Who here is on Keytruda or other checkpoint inhibitor or some kind of immunotherapy?

[Fuzzman77]

Hello everyone. I have been on Keytruda for about 43 infusions now first done every three weeks but every six weeks as of late last year. I am MSI-High with a partial MHL-1 defect. It has definitely helped me but am on a bunch of other stuff including dendritic cell vaccine immunotherapy. My onco doesn’t want to rock the boat since I am NED with a PSA of <.01 for the time being.

I’ve been curious for awhile of how many of us are on some type of PD-L1 check point inhibitors or other type of immunotherapy. If you’re on an immunotherapy trial how are thing going for you? Little by little it seems there is more immunotherapy being tried on prostate cancer and since SOC seems to have an end. I am hopeful that at least some of us end up responding well to immunotherapy like I have now for about four years. Hoping the same for anyone else that has been told the same as me when I started. I had Sloan Kettering, Cleveland Clinic and Rutgers all tell me they were sorry but we have nothing more to offer you. At that time I had 30 tumors all over the place in my lymph nodes and bones so if you are where I was it’s always a gift of hope. Peace to all of you on the same journey and all of the wonderful caretakers.

Chris

[Shooter1]

Fully successful after the end...great.. keep it up and keep us informed.

[Tall_Allen]

It's a great treatment for MSI-hi/dMMR - but it's very rare in PC patients.

[Fuzzman77 in reply to Tall_Allen]

I just got lucky then to say the least.

[Tall_Allen in reply to Fuzzman77]

Well, lucky that Keytruda works so well for it. Unlucky, in that it probably had a lot to do with your getting cancer in the first place.

[Fuzzman77 in reply to Tall_Allen]

You may very well be right Allen since I had metastatic to the bone kidney cancer in 1996 that I was given TVAX T-cell vaccines for. I was 36 then and the tumor was 5.1 pounds when removed. I also had one polyp that had dysplasia a few years ago that they listed as stage 0 cancer which I had never heard of before. Time for another colonoscopy.

[2zuzu612]

Dad is on Durvalumab and a trial drug. Just three doses in to the clinical trial.

[HopingForTheBest1]

I love hearing great news like yours.. Unfortunately, for me being MSS and having a low tumor burden, Keytruda is not a viable option. Wishing you continued success. 👍

[Hotrod65]

50 infusions of Pembrilizimab/Keytruda for scNEPC /MPC4.. over past 5 yrs, complete Durable Clinical Remission NED, presently 2 maintenance doses yearly with 4 month clinic visits..I am MSS, but a hypermutated Tumor Burden that after Genomic Sequencing thru Foundation Medicine CDx Panel matched me to trial with Immunotherapy checkpoint inhibitors Blockade...I'm 6.5 yrs on from a 3 month terminal diagnosis..this has saved my life.

[anit_t in reply to Hotrod65]

Great to hear! What was your tumor mutational burden value?

[Hotrod65 in reply to anit_t]

232 nu.

[Fuzzman77 in reply to anit_t]

I honestly don’t know. I was MSI-High with a partial MHL-1 mutation. I will ask my onco next time.

[Alexcohen]

Best wishes to you. As I was treated with radiation (and surgery) for a previous Lynch Syndrome cancer (rectal cancer at age 24) and can not have effective surgery or EBRT for prostate cancer with lymph node mets diagnosed at age 52, I convinced my oncologist to provide keytruda as initial treatment for 18 months (including 3 treatments of ippi nivo) as I'm msi-intermediate with intermediate mutational burden. This was paired for six months (ending this past September) with ADT (firmagon) and brachytherapy also in September. I have been in remission since then with undetectable PSA (8+ months) and undergoing no treatment with testosterone recovering strongly.

[Fuzzman77 in reply to Alexcohen]

That is what I was hoping to hear!!! Very happy for you Alex.

[anit_t in reply to Alexcohen]

Great!! What’s an intermediate mutational burden value?

[Alexcohen in reply to anit_t]

Not In the high range and not in the low range

[anit_t in reply to Alexcohen]

Any specific number?

