nativegf
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Hello,
It’s been awhile since I’ve posted here. Diagnosed with CC back in June 2016, my journey of treatments so far: Oxcaliplatin/Gemcidibine (caused liver toxicity), Irinatecan/5FU (put me in heart failure) and now Docetaxal (1st treatment I became Neutropenic/2nd treatment 30% dose reduction and Neulasta shot I tolerated much better). I’m having my stents replaced at Mass General for the 3rd time next week prior to a 3rd Docetaxal treatment and then some scans to see if the disease has responded to treatment. In the meantime, tissue samples from my tumor are going through sophisticated genetic testing at Sloan-Kettering to see if there is an immunotherapy drug that might help me. I’m told test results take 6-8 weeks so I don’t expect to hear anything until mid or late February.
The question I have right now: has anyone experienced severe bloating/gas after nearly every meal? It started for me after 2nd treatment of Docetaxal. I’m not sure if it’s a side effect of the chemo or the disease itself causing these symptoms. I still get hungry and food tastes good, but I get these bloating/gas symptoms that last for hours.
I look forward to your responses!NativeGF
It’s nice to hear news of targeted therapies that are working for cholangiocarcinoma patients. I’m hoping to be eligible for a similar treatment. My first chemo combo of oxaliplatin and gemcitabine didn’t go well as my liver counts went up. The next combo that included an at-home 46 hour pump of 5-FU put me in heart failure. I was fortunate to be in the ICU when I went into ventricular tachycardia. Four nurses revived me before they had to use the paddles. I’m recovering well from that episode but I have to wear a portable defibrillator vest until my heart function improves. Apparently, this cardiac side effect of 5-FU is pretty rare. If I’m able to get rid of the vest in the next 3 weeks, I’ll be headed to Sloan-Kettering in NYC to look for any treatment that I can tolerate and will help fight my Klatskin tumor. In the meantime, I’m scheduled this week for a second replacement of my stents.
I wish everyone all the best in their individual struggle against this awful disease.Hello,
It’s been awhile since I’ve posted here. This news on Keytruda comes at an interesting time for me. I was going to ask how people have done on a chemo regiment of irinotecan, leucovorin and 5-FU. I had first treatment yesterday with at home pump for 5-FU 46 hour drip. I was on regiment of Oxaliplatin and Gemcitobine but that combo was messing with my liver enzymes. My disease right now has metasisized only within my abdominal wall. While meeting with my oncologist, he said he going to apply to Merck to get Keytruda after trying this new chemo combination. Sorry to hear about your Mom, Steven, but thanks for sharing the news on Keytruda.
NativeGF
It is nice to hear from others that are facing a similar challenge. I appreciate the responses. As far as how I’m feeling, I have found my reaction to each of the 3 treatments to have a few similarities but many differences. One thing I did learn: Emend is a wonderful anti-nausea medication. I had nausea for a few days after treatments 1 & 2 (actually vomited only once) but with the Emend prior to treatment 3, I never had any nausea symptoms. Highly recommend.
My appetite has remained strong and I finally stopped losing weight. I’ve put on a couple of lbs in the past week!Julie,
I appreciate the response at that hour of the night! Actually, when I hit the button on my computer to enter the post, it looked like it didn’t go through. I was getting up this morning to try again when I saw that it did indeed post on the website and I had a reply.
I’m so sorry to hear about the recurrance of your disease. Are more surgeries possible? Liver transplant?
Stay strong and keep fighting!!Dave
