Four years & 70 anti-PD-1 infusions on clinical trial

Hey all - just finished my 70th anti-PD-1 infusion over 4 years on the KEYNOTE-002 trial; although I am technically a partial responder with stable disease, I consider myself cured (there are two remaining spots that show on CT but not on PET scans). I will remain on the trial for a few more months before deciding to discontinue the medication (but remaining on the trial for scans and blood draws). Anyone who is looking for some immunotherapy advice, reach out!

T.J.

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  • I'm considering (if eligible) a trial combining Radium 223 and Atezolizumab. I love to hear what you think and what your trial experience is like...what was your condition before the trial etc.

  • Wrando - apologies for delay in responding. My trial experience was... varied. A LOT good. Some challenging. There were a few times that I needed to be frank and assertive with my physicians, and make the best decision for me (which included switching hospitals between trials b/c the 2nd hospital had the anti-PD-1 drug I wanted). There were also some hurdles getting the trial started, which is frustrating when you are waiting for medicine. But they were absolutely the right decisions for me, even if the first trial, technically, didn't work (i was considered a non-responder, although there was some evidence the immunotherapies were doing *somethign* - just not enough)

    I was in pretty bad shape before the first trial, and even worse before the second one. Luckily both trials were immunotherapy based, and I rebounded well from each procedure and infusion.

    The anti-PD-L1 drugs are showing good promise in trial, and it seems have similar side effects to the anti-PD-1 drugs. If you have specific questions, feel free to ask!

    T.J.

  • This is so inspiring and awesome to hear! Wishing you continued health and wellness!!

  • Is your trial for melanoma or PC? Who is doing the trial. Your news sounds great!

    Craig

  • Craig - sorry for the delay, was traveling all last week. I had (well, technically, still have, at least clinically) stage IV melanoma. I was extremely fortunate to get on two different immunotherapy trials. It is the KEYNOTE-002 trial for Merck's pebrolizumab (Keytruda), so very early on in the immunotherapy wave.

  • Was this for PD?

  • Catlou - yes, see above. Merck's pembrolizumab (Keytruda)

  • Good luck. How do i get on it?

  • Depends on you or diagnosis. for melanoma it is an approved first-line treatment (i.e. You don't need to do a "standard of care" prior to this). It is also approved for a few other cancer types ("indications") with various levels of prerequisite treatments; AND it is in trial for pretty much every cancer type under the sun. If you are willing to share more information, we may be able to help guide you to someone who can Better get you treatment and trial information; if not (which is completely fine and up to you) then the place I would start would be an advocacy group for your or particular cancer type - the MIF was a great resource for me to find my melanoma trial, and there are also cancer-specific groups that you can find online that will help you navigate the confusion of finding a trial. Additionally, CISCRP has a clinical trial finder on their website that is extremely useful: ciscrp.org/our-programs/sea...

    Hope this helps. Stay strong!

    T.J.

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