New scan shows Gem/Cis not working, need new recommendation
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Rod,
I’m so sorry to hear your story and it’s challenges – but don’t give up, you never know what lies around the next curve. My partner was diagnosed 4 years ago – and tolerated the GEM/CIS combo quite well -which is still the “go to” standard for this cancer…he didn’t meet the criteria at the time for clinical trials so you should explore those. He is having some challenges right now – but after over 4 years he’s beaten most of the odds (without any surgery).
We did initial staging at Mayo Clinic in Rochester, MN and did a second opinion at MD Anderson in Houston. The Houston group has been AMAZING! They state that they review more CC cases than anyone else (although MD does a lot too), but it’s still pretty rare of course. Anyway – we have been going there for 4 years and they are truly remarkable with their insights and knowledge.
Best of luck!
tom
Rod,
What about SBRT? my team has successfully killed four tumors with this type of radiation. Have you read about Melinda Bachinnis clinical trial at NIH, she is doing really well. Sending hugs and prayers.
LisaRod….have you had molecular testing?
Also, you might want to take a look at Percy’s comprehensive listing of drugs and side effects. http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=66306#p66306
Current clinical trials are listed on our site:
http://cholangiocarcinoma.org/professionals/research/clinical-trials/
Melinda’s research study:
http://www.clinicaltrials.gov/ct2/show/NCT01174121
Good luck, dear Rod, and please keep us in the loop.
Hugs,
MarionRod,
I’m sorry I don’t have a suggestion (we have only done Gem/Cis and SIRT), but wanted to tell you how much I admire your journey so far and will be rooting for you to be around to see your son grow up. I’m hoping the clinical trial that may be ahead of you will make you another CC poster child like Melinda B.
Good luck,
Catherine
Had a new scan yesterday after 6 rounds of Gem/Cis. Scan showed new spots in the liver and some of the pre-existing spots had grown. Luckily nothing is immediately life threatening and I feel relatively good considering CC is continuing to spread in the liver and remains in the lung and lymph node.
When originally diagnosed 3 years ago I had a resection and 3 months of Gem. CC stayed away for 18 months and then returned. Had microwave ablation. Returned again and had cryoablation. Returned again and did Gem/Oxy and this wiped the cancer out. It returned yet again 3 months later and that is when I started Gem/Cis. The numbness from the Oxy the first time kept us away from it again.
My oncologist is out sick today so haven’t been able to talk to him about what he recommends next. Will be talking with him early next week and would like to have some options to discuss with him. I am 47, good health other than CC, have a 4 year old son I have no intentions of leaving early, am a good fighter and in the mood kick the crap out of this stuff. Looking for next option whether it is another chemo drug (Folfox or whatever?) or any clinical trial.
I received a second opinion from Dr Chapman at Barnes Jewish prior to starting the Gem/Cis. He specializes more in surgical solutions and recommended same thing as my local oncologist. Also received a second opinion from Mayo through my local oncologist and they also recommended the Gem/Cis. They had a possible clinical trial but couldn’t recommend it over Gem/Cis. Don’t recall what this was but this may be what I try next. Can anyone recommend any other hospital or cancer center that may be better for a second opinion for someone in my situation?
Thank you for reading. Best wishes to any all affected by CC.
Rod
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