Oddly enough, we have arrived back at immunotherapy very gratefully. We got the call early in the morning Tuesday; that instead of the chemotherapy Temodar, we would try Keytruda for the last time. His brain MRI is finally stable, and his dose of steroids is at 1.5mg decadron (10mg prednisone equivalent). We literally have the chemotherapy in his night stand, but are holding off to try Keytruda to see if it will work. We are very happy with this. Although the immunotherapy statistics for Ryan’s situation are very different then that of someone who has never had a PD-1 inhibitor before; we are hopeful that the chemo has broken down and changed some things in his body enough for this to work. He never progressed while on immunotherapy, just medicine induced hepatitis that called off the last combo.
We aren’t taking this lightly. The diet is going back into full effect, turmeric and ginger as much as possible. Organic produce. Of course his supplements. Mediation will come back slowly but surely. This opportunity will be taken, and we will do everything we can to help it along. Overwhelmed to say the least. But very grateful. When we get back into the swing of things I will share all of the things we do like we did last year. He is also going through the Maryland Commission to get his medical marijuana card. He hates the effect THC produces but he hates the opiates more. So we will be adding some kind of edible to better his appetite and lessen any pain he has. Since the cancer is primarily in his abdomen he has a considerable amount of discomfort. So hopefully that will help with those things.
I thought this holiday would be pretty grim... but we were thrown a lemon and we are making lemonade. Love you all and my most best wishes for everyone as always ❤️
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kellyOd
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Thanks missy, it was an opportunity we have been pushing for for a while now. And no the infusion hasn’t happened yet, we had literallyJUST picked up the temodar. So insurance has to approve the switch. But should only take a few days. I’m sure he will have an appointment by early next week! Immunotherapy side effects are usually not too bad with him. But he has only had 3 infusions all together. Usually just a low grade fever the first day. Wayne did like 40 rounds of Keytruda right? Trooper..... how is he doing? What options are you guys looking at?
Wayne had 43 rounds of Keytruda and 3 rounds of Yervoy. Fatigue and severe dry mouth were the most prevalent side effects over time for the Keytruda for him. The Yervoy produced a grade 3 colitis side effect that needed Remicaid infusion to finally solve after 8 plus weeks on steroids that he couldn't get decreasing doses of, and diahrrea just continued until the Remicaid.
I need to do an update. Wayne is not great, extremely tired and mostly in bed during the day, with belly ache/ nausea throughout which has wiped out appetite and fluid intake. But we are taking it a day at a time. I'll try to gird my loins for an update shortly.
One of our daughters completed her BS in nursing program this week and we hope Wayne can go with me for a graduation party we are co-hosting with her dad in Richmond on Saturday. As preparation, Wayne getting another hydration infusion Friday (we seem to be solidly in the twice a week schedule for this now) and may bump the decadron back up Fri and Sat to help his stamina to attend the party.
Really glad Ryan is getting another crack at this.
Tonight at our melanoma support group we are going to learn more about the Right To Try legislation, so I should have some details to share with resources afterwards.
I am sorry he’s not doing that good, please do an update whenever you feel like you can ❤️ I would offer any information we have considering the last few treatment options we were given.
That’s amazing about your daughter! Take the good times when they come. That’s an amazing accomplishment! I’m sure you and Wayne are so proud!
I found the Right To Try act not to long ago. I have had that bill printed out and ready to go if we would have to pull it out. But please do let us know more info when you find out how exactly it works!
this sounds awesome. Glad Ryan can try the immunotherapy again. Mark did it for 18 months, and would still be on it if it hadn’t started attacking his esophagus, and stomach lining, but the Dr said we could go back to it again if things change with Mark.
I’m praying Ryan gets some great results on scans and can stay on the Keytruda. Definitely a game changer.
I hear ya on that. All of them are game changers and I’m hoping and praying this can work for Ryan. I know mark has had a tough time with steroids... my god I hate them. So good when you need them but so hard to get off of them the longer they are on them. How is he feeling by the way?!
Mark is doing ok, he was feeling very tired and wasn’t able to make it to work for almost a week. He had his scans on Monday, and everything is still the same no change, they bumped his steroids back up, so he can at least function. He just doesn’t do well at all without a little steroid. He really needs to just stay at 10 mg.
I am SOO happy for you guys. Clean scans are literally the best thing you could ask for, especially going into the holidays.. I envy you hey, steroids are a small price to pay. That’s where Ryan is going to stick, 10mg - 1.5mg decadron. He definitely had a bug. Kids are germ buckets. I am dealing with that now. My 4 year old has been sick for what seems like a month. I’ve had to separate him and Ryan as much as I can. It breaks my heart but I know it is for the best. I am glad he’s feeling a little better though! Like you said in that last comment, I wish we were closer. Literally different sides of the country...
What side effects are you having? I’m sure they are common. How is it working for you? Do you feel any different? Notice any pains getting worse or going away?
Happy he's going back on Keytruda and hoping for as little side effects as possible. Stay positive and take of yourself too, I'll be sending positive vibrations as always. We made many lifestyle changes, radical nutritional ones, if you feel like changing ideas, I'd be happy to help.
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hey, steroids are a small price to pay. That’s where Ryan is going to stick, 10mg - 1.5mg decadron. He definitely had a bug. Kids are germ buckets. I am dealing with that now. My 4 year old has been sick for what seems like a month. I’ve had to separate him and Ryan as much as I can. It breaks my heart but I know it is for the best. I am glad he’s feeling a little better though! Like you said in that last comment, I wish we were closer. Literally different sides of the country... 
Full brain radiation and immunotherapy questions
Nervous night
