Immunotherapy

[kellyOd]

Ryan is finally switching medications on Tuesday.. the anxiety is never ending. He keeps telling me I have to let it go and just be positive. It’s hard.. I am doing my best to verbalize that everything can and will be fine; but I’m really scared. The yervoy opdivo combo has knocked a lot of people on their ass (excuse my language).. and some gnarly side effects came with it. Some couldn’t finish the 4 doses where it was combined. Afraid that if we let the guard down medication wise that we could go through a “storm” again.. just praying. Doing a lot of praying.. everything could go great! I have to try and stay positive.. just preparing ya know? I don’t know what else to do. I hope everyone is well.. I know there are some on here, that I haven’t necessarily commented on.. that are going through some tough stuff. it’s just cause I don’t have any experience 😔 I feel for everyone and pray for you all everyday. ❤️ love you all xox

[SGHSweethearts]

Kelly, I know all the anxiety you are going through right now. I went through the exact same thing. Mark only could take 2 of the 4 Yervoy treatments. The Yervoy is a tough medication, I haven’t heard of anyone who made it through all 4, but Mark has continued on with the Opdivo alone, and is still doing good. I’m praying right there with you Kelly. EnJOY every day.

Michele

[kellyOd in reply to SGHSweethearts]

Again, marks story gives me so much hope that everything will work itself out.. Ryan got the yervoy the first time he got immunotherapy years ago, and tolerated it perfectly fine with no side effects. So I’m hoping it’s the same this time. I know it may not be; but hoping.. first infusion is tomorrow! I will keep you updated for sure. When did Mark start getting side effects after his first infusion?

[Vflowers]

My son tolerated the first round of opdivo yervoy ok. The 2nd dose , he started having issues with diahrea. He made it to 3 treatments. I wish Ryan all the best!

[kellyOd in reply to Vflowers]

Thank you! We are waiting currently for the drugs to be mixed in the pharmacy, he’s in the chair as we speak. We are praying! Hopefully minimal side effects... 🙏🏻🙏🏻

[missyrand Ambassador]

Kelly

The current thinking on these combo immunotherapy approaches is that either it is the combination itself that may be additive in knocking back/ out the melanoma or that we can’t tell which immunotherapy the individual patient tumor will respond to best, so the double approach produces a faster response than a sequential one. The mechanisms of each drug are a little different ( the pathways vary) and the genotype of tumors, including the diversity of mutations, impact responsiveness. So while the statistics show generally better outcomes for a group of people on the combination trials, science is still trying to figure out WHY this improved outcome is occurring.

And, no one really knows what the “optimal” doses are yet. The 4 rounds of Yervoy or 12 or 24 months of Keytruda are under active testing right now to find how low can you go to get good treatment and lower the bad side effects. There is evidence of trials where some folks got all doses and some got a single dose and had the same clinical outcome. It’s maddening, I know, but it is how an individual responds with their unique make up within the group of people in a study.

This is where choosing hope over crippling anxiety might be a strategy for us as caregivers. And I’m speaking loudly to myself as a full member of this choir, right?

Wayne has had extraordinary amounts of Keytruda. Melanoma progressed. He got 3 out of prescribed 4 rounds of Yervoy. GI side effects right in time about a week after round 2. Turned into a grade 3 side effect requiring prednisone and then he joined the 25% of folks who then require Remicaid to finally fix the GI symptoms

We have now met about 8 people who have gotten TIL as a clinical trial. One couldn’t complete even to the infusion of her grown cells and died within 3 months. Another woman has been NED for 6 years. Another woman had no response. Another man was in the 3 out of 10 who died while the other 7 from his group are still alive.

Coming to regular grips with the truth that Wayne and I have and will continue to be informed in making decisions as best we can each day is hard. I’m going to try to continue to remind myself of that instead of second guessing and regretting. Y’all may need to remind me of this intentional choice 😏

But my positivity, my hope, the statistics, my great or adequate team will, the faith and dedication of our family and community, how we eat or exercise can never guarantee the outcome of our choices. For me, this is my essential limitedness as a human: I am not God. I am not Creator and Author of Life. Quid Pro Quo, if I’m good then good things will happen for me/ my family, flies in the face of my observations. Good people try hard and die. Not so admirable people get ridiculous lucky breaks and prosper.

I don’t know if this treatment for Wayne will help, hurt, or be neutral. What I do know is that we have made big efforts to be informed and to weigh these options at each step against our values. For today, Wayne chooses to give this next treatment a try. Even if he does not personally benefit, trials always move the science forward. Others have done so and we have benefitted from their willingness, and in other cases, from their sacrifices.

This is how we generally got in the past 10 years from 6% survival rate at 1 year from a stage 3- 4 melanoma diagnosis to 35% still surviving at 5 years. And that “tail” of surviving includes those with complete responses.

I had 2 melanoma advocacy conferences in the past 2 weeks, so lots of time to learn, listen, and try to apply again to our circumstances. How are other folks managing the tensions between hope and uncertainty?

Missy

[kellyOd in reply to missyrand]

He responded super good to the ipi years ago so hoping he will do fine with it again, but since it’s combined with something he’s never had only god knows what will happen. Maybe you can private message me and let me know when these conferences are and me and Ryan can go, DC is only a few hours away! When does he start the TIL?

[missyrand Ambassador]

Final scans for TIL trial are Friday with tumor harvesting next Tuesday, 3/19 as long as no brain mets show on Friday.

Missy