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Torn on 2nd opinion, what would you do?

Torn on 2nd opinion, what would you do?

Posted By
guynamedbilly
6/13/2019 6:37pm
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Replies: 5

I've reached the first fork in the road that I am having trouble deciding on. I have possibly six lesions in my lungs and possibly two in my liver, along with others that have recurred in my skin.

My primary Oncologist has recommended stopping immunotherapy currently and not undergoing radiation for tumors in my lungs and instead signing up for a trial for MGD009. I think one of the reasons they recommend this route is because it's an easier treatment path than radiation and all, and it's a promising drug also. There's only a possibility that I could get on this trial anytime soon. I don't know the odds, but it's not guaranteed.

The 2nd opinion is to continue immunotherapy and add radiation to the two largest, riskiest lesions in my lungs. Also, start another round of IPI/Nivo. IPI/Nivo did cause the lesions in my liver and one that was near my kidney (that we are unsure of atm) to shrink, but the ones in my lungs still grew. I have not had radiation treatment internally yet. Best hope is an abscopal effect response will trigger an immune response in the other lesions. This is all while waiting on my TIL therapy cells to hopefully mature properly. The big wrinkle to me is I showed three potential trials from my primary Onc to the 2nd opinion and the one they picked out and liked best was the MGD009 trial.

Hey Billy,

I don't have any amazing advice. Sounds like you and your docs are doing due diligence and thinking things through. I don't know a lot about MGD009. I don't have any of their Phase 1 results. Not saying they aren't out there...but I don't know them. I do know mid last year the trial was held because of some problems folks experienced with their liver function...but was restarted a bit later. So, if you take that tact, I would certainly ask what my docs knew about that and make sure they keep a close watch on those lab values. I don't know how or if being treated for actual liver mets would potentially impact that. Another thing I would ask. Beyond that...if I felt good about what they told me about the trial...I guess I'd go for it. I mean that's what I did with my Nivo trial back in the day when we didn't know if it would work or if we would grow three heads. You can always resort to a repeat of the ipi/nivo if you need to. Plus TIL may still be an option. Hang in there. Yours, celeste

Thanks for the input. I decided that I'm going to try the radiation and immunotherapy route and hopefully the trial works well and I can get on it later if needed. I figured if I do the radiation now and I still need to do further treatment that at least I might not have treated these two lesions to deal with. But if I waited a few weeks for the trial, it's uncertain if there would even be any positive effect.

If I could for sure get started on the trial, I would have done that instead, but there's no guarantee that a spot will even be available and I wouldn't be able to know for a few weeks. Ah well.

Good for you!! Making a decision is sometimes the hardest part. You are the only person who knows how you feel, what the doctors have told you, time frames and logistics involved....etc! So, go for it and don't look back!! I think I've shared this with you...and if not....certainly plenty of other times on this forum...there is literally tons of research that clearly demonstrates that the combined effect of radiation with immunotherapy is much better that either alone!! Here is just a half ton of reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radi... Wishing you my very best. Celeste

That is a tough decision. I'd tell you which way I'd go, but I'm so ignorant that it wouldn't be worth your time reading (I did google that clinical trial though). I hope you feel good about whichever way you go, knowing that you made the best decision for you based on what information you had available. That's about all any of us can do.

Yea you're right. If I had 10 years or so to become a melanoma research scientist I might have a better guess at which to choose. I don't feel good about my choice, but I guess I don't feel bad about it either because I think it seems most right for me at the moment.