Keytruda, a question probably no one ... - Advanced Prostate...

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Keytruda, a question probably no one can answer.

Faith1111 profile image
Faith1111

For anyone on Keytruda who is having a good response, how long did it take before a response? I know there are so very few men on it because it takes some rare mutations usually to respond well. My brother had some of those mutations. We thought we were blessed. Unfortunately, not only did the keytruda not work, his PSA rose from 39 to 105 in three weeks. He is devastated, depressed and feels he is nearing the end. He has ripped through all standard of care treatments and nothing seems to work for very long if at all. He was given the choice to start chemo or do one more infusion of Keytruda. He chose the infusion of keytruda only because his ALP dropped 40 points and he doesn’t want to give up too soon. If PSA does not respond within these next two weeks, he will start chemo reluctantly. His doctor said LU May be available to him by early fall. He has done Docetaxel early on so this would probably be cabazitaxel. It breaks our hearts to see him so depressed. He is young only in his 50s with a young family. He has a very supportive wife and lots of family and friends who love him. I have spoken privately to a couple of people on this forum who I know have had a wonderful response to keytruda. Is there anyone else with experience either way? Thank you in advance for responding. This forum is a blessing

34 Replies

By cycle 3 my PSA went from 86 to 1.3 then to undetectable

10/8/19. - 74.82 PSA; Taxotere

10/28 - 76.80 PSA; Taxotere 10/29

11/20/19 86.12 PSA; Keytruda #1

12/?/19 No PSA; Keytruda #2

12/30/19 1.38 PSA; Keytruda #3

I did some concurrent palliative radiation to some bone mets due to pain. Apparently it also helps damage the PC in a way that the Keytruda can find it easier. Stay strong!!

Faith1111 profile image
Faith1111 in reply to Chugach

Thank you. It looks like you did not have a PSA done after The first infusion. That’s where we are at right now. A critical turning point. Bob’s drastically went up. So, will it start to decline now that he’s had a second infusion? That is the question and although I am a positive person, it seems it would take a miracle to turn it around. All we can do is pray and accept whatever happens.

Chugach profile image
Chugach in reply to Faith1111

I’m not sure why PSA was not tested before #2. But I was told it might take 2-3 cycles to turn it around. Keepthe faith and stay strong!!!

Faith1111 profile image
Faith1111 in reply to Chugach

🙏🏻💞

Chugach profile image
Chugach in reply to Faith1111

My MO knows how I worry between PSA tests. Perhaps she didn’t order #2, anticipating a PSA rise, and wanting to save me the worry??? Please keep me posted and I will hold your brother in my thoughts hoping for wonderful news. Stay strong!!!

Faith1111 profile image
Faith1111 in reply to Chugach

Thank you for your support. It means so much! 💞

What were all the Mutations, thought to be a Blessing?Are you still seeing Dr. Beltran?

Nal

Faith1111 profile image
Faith1111 in reply to Nalakrats

Yes Nal, we are seeing Dr. Beltran. His mutations were MSH2, MSH6, MSH3, Pten loss, CDK 12. He was not MSI high however. He did have a high mutational tumor burden. There are numerous other mutations that have developed at this point

Nalakrats profile image
Nalakrats in reply to Faith1111

CDK-12 appears to be the driver---CDK--inhibitors are many in test now--but mostly against--->CDK 2,4 6. I do not know if any of these half dozen drugs will work against CDK-12---Beltran would know.

I asked about Morgantaler, as there is a Process he is using which I can then do an add on.

He is using 3 Months of Supra Physiological doses of Testosterone Cyprionate, followed by one month of Xtandi. This in layman's terms Primes the Pump, and a selected Checkpoint Inhibitor is then used, such as Opdivo--to affect the activity of PD-1, on the Killer T cells, and hopefully expose the PD-L1 protectors on the cancer cell to allow for Programmed Death.

IMO, there should be discussions in this area. That is why I asked about your conversation with Morgantaler---I do not think he then added the Checkpoint Inhibitor, after the 3 months of T, and one of Xtandi, in his latest work--but I am suggesting it as a possibility--There may be one Article/paper at PubMed on this?

