Introduction
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After four cycles both oncs will want a CT scan, so you will get a definitive answer to how the new chemo is working.
Duke
Sherri……try not to be discouraged. For all we know you may respond well to the current treatment, but you will have to give it a chance. With 4 completed cycles the physicians have a pretty good idea as to the success of the treatment.
Hang in there an lean on us.
Hugs,
MarionI just wanted everyone to know that I have learned another lesson in this journey. Unfortunately I was waiting for MD Anderson to see me for an evaluation and in the mean time my new onc wanted to start a palliative treatment until I could go. MDA called today to say I could come next week, then when they asked about current treatment I was told I couldn’t come until 4 cycles of this new treatment were complete. My onc is going to try and talk to the doctor at Anderson but it doesn’t seem like there is anything that will change.
I hate this Cancer, there are no directions to help you make correct decisions! All you do is stay on a roller coaster. Thought I had a good game plan just to have the roaster take off again. I think I’m just going back to work and try to stay sane. Hope this oxaliplatin/xeloda works for a while.
I wish all of you the best and thinks for the support
SherriHi Sherri,
I am glad to hear that you have started the treatment. I pray this regimen will work for you!
Lee
Duke,
Thanks for the suggestion on pre-de for the foundaion meds. My doctors office did handle it for me.Sherri
Hi Lee,
Thanks for sharing your husbands experience with me. I had my first chemo yesterday and I’m experiencing the cold sensation and tingling in my fingers. I will take six months of stability to hopefully caring me into being able to get into a clinical trail or anything they want to try.Finding this site has been the best thing I did. I believed my first onc and when the gem/cis didn’t work I was left on my own. This group led me to things that needed to be done and that I needed to take charge. Hoping to hear tomorrow on date I go to MD Anderson.
I hope one day to be able to help others like I was helped from this group.
Happy Easter to all
SherriHi Sherri,
So sorry to learn about your disease, but it sounds like you have a good plan moving forward. My husband was on oxaliplatin and capecitabine after his disease came back. This regimen kept his disease stable for about 6 months. The side effects he had experienced were cold sensation, eventually neuropathy and hand/foot syndrome, but generally it was tolerated. Good luck with the treatment!!
Lee
Sherri –
Make sure your onc got a pre-determination of approval for Foundation Medicine. I thought mine did, but it turned out she did not. FM is good at fighting insurance companies, but the best thing is to avoid the fight in the first place.
Duke
Dear Lee, welcome to our wonderful family and so sorry to hear what your husband has been through. My goodness, he has really had quite a journey. Through all of this have you ever sought out other opinions? Different eyes see different things. I can’t help with the Chemo as my husband never had that but I know we have a lot of members who will reply to you on the subject of treatments. I can read that you are not new to this, however we do have some sights that you may find helpful:
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foundation-resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-emergency-information-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/Please keep us updated on your husband’s progress as we truly care.
Dear Sherri, sounds like a plan! The important thing is to keep having a plan on the back burner. Duke has been great for that and as along as there is a plan there is lots of hope. Good luck on the new chemo. P.S. Let us know about MDA!
Hi to everybody,
I went to see Dr. Raddin today and he is going to try a different chemo on me to see if this one will help since gem/cisp did nothing. I will have IV chemo of oxaliplatin once evey cycle and will be taking two capacitance pills everyday. I will have one week off. Has anyone had this treatment?He will also request by biopsy and send it to foundation one. I am still going to Anderson but they said it could be two more weeks before I get to go. I have been without any treatment for three weeks and the way my ca19 numbers are rising I didnt want to wait on treatment anymore.
I will keep everyone updated.
SherriBrilliant news Sherri!! I so hope that you get some good news at MD! Please let us know what they say about everything. Sounds like you have your boxing gloves on again and talking the fighting talk as well, good!!!
My best wishes to you,
Gavin
Excellent news! I’m sure that’s a huge weight off your shoulders. Now….go get “em and onward to more good news!
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