Keynote 199 trial

User

Posted 25 Apr 2018 at 20:24

I apologise for my long post in advance.

I have posted previously regarding my husband who has advanced prostate cancer. We are 16 days post our first pembrolizumab infusion. On his latest scan's which were carried out for the trial, it has shown Mets too lymph nodes in groin, abdomen and chest. Mets to spine, ribs, right arm, left eye socket and left side of pelvis. This is the same as diagnosis in 2015. Last November he had his femor, hip and part of his pelvis on the right side replaced due too Mets progression. An additional MRI of his spine has revealed MSCC on L3 which was causing great pain for him. 14 days post infusion the L3 pain became unbearable, after visiting a&e as advised by The Christie he is now on oramorph and diazepam plus his pregagablin. His oncologist has suggested a flare, he has also got lymphedema in his groin and genitals. We are back too see his oncologist friday in preparation for his 2nd infusion. Has anyone had any experience of the keynote 199 trial.

Thank you for reading my post.

User

Posted 25 Apr 2018 at 22:29

Hi Nicola,

No need to apologize. Sorry for Kieron and your situation which I hope improves with the treatment.

I cannot give any advice as it is beyond my experience, but this should bump you to the top.

User

Posted 26 Apr 2018 at 07:38

Good morning

Thank you for your kind words. We are hoping this is part of the treatment rather than a adverse reaction to the treatment.

Regards Nicola

User

Posted 26 Apr 2018 at 18:53

I can't think of anyone on here that has been on the Pembrolizumab trial so we will all be watching your posts with interest and hoping that K does well. As you are finding, very young men with PCa do seem to have a much more aggressive and determined variety of the disease.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Apr 2018 at 19:20

Hi Lyn

Thank you for your post. I have spoken to the PC UK specialist nurse's today and there has been reported tumor flare in patients on the keynote 199 trial to begin with. So we are hoping this is what kieron is experiencing at the minute. We are back at The Christie in the morning so we will know more tomorrow.

Nicola

User

Posted 27 Apr 2018 at 21:44

An update on keynote 199

Well today has been a good day, kieron's blood results were perfect and his oncologist is happy with kieron. So 2nd infusion on Monday, his oncologist has also referred him for radiotherapy on his L3 vertebrae. We asked if this could be a tumor flare and his oncologist said it is a possibility as this has all happened since the infusion but she can't be certain. We are hoping the treatment has stimulated his immune system and this has been a step back before the leap forward in the therapy starting to work.

Feeling very hopeful. Nicola

User

Posted 12 Jun 2018 at 11:38

Good luck with everything. I am also on a trial at the Marsden, too soon to say yet if it’s working but feeling fine. Best wishes to you both.

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