Keytruda failing, feeling desperate, advice needed quickly

[Faith1111]

Quick update: 58 yr old brother, mmr mutations high tumor burden started Keytruda 8 months ago. Worked well, until last 3 PSA levels rose 18 25 28 45. Each w/in 3 wks. ALP dropped 3 times from high of 165 to yesterday 109. Mets are extensive but Scans show no new mets or growth since last scan. Problem is all lymph nodes have enlarged. Chest, neck, groin etc. MO stoped Keytruda. We were shocked and not ready for that news. Very emotional.

Question: MO offered new trial 1/2 of DS7300a. He would be first patient at Dana for prostate trial. My brother is ready to give up. He doesn’t know much about the trial but doesn’t want something so new and dose escalating. The other alternative is to do chemo again. He did very well on Docetaxel three years ago and she said she would give it to him again. Could that possibly shrink some lymph nodes? Third option is possibly a BAT trial. She wants his decision tomorrow about the trial. We don’t have long to wait in between treatments. He looks so young and healthy and it is breaking my heart. He has young daughters and a wife. I guess I knew in my heart it would come to this at some point but I’m still not ready and this is awful news right before Christmas. Any advice would be greatly received. Faith

[NickJoy]

Faith I have no idea if it is suitable or not but I think there is a very promising CART trial at that hospital - hopefully somebody knowledgeable can advise on the trials you mentioned. I hope all goes well with whatever your brother selects.

[Faith1111 in reply to NickJoy]

Thank you for your response NickJoy. I believe that is a PT 112. I think his doctor is involved with that trial but she said he no longer qualifies.

[tango65]

There are clinical trials for Lu 177 PSMA and also for Ac 225. If the cancer expresses PSMA it could be a possible treatment which has shown to prolong life. It is a systemic treatment against cancer anywhere in the body (bone, lymph nodes and visceral mets).

clinicaltrials.gov/ct2/resu...

DS 7300 is an immunotherapy trial related to the check point inhibitors which has had some efficacy in some solid cancers:

businesswire.com/news/home/...

cancer.gov/publications/dic...

[Faith1111 in reply to tango65]

We are somewhat familiar with LU. We have asked her several times about when it is coming to Dana Farber. It was supposed to be here last fall she now said it won’t be at the hospital until this coming year sometime. She said there was no sense getting a PSMA test until it was actually there. Not sure if insurance would cover out of state for other trials. I will look into it further however. I’m open to all options and appreciate all of the responses. Thank you so much for your reply Tango.

[tango65 in reply to Faith1111]

Most trials do not charge for the specific treatment, in this case Lu 177 PSMA. They could charge for some tests used in the regular follow up of PC.

Medicare will cover out of the State, unless it is a managed plan such as an Advantage plan and it is out of network.

My experience is that most doctors will not offer clinical trials if they or the institution where they work is not involved.

I will consider this trial in particular:

clinicaltrials.gov/ct2/show...

I wish you the best of luck!!

[Faith1111 in reply to tango65]

Thank you I just checked it out and it looks promising. I see that there is another trial being done in New York as well at Memorial Sloan Kettering. I will check with his doctor tomorrow. Thank you so much!

[tango65 in reply to Faith1111]

Dr. Tagawa have some data about Lu 177 PSMA and the Ac 225 attached to the antibody J591 which seems to have less negative side effects in the salivary glands than the Ac 225 attached to small molecules:

urotoday.com/conference-hig...

urotoday.com/conference-hig...

[Faith1111]

It’s definitely worth asking her again. They are using this other trial for lung cancer. The trial has not included prostate cancer yet. She is trying to become part of that team and I feel like she’s trying to recruit someone as her first patient. I love her as a doctor but just think this trial may not be right for my brother. I will talk to her tomorrow regarding carT once again. I feel it would be more hopeful then more chemo

[Faith1111]

Nal do do you know where those trials are being done?

[Chugach]

Faith, I am so sorry to hear this news. My heart is filled with sadness for you and your family. My PSA is also rising on Keytruda but not as fast, yet. I think my spouse is in denial about what that means (I’m 51 and also with young kids- teenagers now). I did a hight T trial and it didn’t work out well for me, but it felt good to have High T again. I don’t know about the other trial. Seems to me like trials at this point are mostly about building the science for the men who follow rather than finding a Hail Mary; and chemo is about trying to buy more time.

I DO know what it is like to be in this spot .. Sadly this is not a fight we can often ‘win’ at this time. Because of that, trials can be thought of as honorable last move that sometimes work but more often help to build the science for those who follow. Keeping the dragon from waking is often the best we can hope for.

I don’t know if I would do chemo again. BAT might feel good getting the Testosterone back in spurts.

If Keytruda fails me, I plan to not fight the current but rather just go with the river.

Thinking of you guys.

[Faith1111 in reply to Chugach]

Thank you for your inspiration, your kindness and always being there for us whenever we post some thing. I do know I have never met anyone on this forum but I also know I have never met such a group of kind, caring and sincere people. Everyone is in the same boat here. It is a time of anxiety, fear, sadness and sometimes desperation as we reach out for any shred of hope. People care for each other on this site. They are generous with their time and their advice and I feel a true sense of compassion. Although times are tough It can bring out the best in people. Bob is really considering doing nothing as you said and just going with the flow. The thought of all those needles pokes and prods traveling hundreds of miles back-and-forth is not appealing at this stage. I don’t know what he is going to do but I do want to thank you and everyone else here, sincerely from my heart. Faith

[Longterm101 in reply to Faith1111]

I talked with Bob today and he’s leaning towards BAT. I’m praying for him

[Chugach in reply to Longterm101]

I think BAT could feel good - getting some High T after ADT

[Faith1111]

Yes

[Vindog29]

I am so sorry that Keytruda is no longer working I was such a cheerleader for your brother in that it would work miracles for him as it did for my husband. He was so hopeful and in the last chat called me his friend but something inside me felt wrong, I wish my premonition was not right. It is not failure or end of the road just a detour, he is such a kind person I pray he finds that better road.

[j-o-h-n]

Hello Faith1111,Tell your brother....God is on his side.......

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/10/2021 1:50 PM EST

[Faith1111]

I believe you are right! Thank you for your support John. Bob spoke to his doctor twice today and was able to get into a car T trial that is being held at Dana-Farber. I feel it is a Hail Mary. While I don’t know how well he will do on it, it is giving him hope and it feels wonderful. After devastating news and lots of tears we once again are back in the fight. I hope you have a wonderful Christmas. I always enjoy reading your posts! Thank you again for your support. Faith

[Lavender22]

Sounds like a new way forward. Best of luck to your brother.

[MateoBeach]

The Phase 1 dosing trial of Lu plus Ac that Tango65 linked would be my top choice if he is eligible and they can start treatment fairly promptly. Particularly good in the lymph nodes. No placebo arm.BAT could be tried per protocol if a current trial is not available. It certainly will make him feel better promptly. Only patients that have a small or moderate rise in PSA with the first two weeks of high T, and then the PSA returns down towards baseline with the two week castrate T level should continue with cycles. If it progressively aggressively rises then it must be promptly discontinued. No way to know in advance without test cycle. (I am on a modified BAT program with longer cycles and doing well with it. However, my PC is less advanced so lower risk.) best of luck. Paul

[DarkEnergy]

Hi there, I'll be visiting BWH every day from 12/13/21 to 01/21/2022, for radiation treatment, tell your cool brother, Bob, we can have lunch any of these days...

[Faith1111 in reply to DarkEnergy]

That sounds like a plan!!! We will be in touch!