Trying to think outsides the box here.

Nal

MateoBeach profile image
MateoBeach in reply to Nalakrats

I heard his description of that protocol and find it very intriguing. Just on his grand rounds recorded presentation at the end. Haven’t seen anything published on it yet.

Nalakrats profile image
Nalakrats in reply to MateoBeach

I believe there is one Pubmed hit on this---[Extreme Testosterone Treatment of Pca], is what I remember seeing--where the Checkpoint Inhibitor is added. Rest of info comes from individual MO's doing their own work with their patients on an individual basis--yes the info is definitely skinny. Dr. Morgantaler, has added his new protocol to the mix.But the whole thing makes sense---but again may work for a % less than 25. The High T is breaking the double strands of the DNA of the cancer Cells, so we have a certain amount of death, in 3 months, the Xtandi, comes in and sensitizes what is left and blocks left over T, and any Cancer Cell Component garbage that were broken up, from linking to the AR of survivor Pca Cells---and the Checkpoint Inhibitor, takes advantage of the disruption of the PD-L1 proteins guarding the cancer cell from attack from the Killer T Cells, as the Killer T Cells can now see the enemy. Its complicated no doubt. But I can see this as a plan--with what I know on this subject,

Nal

MateoBeach profile image
MateoBeach in reply to Nalakrats

Thanks. I did find the Markowski article that used regular BAT timing rather than continuous for three months and extreme PSA response from nivolumab (anti PDL-1). Morgentaler’s protocol of 3 months continuous SPT followed by one month enzalutamide is a variation that looks promising.

Nalakrats profile image
Nalakrats in reply to MateoBeach

Morgantaler is reporting very good results--nothing published--but he has a long list of treated patients.

Nal

Peterd110 profile image
Peterd110 in reply to Nalakrats

What about chk2 mutations? I have chk2 and brca2 Would either qualify me for a trial of keytruda?

Appreciate the thinking out of the box. Bob spoke to Morgentaler very early on. He ran it by Dr Beltran just last week and she recommended he not do it. However when you get to this point there is not many options. My brother always said he would do it as a last resort. We will see. Your input is always valued. Thank you for taking the time to respond

Faith - I too am in my early 50’s (51) with a young family. If your brother needs to talk to someone in a similar place you can message me and we can figure out how to connect. I’m here to support my brothers!! Also if he is depressed- see a psychiatrist and get some antidepressants. I got sertraline it helped me a lot to come out of the fog of pre-death worry. I take 150 mg daily. Sertraline is also useful in fighting PC.

Faith1111 profile image
Faith1111 in reply to Chugach

You are so kind. It brings me to tears to see the kindness of people on this forum. My brother does read many of the posts so he will see this and I will also let him know you are available to talk. Very interesting about the antidepressant. Definitely something he should consider and I will talk to him about it. I’m sure it will make a huge difference. Thanks a million for your support

Hi Faith. I recommend anti-depressants. You may not think you're "down", but boy - doesn't the world seem a nicer/ happier place after taking them?

I recently started on Escitalopram (Lexapro). It's an SSRI anti-depressant that seems to also help with hot flushes. I feel much better now, from both aspects. I'm very glad that I accepted the help.

Yes, I also regularly see a Psych (I have Asperger's too).

Have you considered lu177 psma or Bipolar Androgen Therapy?

Faith1111 profile image
Faith1111 in reply to cesanon

Yes, both. His dr wants him to start chemo hoping to be able to get LU in the fall when it is approved. Bob doesn’t think he’ll make the fall and if he does, what kind of shape will he be in? Will his white cells be severely depleted? Will chemo help or hurt at this point? He is considering BAT right now and trying to get an appointment with Morgentaler for a consult. BAT is so risky. Standard of care, out of the box? We are talking about life and death decisions. His wife is begging him to do chemo. I can’t advise because I don’t have the answers. I can only pray.

MateoBeach profile image
MateoBeach in reply to Faith1111

With BAT trial at least he will feel better. And if he responds adversely with large rise in PSA he can drop it promptly and it will go back down mitigating downside risk. Just offering considerations.

