JaiLee

Sorry about the itching, but I hope this is all you have as well. I've also done a coconut / lavender / plantain blend that helps. But basically benadryl, and lots of it. My one and only infusion was about 6 weeks ago and I stopped due to nerve pain, although my Dr. didn't see it as a big deal. I'm still suffering horrible side effects, chest pains, random joint pains, sweats, chills, fatigue, the itching, headaches, my AST / ALT spiked. No idea where my thyroid is at because they didn't check it the last time I went in 3wks ago. Dr. said it didn't matter because if it went out they had a pill to fix it 🙁 I still think they should be checking it every single time!

Hopefully you can get some relief, the side effects are no fun 🙁

First big hugs to you. Praying you get on the pembro arm of the trial. It is an emotional rollercoaster. I cried through my entire first infusion. (I don't suggest you do this. it isn't helpful) Just glad you are getting treated now. Focus on little things at a time. The bad thoughts sneak in all the time. When I have something I really want to do I just think "okay God, can you take this for 10min. because I really want to focus on working in the garden and not my health!" And there are times I can actually let it go and think about other things.

Whatever you do, don't give up. You have lots of things to fight for, fight hard! Put all that "anxiety" into determination!

You can try some warm olive oil compresses and massage. It will help the skin area, not sure how much for elasticity though. Kokum and shea butter might help too.

I started the first trial you mentioned, had 1 infusion of ipi, (3a) and had to quit because of nerve pain in my neck and right side of face. Just spread to left side of face and right arm. Severe headaches, sweating, chills. No idea if this is reversible, but my ast / alt also spiked and we decided not to continue. I really wish they had considered using a reasonable dose because I have read the lower doses are just as effective with significantly less side effects. So now I am left with wait and watch.

WOW! Fantastic news!! This is exciting, and so happy whatever worked, worked!
Definitely go out and celebrate 🙂 !!

Wonderful news! So very happy for you Jennifer!!

Work changed for me too. I had to take quite a bit of time off after my surgeries (last one was in March) and have been slowly getting back to things since. I was in an ipi / pembro trial, but have only had one infusion of ipi, and am having some nerve issues, so we are going to stop. I haven't been able to ride horses since Jan., which makes me very sad because it is something I truly love to do, but I still get to spend time with them. I ended up having a lot of lymphadema which is frustrating. I guess one thing that has helped me is focusing on little things at a time. Something that takes my mind off how Im feeling and the 'what ifs'. I can do a lot of my work from home fortunately, but my travel has been limited. So I have started to put things in place that will allow me to do more closer, rather than having to travel. This will also let me spend more time with family and friends. One of the most frustrating things is my inability to do quite as much physically as I once did. It seems like everytime I make progress, something sets me back. It is all very depressing sometimes.

I too seem less "bothered" by things. There are so many other important things in life, that the small stuff is seeming even more trivial. I just want to get past all the Dr.s and poking and tests and get on with as normal a life as I can.

Hang in there. This is a wonderful place for info, and updates, and venting too.