lindar
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I’m very happy to hear that you are doing so well. My husband also has recurrent intrahepatic CC. He has just started chemo and is doing pretty well so far but it is always encouraging to hear about a new type of treatment. Please keep us posted.
Thank you all for your comments. Lisa, you are absolutely right. We do plan to treat it like a chronic illness and do whatever is necessary to maintain his health for as long as we can. Fortunately he is tolerating chemo pretty well and is still working, exercising, and enjoying life. My husband is the most upbeat, optimistic person I have ever known and I think his attitude is helping him stay strong.
We saw the oncologist today and the information was provided was consistent with the above post from PLC1029. The doctor said to use a good topical cream and take Benadryl or a painkiller as needed. A few other tips: take showers in lukewarm water (my husband learned the hard way that hot water makes it worse), use plain soap, and don’t rub the rash when bathing. He didn’t think steroids were necessary at this point. The rash has spread and looks awful but it seems to be less annoying than it was yesterday.
Thanks Marion. Most of these messages pertain to anti-EGFR drugs like Erbitux where rash is common but he isn’t on anything like that. I think it’s less common with Folfirinox but it is listed as a possible side effect. He’s been lucky with side effects so far and this isn’t the worst thing that could happen. I just feel bad because he’s so uncomfortable. If it isn’t better by tomorrow, I think we’ll let the doctor take a look at it. I’m grateful that he has a doctor who is willing to fit him into a busy schedule when necessary.
Hi Darla. Six months seems a long time to wait to see if your current chemo regimen is working. My husband’s oncologist is ordering a scan every eight weeks so we can move quickly if the current regimen fails. My husband has intrahepatic CC and his bilirubin level has always been normal.
When my husband started chemo, I asked his oncologist whether there was any problem with his having a cup or two of coffee in the morning and he said it would be fine. Of course, the type of chemo may be relevant. I would discuss it further the next time you see the doctor but perhaps your wife could find some decaffinated tea that she enjoys in the meantime.
Hi Leah. I’m a new member too. My husband had a resection a year ago today but his CC has recurred as it so often does. He just started FOLFIRINOX which is made up of the three drugs you mentioned plus Oxaliplatin. Leucovorin is just a type of folic acid that makes the other drugs more effective and it has few side effects. The doctor said the other drugs all have side effects and that some people have particular trouble tolerating the Irinotecan (Camptostar). However, the regimen has been shown to be more effective than the alternatives in pancreatic cancer patients so there is hope it may also be more effective in treating cholangiocarcinoma. We were expecting some major side effects but, other than a little nausea the first day, my husband has not had any side effects so far. All my best to your dad.
Thank you for sharing this article. I believe personalized medicine is very promising, particularly when dealing with a disease as diverse as cholangiocarcinoma. Samples from my husband’s tumor are currently being tested by Foundation Medicine in Cambridge MA in the hope that they can identify some additional treatment approaches.
Thanks so much for your comment LeeAnn. It was very helpful to hear about a CC patient who did will on FOLFIRINOX. My husband has never had any symptoms from the CC and has no other health problems so the doctor thought he would be able to handle it for at least a while. He was supposed to be in that clinical trial at U of C also but was ineligible because he had radiation after his resection. Other than a little nausea the first evening, there have been no side effects from the chemo so far. We know they will show up eventually but at least he is off to a good start. Perhaps we are in denial but we really do believe better treatments are on the way and we are committed to doing whatever is necessary to make sure he is still here to benefit from them.
Thank you for your warm welcome. My husband’s chemo started today and went well. After further discussion with the oncologist, however, we are trying FOLFIRINOX rather than FOLFOX. The side effects can be more severe but we are hoping for a more durable response. Treatment may change after we receive the testing results and recommendations from Foundation Medicine but we are comfortable with this course of action for the present.
