Checkmark 650: Has anyone been... - Advanced Prostate...

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Checkmark 650

huhnes profile image
9 Replies

Has anyone been following the Checkmate 650 trials? Does anyone know if more trials are going to open up for this?

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huhnes profile image
huhnes
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9 Replies
Tall_Allen profile image
Tall_Allen

There's a list of trials for PARP inhibitors here:

pcnrv.blogspot.com/2018/02/...

They don't include Ipi, but there is one with Keytruda.

huhnes profile image
huhnes in reply toTall_Allen

Thanks tall Allan!

Teddysdad profile image
Teddysdad

I am on a trial called Neptunes in the UK which I believe is the same trial, it certainly uses Ipi and Nivo.

huhnes profile image
huhnes in reply toTeddysdad

Thanks for sharing teddysdad! Can you share how it is going?

Teddysdad profile image
Teddysdad in reply tohuhnes

Hi yes, happy to share.

It is too early in the trial for anything conclusive but they do know that my immune system is working well as I have had a number of reactions including a rash which covered 40% of my body and led to me going to A&E.

I have also suffered headaches and fatigue which led to another trip to A&E.

Over the summer I had a fairly hard time with the side effects.

This was all while I was on both drugs, Nivolumab and Ipilimumab.

One of the major side effects was liver toxicity which saw my AST reading in my blood go to more than 7 times what it should be.

The upshot of this was a delays in treatment while this was brought under control with steroids.

It was decide that I would not have the 4th treatment of Nivolumab and Ipilimumab because of the risk of more liver problems so now I am just on monotherapy of Nivolumab.

I have had two treatment with the Nivo and have not had any problems so I am hoping that the following treatments will go well.

On the downside my PSA has continued to rise, it was at 10 before the trial started and has been as high as 23. There was a slight drop to 18 at my last appointment so I hope this might be the start of a downward trend but only time will tell.

When I ask about the PSA the answer I get back is that they are not sure how the PSA would respond/reflect what is going on so they are not worried at this point.

Overall it has been a roller-coaster for me with so much going on, at times I have been attending clinic weekly which was all quite tiring but now on the monotherapy I am only going every 4 weeks which is much easier.

I do write a blog with updates which can be found here prostatecancerandbeyond.me

I hope this helps.

j-o-h-n profile image
j-o-h-n in reply toTeddysdad

Great blog (jigsaw puzzles and all).... everyone here should view it...

BTW folks Teddy is a cute dog.

Go Luck, Good Health and Good Humor.

j-o-h-n Friday 11/23/2018 7:38 PM EST

Teddysdad profile image
Teddysdad in reply toj-o-h-n

Thank you, it helps me remember what has happened during treatments and clinic's.

j-o-h-n profile image
j-o-h-n in reply toTeddysdad

You think you can do mine when you have a chance?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/24/2018 11:43 AM EST

huhnes profile image
huhnes in reply toTeddysdad

Teddysdad...a nice blog. I hope it has a very happy ending!

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