BrianP

Happy New Year Celeste!

I am so happy to hear that you are still getting after it despite so many challenges that have come your way. I wanted to say that my oncologist Dr. Tawbi at MDA is also very positive on the nivo-lag3 combo. He’s been very involved with that combo and thinks it will get FDA approval in 2 to 3 months. Nice to know there’s another good option if needed. Best to you and your’s.

Brian

https://www.esmo.org/oncology-news/dual-inhibition-of-lag-3-and-pd-1-in-patients-with-previously-untreated-metastatic-or-unresectable-melanoma

Definitely celebratory worthy.  Congrats on the positive trend Tim!  Hopefully a sign of good things to come.

Thanks for the posts Tim. The details you share will certainly help others that come behind you. I look forward to hearing your great scan reports in the near future.

I’ll 2nd Celeste’s comments on Dr Weber. Straight shooter and great at breaking it down so it all makes sense. I also like the fact he is very data driven in his recommendations. He’ll also tell you if he doesn’t know the answer. I was never treated by him but got a consultation about 3 different times when I was a critical junctures in my treatment. Good luck.

Thanks for posting Nicky and congrats. I can so relate to those 3am log in sessions when I couldn’t sleep because my mind was going a thousand miles an hour. Prayers for all those currently going through that grind.

Any resolution?

What Ed said!  Myself as well as several others here have had this side effect.  For some it starts mild and slowly gets worse and for others it comes on fast like you got hit by a 2×4.  Mine had gotten really bad when it was finally diagnosed and within about an hour or two of taking the prednisone the pain was gone.  Not 100% saying this is what you have but I highly recommend you call your oncologist office again and tell them you suspect you have hypophysitis.  I’m not optimistic an emergency room is going to be familiar with this side effect if that is indeed what you have.

Brian

Trent,
Congrats on the success of treatment so far. Just wanted to share my story in case it gives you a little hope. I participated in a Nivo-Ipi sequential trial from 2013 to 2015. I started out with about a 4 centimeter tumor and a 3 centimeter tumor. Both shrunk pretty quickly nearly 50% and have been stable ever since. In 2016 I had another recurrence of two more tumors close to the same size and participated in a ACT trial. Those tumor shrunk about 50% and have been stable ever since. It is possible to have a long term stability prognosis. I think most if not all of us go into our scans praying and hoping for that NED result and may even feel a little bit of disappointment with a stable result. One of the best lines I heard which really help me put it in perspective was, “In this game a tie is a win.” I got that from a pretty well know patient named T.J. Sharp. Best of luck with the upcoming treatments. Who is your Dr. at MDA. I’ve been a patient of Dr. Tawbi’s since 2016.
Brian

Hey Mike,
Thank you for your example to us all. I don’t log on as much as I used to but for the last year anytime I do log on I always looked for your latest status. Been routing for you a long time now. Sorry your journey has been such a tough one but you sure have handled it with class. There have been a handful of members on here that I will always remember and you are definitely one of them. Hope you are at peace and surrounded by loved ones. I will continue to pray for you and your family.
Brian

Hey Studiodad,

Sorry you are not feeling up to your normal self. Exercise does sound like a good option. I would definitely talk to your oncologist and primary care physician and describe your symptoms as accurately as possible. These powerful drugs have been known to alter one’s endocrine system which really can throw you into a tailspin. It may be worth asking your oncologist next time you are in for lab work to ask for some additional endocrine work. Maybe they are already being done but it would be worth asking about.

Great info. Always love me some straight shooting Dr. Weber wisdom.

Thank you for posting Celeste. Happy 1oth April. Love the pics.
Brian

Hey Adam,

Sorry you are facing this challenge. We’ve had similar journey’s. In 2006 I had a small mole removed from my upper left chest that turned out to be melanoma. It was .91 mm so not too great a risk for recurrence but in 2011 I noticed swelling in my left armpit. Melanoma had spread to the lymph nodes in my left armpit. Had a complete lymph node dissection. Couple years later found small lesions in my small intestines. I’ve participated in two trials. First was a 2 year combo trial of Opdivo and Yervoy from 2013 to 2015. The second was an adoptive cell therapy trial in late 2016. That was my last treatment and fortunately still going strong.
Piggy backing on what Celeste said about seeking out a melanoma specialist. Two of the best in the world are in NY. Dr. Wolchok at MSK and Dr. Webber at NYU. If you are up for second opinions and going into the city I would highly encourage you to seek out these two individuals.
Best of luck to you.
Brian

That’s a very well done article. I’ve still haven’t watched the Documentary on him. One of these days I will. Thanks for the post.

Brian

Thanks for the update Mike. Best of luck with the new trial. Imagine it will feel great physically and mentally to get that big sucker gone!