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Keytruda/pembrolizumab update (good news so far)

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Posted 7/28/2017 5:35 PM (GMT 0)
The cost is ridiculous. I'll give you some negatives first.

It will only do any good if 1) the cancer is producing really messed up proteins - i.e. the DNA in the cancer is way more mutated than normal in prostate cancer, and
2) there are active immune cells available (where the tumors are) that can attack cancer cells, once the checkpoint that stops them from doing so is blocked.

Also 3) the possible side effects are truly scary - see Nell79's latest post - though most don't get them. And I heard from a reliable source that one very very sick man took it off label, and died the day after the first infusion. Which may or may not be the reason why he died on that particular day, but it does make you think.

We live in northeastern US and the nominal cost is $10K-$12K per infusion, the normal interval is every 3 weeks. The hospital wants to charge us $48K per infusion just for the meds but we're hoping insurance will eventually cover it, as it is FDA approved for exactly the genetic signature that Dave has.

-- Carolyn

Post Edited (cspivak) : 7/28/2017 11:40:51 AM (GMT-6)

Posted 8/23/2017 10:05 PM (GMT 0)
How are things going with the Keytruda?
I have a few questions for you as I see clinical trials out there using Keytruda, but am wondering if your husband's regular oncologist is giving him his treatment or if you are having to travel somewhere for them. I see your insurance finally okayed it, which is great to hear and also tells me he may not be in a clinical trial! Has he had any side effects from it? How long does it take to get the infusion and are there other drugs given with the infusion like are given before chemo? Am not sure where we are headed, but this may be(?) in our near future. I'm not seeing anything else out there that my husband qualifies for, but maybe a clinical trial with keytruda. All the clinical trials seem to be in other places than where we live. I also saw where there was a maximum of 8 treatments of Keytruda, but that was in a clinical trial, so maybe two different things. Sometimes I feel so confused and wonder if I'm getting too far ahead of myself for my own good! We see the oncologist on Monday and since the gene testing probably won't be in yet, it will be too soon for answers! I guess after 16 years I should be a little bit more wait and see, but it could be 7 weeks without treatment by the time we get answers and we have never gone that long without something in all these years!
I am hoping and praying that you are still getting good results.
Posted 8/24/2017 1:30 AM (GMT 0)
Great news for you both thank you for sharing your excitement!
Posted 8/24/2017 3:26 PM (GMT 0)
Things are fine so far! Heading out for an infusion today. It's every three weeks, and yes, it's my husband's regular medical oncologist (though I've stopped thinking of him as at all regular, since he ordered that crucial genetic test on the biopsy).

No, as you surmised, not part of a clinical trial - because of the MSI-H genetic marker in the cancer, this is FDA approved.

Dave feels better than he has in quite a while (though still tends to fall asleep randomly). But his energy level is definitely up. No side effects so far (fingers crossed).

Thanks for the good wishes. I really hope to hear of others who get good results from this too, even if the rarity of that genetic marker means I'll probably have to wait a while. I'm also hoping that those who do get the genetic test and turn up negative post too, so everyone gets a feeling for how relevant Dave's result might be (or might not be).

-- Carolyn
Posted 8/24/2017 4:56 PM (GMT 0)
I'm so excited for you!
Is the infusion given in the doctor's office, treatment center or hospital?
I can't wait to hear that all is going well!
Have a great day!!!
Posted 8/24/2017 7:57 PM (GMT 0)
Fox Chase Cancer Center, which is a hospital.

Scans scheduled for mid - September- will post w/results.
Posted 9/22/2017 3:04 AM (GMT 0)
Still all good so far on the Keytruda front. Dave's PSA continues undetectable and his first post-Keytruda scan results just came back. Bone scan showed stable disease - (doctor said that bones would take a long time to heal). Affected neck lymph node completely resolved in CT scan. Other lymph nodes also all resolved except for one, which has been reduced by half.

And, no side effects. Dave looks pretty much like his old self, though of course still fatigued from and annoyed by the (ongoing) ADT.

I am so happy and grateful. Wishing everybody could have results this good.

--Carolyn
Posted 9/22/2017 5:58 AM (GMT 0)
This is just wonderful!
Posted 9/22/2017 9:06 AM (GMT 0)
Excellent news, Carolyn. So thrilled for both of you!
Posted 9/23/2017 1:22 AM (GMT 0)
Great news, and I'm encouraged about the future possibilities for me.
Larry E.
Posted 9/27/2017 5:24 AM (GMT 0)
Such great news! I had been stopping by to see if you checked in with the latest and I am so happy for you! Here's to many more great reports! Hopefully many more men will find this drug to be helpful for them.
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