[GAdrummer]

Husband started Keytruda after 9 years of standard treatments and one clinical trial. PSA dropped to undetectable at four months. At six months he was floored by a rare side effect - adrenal insufficiency and hypothyroidism. He had to take a break while replacement medication levels were determined. Covid 19 changed the infusion schedule from every 3 weeks to every 6 weeks. We are celebrating 27 months undetectable.

[Hotrod65 in reply to GAdrummer]

I have Adrenal Insufficiency as well controlled by 5.mg prednisone x1 daily...off treatment only 2 maintenance dosages of Keytruda x2 yearly now at 6 month intervals

[Fuzzman77 in reply to GAdrummer]

That is great!!! Congratulations.

[ctarleton]

I've recently been on Xtandi while getting to 7 years of very metastatic prostate cancer. Did not have the MSI-high marker that would typically lead to Keytruda; however, about 1 1/2 years ago I also developed a rare metastatic melanoma that was spreading despite two initial site surgeries.

I got 14 rounds of Keytruda tried as an option for the melanoma. (Effectively, I was in an individual, anecdotal situation of some current clinical trials now examining a Xtandi/Keytruda combo in the prostate cancer context.) Stopped the Keytruda a couple of months ago due to radiographic progression of probable melanoma mets on PET/CT scan. While on Keytruda my prostate cancer PSA readings and Alk Phos kept trending up. I've had recent PSAs in the 20-40 range.

I'm at a bit of a crossroads now, with a less and less effective Xtandi, spreading melanoma mets & no currently active treatment, and some markers like ALT/AST that have recently spiked to 10-11 x normal upper limits. No significant symptoms to report. Various scans & tests are underway. I've started prednisone in case it's a delayed reaction auto-immune hepatitis from the Keytruda. Another option of combo Opdivo/Yervoy for the melanoma has been put in indefinite hold until any liver issues may be resolved. Some labs are being followed-up to check if some long-ago unknown Hepatitis-C exposure might have activated. Etc. , etc.

My oncologist and other specialists and I are "still kicking the flaming can down the road".

[Chugach]

Hey Fuzzman - I’m MSI-h and have been on Keytruda for over a year now with undetectable PSA

[Fuzzman77 in reply to Chugach]

That’s great Mr. Alaska. I am hoping I stay undetectable for a year or two after I stop Keytruda and everything else this fall.

[Chugach in reply to Fuzzman77]

Keep me posted- there are not too many of us on this forum

[j-o-h-n]

Raises Hand! I'm being treated with Keytruda for a lung Melanoma and so far it's working.

Good Luck, Good Health and Good Humor

j-o-h-n Friday 02/12/2021 7:16 PM EST - Happy Chinese New Year (year of the flu)

[Hidden in reply to j-o-h-n]

Love hearing that !

[j-o-h-n in reply to Hidden]

"Your wish is my command"

Raises Hand! I'm being treated with Keytruda for a lung Melanoma and so far it's working.

Good Luck, Good Health and Good Humor

j-o-h-n Friday 02/12/2021 8:26 PM EST - Happy Chinese New Year (year of the flu)

[Fuzzman77 in reply to j-o-h-n]

That’s great John!! You mean to tell me you’re dealing with two cancers at once?

[j-o-h-n in reply to Fuzzman77]

Yep.... Two for the price of double anxiety.....

Good Luck, Good Health and Good Humor

j-o-h-n Friday 02/12/2021 11:15 PM EST - Happy Chinese New Year (year of the flu)

[Fuzzman77 in reply to j-o-h-n]

That just ain’t right. Hope the Keytruda just happens to attack the prostate cancer too. I’ve had three cancers, but prefer them one at a time. Only kidney was stage 4 beside the prostate cancer 25 years ago. 25 years ago next Sunday they removed a 5.1 pound kidney tumor from me. Insane.

