing more good than harm.
Please keep in touch and let us know how your family is doing.
Best wishes,
CatherineDear Nicole, welcome to our remarkable family and the best place to be for CC support. First and foremost your Dad needs to be with an experienced “team” in CC. Hopefully we will find out from some of our members if there is a better place for him to be that is not too far for him to travel. At the very least his Doctor should be an Oncologist. Too many Doctors still do not know about CC.
You are right that we do like the word stable which could mean that his Chemo protocol needs to be tweaked. He really could use another opinion. If you live in the same city as your parents I would suggest that you go with them to the Doctor visits. The more ears present the more you will know, especially since Dad is confused and Mom is probably scared straight. Below is a site you may find helpful and I am wishing you the best.http://cholangiocarcinoma.org/newly-dx/
Hi Everyone! I’ve been reading the forums for a couple of months and only now am ready to join in the conversation. You seem to be a really great and supportive community.
My father, 73, was diagnosed with CC in April. He originally thought he had a pulled muscle, perhaps inflammation of the ribcage, one doctor’s appointment led to another. Through an ultrasound, MRI, CT scan and biopsy, they confirmed the bad news. He has one large mass on his liver, another close to his stomach and many small tumors scattered throughout his lungs. Nothing on bones or brain..
He has gone though 6 cycles of GemCis, and the tumors didn’t shrink, and his oncologist says he needs to take a break due to the toxicity. This confuses me bc kidney & liver function are fine. Also confused because onc seemed to think steady tumors was bad news, but we were happy they didn’t grow. Dad seems to have a better quality of life ON the chemo than OFF. So, I don’t really understand if there is a option to do another GemCis course again in the future.
Yes, this is a general oncologist, not a specialist in CC. My mom is going to appointments with him, not me. He honestly doesn’t seem up to traveling to special facilities around the country. We haven’t had any genetic (genomic?) testing done.
Dad has an appointment at Wake Forest Baptist Hospital on Thursday for a clinical trial. I’m really hoping that works out because it sounds like a very interesting and targeted new drug. I’ll post in Clinical Trials area about that and some other topics where I have questions.
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