spapera

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,
Steven

Karen, thank you so much for all of that terrific information. I really appreciate it!

Very best,
Steven

Thank you very much Marion and Bostonguy — also terrific to hear that initial lab results are looking good. The AG-120 was certainly a positive experience for my mother and wish she could have stayed on it longer. Thanks again and all the best!

Sincerely,
Steven

As a follow-up to the above thread, Sloan Kettering has a spot for my mother on the AG-881 trial I previously mentioned, which is a trial similar to the prior trial she was on that had some decent results (the AG-120). AG-881 is purported to be a next generation version of the AG-120 drug that, in the lab has been found to be a more potent inhibitor of the IDH 1-2 pathway. It is in Phase I stage so it is surely purely investigational and working towards determining appropriate dosage levels. It is a rather intensive trial and if she qualifies will require many batteries of testing and monitoring including biopsies, so it is no cake walk and, as with all trials, uncertain in efficacy. One positive with the biopsies is that Dr. Harding said they could test the tumors again for any other genetic driver mutations that might help with future treatment.

The other options are more standard line chemo, pursue other trials that might include pembro/Keytruda, or pursue obtaining pembro/Keytruda off label.

We also just recieved a call from Rutgers Cancer Institute of New Jersey letting us know they now have a spot open for Mom on the this immunotherapy trial (https://clinicaltrials.gov/ct2/show/NCT02586987?term=SELUMETINIB&state1=NA%3AUS%3ANJ&rank=2).

We basically need to make a go, no-go choice by the end of the long weekend so I am scrambling to try to understand what offers the best hope. If anyone has any thoughts, recommendations or experience with any of these options, I would really appreciate any information you could share.

On Tuesday, she had about 2.3 liters of fluid drained from her abdomen, which has offered her some relief, but I know we are surely at a critical juncture.

Thanks so much.

-Steven

Hi Paul, we have had many of the same experiences and concerns and we are also now searching for new options as my mom’s participation in the Trial of Ado-Trastuzumab Emtansine for Patients With HER2 Amplified or Mutant Cancers at Sloan Kettering has been halted due to progression and tolerability concerns. After taking a week to rescan, regroup and survey options, we are going back to Sloan tomorrow to visit with Dr. Harding to assess our options. My mom has not handled any chemo well so I know she is hoping and praying that we can find a way to get treated with an immunotherapy alternative like Keytruda, although we understand the difficult odds with Keytruda and we are in the same situation with the predictive tests and no access to trial biopsy results. I will be praying for you and your mom and will certainly share any meaningful news or information that I find.

Does anyone have any intimate knowledge of the new drugs developed by ASLAN Pharma out of Singapore? I know there has been some very positive news and awards for their cutting edge treatment, as well as FDA approval but I reached out to the only contact I could find and was graciously informed that there are no current US treatment options. If anyone knows of any other way to be considered for this treatment, I would be immensely appreciative of any information you can provide.

All the best,
Steven

All the best to you Paul. You are correct that the primary goal of the Agios drugs is to shrink or stabilize the disease and the doctors are careful not to use the word “cure”.

I also agree that in the realm of possible cures, drugs like Keytruda and Opdivo are offering some of the best hope but seem to be effective in the minority of cases with apparently little certainty in the medical community as to what exactly dictates effectiveness. Some institutions test for pd1/pdl1 and some do not, partly, I understand, because those tests are not conclusive for all tumors/portions of tumors.

I am looking towards Keytruda as possibly the next best option for my mother because she is not at all tolerating the latest HER2 trial treatment at Sloan Kettering.

A quick question for Marion and the rest of the wonderful community here — do we have any sense of the Keytruda success rate in treating CC patients? Also, please do correct me or elaborate if you think anything I stated above is behind the times or not fully accurate.

Many thanks,
Steven

Thank you so much for your thoughts and kind words Marion and Melinda! I will definitely stay in touch.