GREAT NEWS – MERCK DRUG (Keytruda) is WORKING!!
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maria …you are welcome. We are addressing the problems with clinical trials difficulties. Changes are under way.
Opdivo also is a PD-1 inhibitor undergoing clinical trials, as is Tremelimumab. The options are increasing as moleculars and immune checkpoint inhibitors are at the forefront of cancer research. Depending on the molecular alterations of your Mom’s tumor, other targeted agents may be available. But, all are under investigation in clinical research studies.I addressed both Tapur and MATCH in my presentation at our annual conference:
http://cholangiocarcinoma.org/misc/2016-cholangiocarcinoma-foundation-annual-conference/2016-in-review/
Day 2, Clinical
scroll down to:
CCF Advocacy Update – Marion Schwartz, CCF Chief Advocacy Officer
Hugs,
MarionMarion,
Thank you SO SO much. I appreciate this more than i can say. Our oncologist had told us about the MATCH trial but just that it had been postponed– i didn’t even know the name. It’s so good to have some more information to look into, and I had absolutely no idea about TAPUR. Looking into clinical trials online has been overwhelming, especially since we are so far away from all of them, but you’ve really given me some excellent leads. Thank you from the bottom of my heart for your kindness to me and everyone on this message board.
maria….you are more than welcome. Your Mom may carry the PD-1 expression, but if not so, then other targeted agents may be available as well.
The ASCO TAPUR study will open soon. Being that your Mom is located in Alaska, this may be something to look at. Oncologist can prescribe off label.
http://www.asco.org/practice-research/targeted-agent-and-profiling-utilization-registry-studyAlso, the MATCH study, but this one will require fresh biopsy:
http://www.cancer.gov/about-cancer/treatment/clinical-trials/nci-supported/nci-matchmore info: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=100800#p100800
Hope this helped.
Hugs,
MarionMarion,
Thank you so much for your reply and for passing along that information. I will look into those studies. I appreciate it!
maria….I am hoping for Colleen to read your message. In the meantime though I would like to share with you this information.
It is estimated that 20% to 40% intrahepatic tumors express the PD-L1Monoclonal Antibody. This however; must be validated via biopsy. Presently clinical trials are investigating the efficacy for our cancer and none have been approved so far.
Clinical trial open for accrual, most like there are others as well:
https://clinicaltrials.gov/ct2/show/NCT02628067
https://clinicaltrials.gov/ct2/show/NCT02383212
Hugs,
MarionColleen,
Did your mom’s cancer express a specific mutation? I’m looking into Keytruda for my mother, very encouraged by your mom’s good news. But wondering whether she qualifies based on gene mutation. Thanks for any info you can provide!
Maria
Congratulations on Keytruda working for your mom – I think that is amazing. I really hope they approve this drug ASAP for people with different cancers and that it’s not $10k/month. We have a little ways to go in getting drug companies and insurance companies to cooperate with one another. Everyone’s survival seems to depend on that. Again, though, I’m happy to hear this drug is working so well for your mom, Colleen.
Hi Marion and Melinda,
Thank you so much for your thoughtful words. We are so thrilled. It really is a medical miracle. Hoping and praying that her body continues to keep fitting off the cancer, even after the trial is over. Keep you all posted. Thank you again for everything.Love,
ColleenColleen,
What a great update from mamma Wong! I am beyond happy for her and your family. NED is a great friend to have. Praying this treatment will soon be more available to others with just as good of results.
Tell Rose to continue to enjoy life, and especially those twins!
Love and hugs,
MelindaColeen….your Mom’s report warms my heart and I am overjoyed to read of all the wonderful happenings in her life. Wishing for all good things to continue.
Hugs
MarionHi Lainy,
Thank you so much for your kind words. I will definitely relay them to my Mom.
Take care!Best,
ColleenDear Rose, what a lovely, lovely post and wishing for your 2016 to keep on shining on! NO Cancer and TWINS! How awesome is that. ENJOY your life and please check with us again and let us know how amazing everything is going! YEAH!!!!
Hi! Hope everyone had a good NY. I wanted to give you an update on my mom. She’s STILL doing GREAT and we are sooooooo incredibly thankfull! Please see below for an update from her. Sending lots of love and hugs to all of you. Stay strong and never give up hope. Take care.
Note from Momma Wong:
It’s hard to believe 2016 is already here.
As I reflect on the events of the past year with its ups and downs, I can honestly say there were
more ups than downs.
The birth of the twins was certainly the most joyous occasion. And more good news is a recent
PET scan taken in November does not show any cancer. My oncologist says the word
“remission” is not used in my type of cancer (cholangiocarcinoma), nevertheless, it is wonderful
to know that at this time the scan does not detect any cancer. When my clinical trial ends in
June, the hope is this immunotherapy will continue to fight any new cancer that may manifest
itself. The amazing thing about this drug is the immune system continues fighting cancer cells –
even when I am no longer on the drug. I am very fortunate that I continue to do extremely well
and live a completely normal life.I am grateful for everything that I have and pray I have the strength to deal with any new
challenges life throws my way. What makes me happiest is family and friends. It is the support,
love, and kindness you have shown me that has carried me this far. I just want to say thank you
from the bottom of my heart for always being there for me.Here’s wishing 2016 will be filled with laughter and good health for you and your loved ones!
Love,
RoseColleen,
I am so happy that your mom is doing great and living live to the fullest! I think about you guys all the time and always keep you in my prayers!! Thanks for the update and give Rose a big hug for me! Hugs and love to you,
Melinda
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