[j-o-h-n in reply to Fuzzman77]

All's fair in love and war....and we're all in the midst of a f-n battle. I asked my Pca MO and my Melanoma MO about any side benefits of Keytruda on my Pca.... and both responded....NO... So I'll keep fighting with humor. A 5.1 pound kidney tumor is like walking around with an old Manhattan telephone directory attached to your body, holy chit. Well Thank goodness it's been 25 years ago. Good Show!!!

Good Luck, Good Health and Good Humor

j-o-h-n Saturday 02/13/2021 12:05 PM EST

[Fuzzman77 in reply to j-o-h-n]

The weirdest thing was my surgeon brought me a photo a couple of days later in my room of my kidney tumor that had been sliced in half. I think he was happy about the work he’d done. He said it was about the 3rd or 4th most difficult surgery he’d ever performed. It had tentacles all over to my liver etc feeding it and he got them all. He also removed about a third of my vena cava because the tumor grew up my renal vein into my heart. Pretty insane. Talk about being in the right place at the right time where they were looking for patients with kidney cancer for what became known as TVAX. I was number 2.

[j-o-h-n in reply to Fuzzman77]

Wow....Thank goodness I already had my breakfast..... It would be like watching a horror movie.... Good to be at the right place/right time. Something to discuss with ladies when your 96 years old sitting in the day room of a nursing home and the tv is blaring and everyone else has fallen asleep. Notice I said ladies cause women outlive us.....The saying goes "why do husbands die before their wives? Cause they want to"...Take care and if you have more horrid stories like your kidney cancer, please keep them to yourself.... 😩 Oiiiiiiiiiiiiii

Good Luck, Good Health and Good Humor

j-o-h-n Saturday 02/13/2021 12:52 PM EST

[Fuzzman77 in reply to j-o-h-n]

Kept the photo on my refrigerator for a couple of years so it reminded me to eat better. Kind of morbid, huh John? Oh ya, I can’t keep anything to myself! Good luck and horror stories for humor!

[Boywonder56 in reply to j-o-h-n]

Ahhhh so....

[j-o-h-n in reply to Boywonder56]

Boy oh Boy It is a wonder isn't it?....

Good Luck, Good Health and Good Humor

j-o-h-n Friday 02/12/2021 11:34 PM EST - Happy Chinese New Year (year of the flu)

[Boywonder56 in reply to j-o-h-n]

yeah....the nickname waz given to me at 12 yrs old as i could tear a engine apart and put it back together ...and it ran...nowit boy its a wonder your still alive...well ...lupron and 12k worth of erleada ..here i am...been here 3+ yrs john didnt know that you were fighting such a battle.....the meek shall inherit the earth...or whats left of it....thanks for your humor j.o.h.n...helps more than you know...bw

[j-o-h-n in reply to Boywonder56]

12? I did it at 11........but my mother complained about all those plastic pieces all over the living room floor.... Cancer, It's a battle we're all fighting.... just like marriage...... I realy appreciate your remark about humor. We all need it....Take care and if I blow my engine I know where to go.....

Good Luck, Good Health and Good Humor

j-o-h-n Saturday 02/13/2021 11:18 AM EST

[Vindog29]

My husband stage 4 ,chemo,zytiga failed,biopsy MSKCC found he is MSH2 received 2 treatments of Keytruda over 2 yrs ago PSA undetectable,tumors shrunk,feels great

[Hidden]

I did the Lu177 about 2 years ago kept my PSA at a very reasonable number. It is now starting to climb rapidly. I am in the process of seeing if I qualify for Keytruda but getting a lot of push back from my oncologist. I would welcome any suggestions on convincing him it worth checking into to. Also how many Lu177 treatments did you take? Thank you for sharing.

Tom

[Fuzzman77 in reply to Hidden]

Hi Tom. I haven’t done Lu177. As far as Keytruda genetic testing of your path slides may show a mutation or if you just happen to be MSI-High. And it can also show what you may respond to. Hotrod knows more than anyone on here most likely and did 50 infusions of Keytruda. This site has some very knowledgeable people. There’s also clinicaltrials.gov that shows many open trials for men with prostate cancer.