Hi Faith1111, sorry to hear... Has Bob called Dr. Bob, he does low dose chemo and then high T . it maybe worth a phone consult to get his opinion. and how about Dr. Kwon he will zapp with radiation all visible mets that are reachable... that may help in combo with Ketruda -- helps the immuno "see the cancer".

Faith1111 profile image
Faith1111 in reply to George71

Thanks George, so many combinations of treatments now. We are keeping track of all the information provided so we can explore all options and discuss with Dr Beltran. Low dose chemo with high T ? Something I haven’t heard of. I will look into that. Appreciate your response.

Faith2+2

You are such a wonderful sister... You know I'm taking Keytruda for a lung melanoma at Sloan Kettering. Tell your dear brother that he should use every arrow in his doctor's quiver to get the "The Sheriff of Nottingham " a/k/a those dirty little bastard cancer cells....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 05/02/2021 10:41 PM DST - Orthodox Easter

Three weeks after starting Keytruda, my husband's PSA had dropped more than 50%. Four months after starting Keytruda, it hit undetectable and has remained so for almost 1.5 years. He will stop the now every six weeks infusions this fall. His disease was lymph nodes only. The Keytruda also eliminated a troublesome spot in his pancreas (as well as pituitary signaling to adrenal and thyroid glands - potentially deadly side effect).

Faith1111 profile image
Faith1111 in reply to GAdrummer

That is such wonderful news! You must be just elated that things have turned around for him. what mutations did he have? Was he MSI high or did he have a pole mutation?

GAdrummer profile image
GAdrummer in reply to Faith1111

He doesn't know. I cannot accompany him to the appointments due to Covid restrictions to ask questions. After two+ years of chemo and a clinical trial that knocked him to his knees with chemo brain fog on steroids, his memory is not to be trusted. Very sad thing for a university professor of biochemistry.

Hi Faith, My dad is currently on Keytruda and his Dr. told him not to panic after the first infusion because usually the PSA will rise. Which his did, but after the second infusion they dropped in half and have continued to drop in half since then. He is on is 5th round and gets scans next week to see if it is helping the spots on his bones. We are praying for good results! Praying the same for your brother!

Faith1111 profile image
Faith1111 in reply to Alimarie89

Alimarie, you can’t believe how relieved I am to read your post. I have been hoping that someone Who is currently on key Truda could remember those first one or two infusions and what the numbers were. The responses have been that the PSA dropped pretty much right away. His doctor even thought it should drop within the first three weeks. he almost went right to chemo instead of the second Keytruda infusion. But he made the decision to try it one more time. My gut feeling told me he was right to do that. I sure hope we get the response that your dad had. I will pray that your dad‘s scans come back with great results! My brother gets his PSA tested on Wednesday. We are holding our breath but are much more hopeful after reading your post. Thank you so much for that!

Faith1111 profile image
Faith1111 in reply to Alimarie89

Alimarie, did your dad have any certain mutations that are known to respond to key Truda?

Alimarie89 profile image
Alimarie89 in reply to Faith1111

Hi Faith,

Not that I know of but I am not 100% positive. I asked him and he said his Dr. never mentioned any mutations to him. He is in a trail with Keytuda.... he gets the infusions every three weeks and then takes a pill 2x a day.

Did your bother get his results back? Any improvement?

Faith1111 profile image
Faith1111 in reply to Alimarie89

Hi Alimarie, sorry I didn’t get right back to you. My brother had his PSA tested last Wednesday and it dropped five points from 139 to 134. However, we were so so happy because at least it came down instead of going up. It had only been one week since the PSA was tested so he will have it tested again I think next week. We are again holding our breath and praying it will begin to drop like your dad‘s is doing. On a good note his alkaline phosphatase has dropped 78 points which is a good sign. We are so hoping for Keytruda to work as he has run out of other options. Thank you so much for your prayers and your response. I will pray for your dad as well. It sounds like he’s doing good on the Keytruda. Keep me posted!

Thinking about your brother today and sending positive vibes your way...,

Faith1111 profile image
Faith1111 in reply to NWLiving

Thank you so much for being so kind. I really appreciate it

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