August 29, 2016 at 6:27 pm #84717spaperaMember
I apologize for the delay in posting this since my mother’s passing on August 3rd, but I have wanted to update the group for some time on her experience with Keytruda (pembrolizumab) and Sprycel (Dasatinib) in the months before her passing. As described in some of my prior posts, my mother received Keytruda through the Merck Access Program and Sprycel through the Bristol Myers Squibb Sprycel Assist Program. She received two rounds of Keytruda and the 100 mg tablets of Sprycel orally. We had some apparent complications with the Sprycel clearly causing some kind of internal bleeding. We drained her abdomen daily (usually twice daily) and the fluids would turn red with traces of blood when she had take Sprycel, and it would resolve itself if she did not take it for 36 hours or so. Thus, we were eventually guided to stop with the Sprycel out of concerns for bleeding issues, so she probably only took about 9 pills overall.
In any event, mom was hospitalized on July 26 with breathing issues and we, along with the doctors, were shocked to discover from scans taken at that time that her tumor burden had not increased in any material way since the prior scan 5-6 weeks earlier. Thus, we have reason to believe that the Keytruda was indeed “working” even though mom’s PD-1 test from MSK was negative. To be sure, this is not conclusive evidence, but we were hopeful that eventually it would work well enough to not only stop the growth, but turn some of the tumors back. Unfortunately, we ran out of time. Again, no conclusive medical determinations were made as to the efficacy of the drugs, but the doctors were amazed that the tumors had not grown and were cautiously optimistic that Keytruda was working a miracle until, again, we unfortunately ran out of time as the fluid build-up in and around mom’s lungs became too much. It is also entirely possible that the Sprycel was contributing to the halt of the tumor growth. We just don’t know but, again, I felt it was important to share this experience with the group.
All the very best,
StevenAugust 16, 2016 at 1:44 am #84716
Rose and Colleen…..overjoyed is an understatement, this is such incredible news that words nearly fail me. I wish for continued good health and wish for the cholangiocarcinoma experiences experience to only be a bump in the road of living life to the fullest.
MarionAugust 15, 2016 at 3:06 pm #84715debnorcalModerator
Dear Rose and Colleen,
Thank you for posting your update. Awesome news!, I’m so happy for you. This will be very encouraging for so many others!
Wishing you continues good health.
DebbieAugust 15, 2016 at 9:42 am #84714middlesister1Moderator
I love when I can start my day reading such a wonderful post. I am so happy for both of you and thankful for the hope that you are giving to so many!!!
CatherineAugust 15, 2016 at 2:26 am #84713
*LainyAugust 15, 2016 at 2:24 am #84712
Thank you SO much Lainey! We are so thankful for your support and for the support of the entire CC community! Will definitely keep you all posted. Take care!
ColleenAugust 14, 2016 at 7:42 pm #84711lainyMember
Dear Rose and Colleen! OMG! Every time I read about the wonders of Keytruda I am so overjoyed I feel as though my heart is going to explode with happiness. Way to go Rose and at 76 years old I cannot help but imagine doing my cartwheels!!! What a team you gals are and just enjoy, enjoy!August 14, 2016 at 5:56 pm #84710
Hi everyone! Just wanted to post an update from my Mom. She just completed her 2 year clinical trial on Keytruda at UCSF. She is doing great and there is NO sign of cancer!! We are beyond ecstatic and wanted to share the news with our cc family. We hope that this provides hope to everyone fighting this horrible disease. Thinking of all of you….
Note from Mom:
I hope all of you are well. Here is quick update of what is going on in my life.
My last treatment with the immunotherapy drug, prembrolizumab, was on June 1, 2016. The protocol for this clinical study allows a participant to be on the drug for two years and is then taken off the drug. If the cancer reoccurs within a year, one can resume the drug. As some of you may know, this drug has been FDA approved for melanoma by the brand name Keytruda and for non-small cell lung cancer by the brand name Opdivo. You’ve probably seen the commercials on TV. More immunotherapy clinical trials are being conducted with the hope it will be effective in treating other types of cancer. I truly feel it is the wave of the future for better cancer survival.
The good news is I currently do not show any evidence of disease. This drug has proven to work for me and remarkably without any side effects. I was actually able to go about my normal daily activities -without anyone knowing I was battling cancer. I feel absolutely fine.
I am so grateful for my good fortune. My focus on life now is to spend time with my family . . . to enjoy and watch my grandchildren grow . . . to renew old friendships . . . and most of all, to be thankful for what I have. Life is unpredictable – we never know what the future has in store for us.
I’ve said it before and I will say it again. I would not have made it through this journey if it weren’t for the love and support all of you have given me. I wish each of you good health and happiness.
Thanks so much!
RoseJuly 15, 2016 at 10:59 pm #84709
This study is closed to new recruits:
https://clinicaltrials.gov/ct2/show/study/NCT02054806?show_locs=Y#locnJune 18, 2016 at 11:23 pm #84707darlaParticipant
You can also click on ctwong81 and then on view all posts. It looks like her last posts were in March of this year. You may find your answer there.
DarlaJune 18, 2016 at 10:23 pm #84706
konniestwin…clicking Colleen’s s signature box (ctwong81) brings you to her profile with e-mail address. Perhaps she will answer your question,
MarionJune 18, 2016 at 6:13 pm #84705konniestwinMember
I’m wondering if there have been any updates to ctwong81’s posts about her mother’s treatment with Keytruda? The last one was about two years ago. Thanks!April 13, 2016 at 3:57 am #84704
Natalia….welcome to our group.
I have learned that Immune checkpoint inhibitors actually can cause progression, which then is followed by regression. Perhaps the next test will prove this to be the case for you as well.
Many others have been treated with Ketyruda and others are in the same clinical trial as you. Hoping for others to chime in to help us find the answer to your question.
MarionApril 12, 2016 at 7:03 pm #84703natasha77Member
My name is Natalia and I am from Russia. I recently joint to the clinical trial for keytruda and I had the 1st infusion just a week ago.
I will highly appreciate if those who had tried keytruda could share the first effect and feelings just after the 1st infusion. I faced with huge pain in tumors and increase of tumors. I heard that such could be. But how long such effect stay? ( days, weeks…?)
NataliaMarch 17, 2016 at 3:23 pm #84702sharonandphilMember
Thank you so much for posting this information. We are looking into the clinical triall that is currently taking patients.
- You must be logged in to reply to this topic.