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
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Fuzzman77
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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.
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. 👍
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.
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.
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.
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
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".
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.
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!!!
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.
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
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!
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
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.....
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
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.
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.
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End of Immunotherapy trial - what next?
A listening ear, anyone？
Looking for US for my next fight, need doc/institute references you bank on and notes on insurance coverage 
online support group for 40-ish year olds?
Lu 177 also failed after 6 Cycles. 16 rounds of Chemo (10 Docxetexal and 6 Jevtana) previously failed. What could be next?
