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Hi Everyone,
The tumor is back after my resection(11/11).
THey said folfirinox would be my best choice. It's phase 1 clinical trial at University of Chicago. Since I never had chemo or radiation I'm so worry about the side effects and I'm not sure if my insurance is going to cover, since it's only FDA approved for pancreatic cancer. I'm waiting to hear from them.
Anyone else tried this Folfirinox?
LeeAnn....I found this posting with positive response to the chemo mentioned:
http://www.cholangiocarcinoma.org/punbb … hp?id=7735
Additionally this, from the NCI:
http://www.cancer.gov/cancertopics/druginfo/FOLFIRINOX
You must also know that in a Phase I trial, researchers test an experimental drug or treatment in a small group of people (20-80) for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
Having said that, participating in a Phase I clinical trial may allow for the chance to benefit from a drug not yet available to the general public; in this case, for CC patients.
Hopefully others will chime and share their personal experience with FOLRORINOX. And, those of you not enjoying the "cost free membership" of this board please sign up. We need your input.
A tidal wave of good wishes is heading your way.
Hugs,
Marion
The study title is a genotype-guided dosing study of mFOLFIRNINOX in previously untreated patients with advanced gastrointestinal malignancies.
Protocol # 12-0033
LeeAnn....this is the trial:
http://clinicaltrials.gov/ct2/show/NCT01643499
Hi LeeAnn,
My mom (age 54) has started the Folfirinox trial at University of Chicago this summer. I don't believe we have had any problems with our insurance (BCBS). She has just received her 4th treatment and we will be doing our first scans on Monday. Mom had to get the port, which was a quick procedure- but she still does not like it at all. The first treatment was the absolute worst, but the ones after have been pretty good. After reading on here and elsewhere about people's reactions, I have seen that everybody is different. Her main side effects are tiredness, mouth sores (make sure to get a prescription rinse to prevent and help when they pop up), leg cramps and her hair has started thinning some. Many people have severe diarrhea, luckily she pops an Immodium on the first episode and it subsides quickly. She had missed a couple treatment days due to low white blood cell count and last week she had developed a rare infection from the biliary tree, so she was hospitalized for a bit to make sure things were ok. Some advice I can offer, the doc had prescribed anti-nausea meds on days 1-3 of chemo (until the 5FU pump was disconnected) but we found taking the Zofran and other meds through day 5 was much better for her (I think that is what made the 1st treatment so crappy!). She has been eating great and her energy level is through the roof- she takes her pump and goes on her daily power walks nearly every day. She's a total warrior!
I wish you all the best and pray things go well for you.
Kristina
Kristina-Welcome I am a CC survivor. I live in IL. across from St. Louis MO. I am glad your mom is tolerating treatments. I also took 3 anti-nausea meds on a regular basis to prevent troubles.I also have BCBS and they never gave me any grief or added to my woes, I have 2.5million dollars worth of claims!!! I was your mom's age when diagnosed. I have to been "Hell" and back and survived! Please share my FB page (Catherine Sims Dunnagan)with your mom, I keep my story and two other success stories on it, it is full of HOPE!!
Lots of prayers and HOPE-Cathy
Kristina, heard from hospital with my genotype analysis and said that I wouldn't be able to tolerate irinotecan. So no clinical trial for me. I'm going in next Monday to put port and starting gem/cis next Friday. What days is your mom getting her chemo there? Fridays are my chemo days, and my onc is Dr. Catenacci.
LeeAnn,
I hope the gem/cis combo does wonders for you! I will keep you in my prayers. I think irinotecan is the toughest one on my my mom- it is hard to tell which drugs have which effects, but I feel like she starts to get worse once that bag goes in her. I hope your port procedure and first treatment went well. We go in on Mondays (since she is hooked up to the pump, we wanted to have her weekends free to do things) and we have the same oncologist! It is a bit of a ride for us to U of C (we are a bit north) but so far, no complaints about him. The nurses in the treatment suite are very nice. We get the results from her first scan this Friday. It has been a really tough week this past week, but I hope for good things this week.
Keep me updated on yourself- I wish you all the best to come...
Kristina....I suspect that you are right re: Irinotecan as it is very difficult to tolerate.
Hugs,
Marion
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