Anyone having success with Ketruda an... - Advanced Prostate...

Advanced Prostate Cancer

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Anyone having success with Ketruda and how are side effects?

Jackpine profile image
27 Replies

After 9 rounds of Jevtana followed radiation to a lymph node and my right femur it’s time for a new approach. After we finished chemo we did another genetic test that looks like Keytruda is and option especially since my overall tumor burden was 34%.

Any input would be helpful.

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Jackpine profile image
Jackpine
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27 Replies

I believe that another criteria needed to benefit from Keytruda, in addition to having a high tumor burden, is being identified as having MSI.

I had been told that since I am MSS and have a low tumor burden, Keytruda would not be an effective treatment option for me.

Jackpine profile image
Jackpine in reply to HopingForTheBest1

Thank you this reply. I’ve not seen my report yet so my meeting on Friday will answer some question

Jackpine profile image
Jackpine

I’m waiting to see my report as it has not been released to me yet. I was told none of my markers had any FDA approval yet.

Chugach profile image
Chugach

My PSA went from 86 to undetectable after two infusions of Keytruda and stayed undetectable for over a year. Over the last 8 months mine has slowly moved from <0.01 to 0.15; but I feel great. It was my Hail Mary, I’d be dead without it. I got lucky as I was MSI-high. There are not really any side effects worth mentioning other it can cook your thyroid (as it did to mine) so now I take another pill daily as a thyroid hormone supplement. If you can get it … DO IT!!!! Without hesitation

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Chugach

How far apart were your 2 infusions? Can you get more?

Chugach profile image
Chugach in reply to HopingForTheBest1

Currently I get a 400 mg infusion every 6 weeks. #18 was last week. I plan to ride this train as long as I can. Starting out they were 200 mg infusions every 3 weeks. So it took me 6 weeks from starting to get to an undetectable PSA.

AlanMeyer profile image
AlanMeyer in reply to Chugach

That's fabulous Chugach. I'm always encouraged to hear stories like that. If we can't develop a one size fits all cure for prostate cancer in the foreseeable future, maybe we can still develop a couple of dozen different treatments with most men getting big benefits from at least a few of them.

Best of luck on your continuing treatment.

Alan

Schwah profile image
Schwah in reply to Chugach

How does one determine their level of MSI? Is it a genetic test?

Schwah

Chugach profile image
Chugach in reply to Schwah

Yes it is a genetic test- I’ve done it twice through Foundation One. The second time found this marker (not tested for in original test). I used their ‘Liquid Biopsy’ for test 2. (aka tube of blood for a sample). It’s unfortunately not very common to have the right markers, but there are several trials underway what are working to find a way for this to have broader application- stay strong

tango65 profile image
tango65

Some Info about Keytruda and FDA approval criteria:

accessdata.fda.gov/drugsatf...

Peterd110 profile image
Peterd110

I thought you were going to try erleada?

Jackpine profile image
Jackpine in reply to Peterd110

You are correct that I’ve started Erleada but they will no see if I can try Ketruda. I’ve gone through mast standard treatments.

I think now that they have the gene mutation study they are looking at Keytruda. I’m not sure if they will keep me on Erleada or stop that and go for Keytruda.

Chugach profile image
Chugach in reply to Jackpine

Stay strong Jackpine!!!!

Vindog29 profile image
Vindog29

When I see these posts and genetic testing pointing to KEYTRUDA my heart smiles because it was a miracle for my husband. When he was diagnosed with stage 4 prostate cancer over 3yrs ago Memorial Sloan Kettering Dr Michael Morris gave him 5yr survival. Chemo,Zytiga didn't work, then somatic testing on tumor for 2nd time showed MSH mutation. 2 doses of Keytruda, no side effects although his Ast and Alt liver counts went high so Keytruda was stopped. It was enough to put his PSA into undetectable as well as shrinking ALL his METS and Dr Morris saying at last scans which were being done every 3 months he can now go 1yr. My husband feels great, it truly was a lifesaver. So now you know why my heart smiled with your post, I pray you have a similar success story

in reply to Vindog29

Thanks for sharing your guy’s wonderful results

Jackpine profile image
Jackpine in reply to Vindog29

Thank you for letting me know about your husbands success with KETRUDA.

After dealing with this disease since 2014 I’ve not attained a non-detectable PSA reading. I’m hoping I qualify for Ketruda and look forward to positive results.

Vindog29 profile image
Vindog29 in reply to Jackpine

It's been undetectable for over 2yrs...I am praying you qualify for Keytruda and you have the same results. Pls message me if I can ever be of help..love to be your cheerleader

Jackpine profile image
Jackpine in reply to Vindog29

Thanks Vindog and I’ll post on Friday if I’m able to move forward with Keytruda.

Vindog29 profile image
Vindog29 in reply to Jackpine

I'm getting my cheerleader pom poms ready!!!

JC531 profile image
JC531

Last March, the cancer invaded my fathers liver. He has been on Keytruda and Cabozantinib for the past 6 months and it has decreased his PSA and his AST/ALT liver numbers. Although, the numbers look good, he a has swelling in his legs, groin area and now stomach/liver area, including blisters on his feet. His oncologist has told him to to stop the Cabo, but the swelling has not retreated.

winkoliu profile image
winkoliu

KEYTRUDA can cause your immune system to attack normal organs and tissues in any area of your body and can affect the way they work. These problems can sometimes become severe or life-threatening and can lead to death.

Chugach profile image
Chugach in reply to winkoliu

It’s like any of these cancer drugs- there is a long scary list of potential side effects. It is why they monitor closely as you start out with 3-week cycles and lower dosing levels. But as we all know in this shitty situation, sometimes you just have to, do your homework, get second, third opinions, make a decision, and then roll the dice. Sometimes you win

Jackpine profile image
Jackpine in reply to Chugach

Chugach,

If given the choice I’m sure I’ll give Keyteuda a try. Most of my treatments fail after several months. The side effects can be worrisome but no worse than some of the other treatments

Chugach profile image
Chugach in reply to Jackpine

Good luck and stay strong!!!

Explorer08 profile image
Explorer08

Jackpine, you asked about side effects of Keytruda. An acquaintance of mine started on Keytruda for melanoma a few months ago. It resulted in him getting myasthenia gravis, a rare but possible side effect of Keytruda. Regretfully, he died from the myasthenia gravis. Just something to be aware of.

GAdrummer profile image
GAdrummer

In two days we'll see the MO for the first time in a year as we celebrate second anniversary (and the end of the "clinical trial"). Keytruda was the first treatment to make his PSA undetectable. My husband had after 6 months of treatment an adrenal crisis identified at the next scheduled appointment. That postponed treatment until the correct doses of hydrocortisone and levothyroxin were determined. Now he wears a medical alert bracelet and the emergency hydrocortisone kit stays on the dining room table. His appetite has improved and the weight loss from two years of chemo has been reversed. He had stopped writing his novels the second year of chemo, but he feels so much better on Keytruda that he is back to cranking them out. But extensive dental work had to be carefully managed because of the Prolia he is on.

Vindog29 profile image
Vindog29 in reply to GAdrummer

After 2 doses of Keytruda and over 2 yrs later my husband feels great, psa still undetectable. I am so happy to read your husband too. I'd love to read his novels one day since books are my passion.

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