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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,
Thank you Melinda
Thank you all so very much
Thank you all. You have been so kind and your wonderful words mean a lot. We will be asking for donations to the Cholangiocarcinoma Foundation. I am confident that, with this tremendous group championing the cause, it is only a matter of time until we find the answers we have been searching so hard to find.
With deep appreciation,
Karen, thank you so much for all of that terrific information. I really appreciate it!
Karen and CC FIghting Family, my mother has been experiencing similar fluid development and retention issues and has a catheter in her belly that we use to drain about a liter per day. I understand the causation is likely due to protein deficiency caused by liver function issues related to cancer progression. Mom is also on TPN due to issues with eating and appetite. Is there any treatment or medication to increase or supplement Albumin levels?
Right now, mom has had one infusion of Keytruda two weeks ago and we are exploring with her oncologist the use of Dasatinib/Sprycel given that she has the IDH mutation in her cancer.
StevenJune 22, 2016 at 9:30 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90226
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!
StevenJune 21, 2016 at 7:13 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90223
Just to provide an update on my mom’s situation, we have had quite a few gut wrenching weeks trying to get her started on the “Selumetinib in Combination With MEDI4736” trial at the local participating facility (Rutgers/New Jersey Cancer Institute) — https://clinicaltrials.gov/ct2/show/NCT … amp;rank=2. Mom was all set to get started last Tuesday 6-14 with Dr. Ann Silk’s team at Rutgers (the trial can be started on Tuesdays only). She had a fever the Weds prior and was hospitalized at Morristown Memorial with possibly pneumonia, so they gave her antibiotic as a precaution. When the trial team at Rutgers was informed, they said she could not start on the trial with a possible infection and/or because she was on antibiotics so soon before the start date. The Morristown team immediately took her off of the antibiotics since she did not necessarily have an infection, but it caused us to miss that Tuesday window. We then went back down to Rutgers this past Friday (6-17) and had another battery of tests that all came back good and clear, so she was set to start this morning (Tuesday 6-21) on the trial and we were all hopeful.
Rutgers then called yesterday to tell us they needed to re-do her echocardiogram within 14 day window of start date as a trial protocol. We then got the horrible news that they unexpectedly found fluid around the heart and they are telling us that, with that, she is “too sick” to be on the trial. We have her back at Morristown to deal with the fluids and they are putting in drains in both the lungs and heart, and possibly the belly as well to be able to drain the accumulating fluids. Unfortunately, by gearing up for the Rutgers trial and trusting all of our proverbial eggs in that basket, we have now not been able to treat the cancer for over six weeks (due to wash out and eligibility requirements). The last treatment that provided any kind of positive result was the Agios-120 trial, that unfortunately just was not positive enough for them to allow us to continue on that trial (she almost certainly would be in much better condition today if she were permitted to stay on that trial).
We are now left scrambling to see if there is any way she may be able to re-qualify for the trial, or otherwise start chemo as soon as possible once the incisions heal and continue our application for Keytruda, which we submitted last week to the Merck Access Program under the care of Dr. Michael Scola at Morristown Memorial; or otherwise go back to square one of exploring whether there are any other promising alternatives out there that she can get started on rather immediately.
We all realize (with maybe just a little denial) what the fluid and related symptoms mean with respect to the advanced stage of her cancer, but she is a fighter and not ready to give up, nor am I or anyone else in my family.
If anyone has any suggestions with respect to expediting the Merck Access Program process or otherwise, I would certainly appreciate anything you can share.
Thanks to all for reading this and for all the help and support over the past year. This community has been such a tremendous blessing and source of support.
StevenMay 26, 2016 at 8:37 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90205
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.
-StevenMay 25, 2016 at 2:23 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90203
Thank you so much MarionMay 24, 2016 at 12:40 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90199
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,
StevenMay 18, 2016 at 12:06 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90197
Thank you very much MarionMay 17, 2016 at 1:24 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90195
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.
StevenMay 6, 2016 at 2:00 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90193
Anatta, my Mother was on the trial for about 4 months with some success. She was recently removed from the trial and is now on the following trial at Sloan Kettering – https://clinicaltrials.gov/ct2/show/NCT02675829?term=Her2&lead=Sloan&state1=NA%3AUS%3ANY&phase=1&rank=8.
With the Agios trial, there was some very positive news with stability and shrinkage of some of the tumors in the liver area, and she tolerated the drug extremely well. Unfortunately, growth of a few of the lung tumors continued slowly so they apparently disqualified her from the trial.
The above-linked HER2 trial was suggested as a next step because she has HER2 amplification as well and we have no obviously better options. Unfortunately, after the first round she is not tolerating the chemo aspects very well.
We were also considering applying for Keytruda off label or another pd1/l1 related treatment but we are unsure if she has that amplification.
As for Agios, again, there were some very good results and reasons for hope. I understand also that Agios has another trial drug AG-881 that may be achieving even better results. Sloan told us mom is on the waiting list for that trial. We are also keeping an eye on the ASLAN developments out of Asia but apparently there are no options as of yet for the US.
Let me know if I can provide any other information.
Best of luck!
StevenFebruary 5, 2016 at 3:19 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90189
Thank you so much for your thoughts and kind words Marion and Melinda! I will definitely stay in touch.