sweetgreen
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Hi Maria,
My husband also has advanced, unresectable CC, and is a marathon runner. He ran his first marathon just before he started having symptoms this past October. He would love to run another one, but worries about if he can or if he’s over doing it. Your post today was really inspiring to us. He is currently on chemo, but had a CT scan and the doctor said it looks like everything is the same as when he was diagnosed — stable. So, he may get to take a break from chemo for a while and will have the energy to train again. For folks like us, I’m starting to wonder if CC can simply become a chronic disease for us, so that we can go back to living our normal lives. Your accomplishments since diagnosis seem to say that it can be. Thanks for being such an inspiration, Maria. Best of luck to you!
Thank you so much for relieving my fears! We have a family trip coming up and we would hate to jeopardize that. Love the zofran tip. They also told him he needs a platelet transfusion befote stent procedure. Any experience with that?
Hi Jessica and Sandtdad, we are looking at making appts in Boston soon for a 2nd opinion on my husband. We have gotten the names of david ryan …gi oncologist at mass general…and abrams at dana farber. What names do you have or recommend?
This is such an interesting study. We did tallk to our onc about the fasting. It has been in the news a lot, but she hadnt heard of it. We gave her copies of the studies at mayo and usc, as well as the novartis study with mice. She said we are welcome to try it. We will have to be sure to hydrate. I wish that participating in a fasting clinical trial didnt require traveling across the country. We are going to trynit on our own. Has anyone here tried the hyperthermia and had success?
I just posted in the whats working section, and i am happy to report that the first round of chemo appears to be working! My husband has been up and about acting completelynnormal. Well, sleeps later than when he was working but is fine the rest of the day. No pain, eating normal, doing yard work. We are enjoying this fantastic time. What a turnaround.
I found a study at USC-Norris Comprehensive Cancer Center that is still enrolling patients. I’m not sure if cholangiocarcinoma would qualify. Here it is: Short-Term Fasting: Impact on Toxicity, http://clinicaltrials.gov/ct2/show/NCT00936364?term=fasting+chemo&rank=4 We are going to ask our doctor about this for my husband. He hardly eats anything anyway.
Liz and Peony, it sounds like we are on similar journeys. We also have young children, and life just isn’t normal anymore–although my husband does put on a GREAT act on days when he’s feeling perky and at dinner time with the kids. I wish he had gone to the doctor the moment he had started feeling pain, rather than waiting a month. Maybe we could have caught it in time such that surgery would have been an option.
Thank you everyone for all your support and encouragement.
BridgetHi Marion, the nausea only came after the cisplatin. After the gemzar, he wasn’t nauseous at all. I will look into a radiation oncologist. That hasn’t been recommended to us at all. –Bridget
marions wrote:Sweetgreen…I doubt for surgery to be advised. The nausea, does it increase after chemo treatments or, is it steady throughout? I would also make an appointment with a radiation oncologist. Hopefully it would be someone more than familiar with this disease.
And, make sure that the experts communicate with each other.
Hugs,
MarionThank you all for your kind remarks and support. It’s such a gift to have a resource like this! I guess I forgot to mention that during his lap. surgery to stage him, they discovered mets in his abdomen. The pathology reports said it was in his lymph nodes, too, I think. His liver and pancreas are all fine, and his tumor is in his distal bile duct (the lower end).
