Things have been lovely lately. His oncologist said we can get scans in the middle of February and left that decision up to us, or early March. We picked March. Scans are scary. And we are enjoying him getting better currently. We don’t need scans to see that he’s doing better... that’s all I care about. The cancer is there.. and god I hope it shrinks and by gods grace maybe we can get to NED again.. but for right now we are content with climbing the mountain again. His oncologist said “I don’t need scans to see that it’s working” - that’s all I needed. His appetite is back, he looks like he actually has color to his face and not grey. He has more energy. He isn’t having such a deep affair with the heating pad anymore (lol), his sleep is better, and we have cut pain meds in half. His constipation is under control. I couldn’t ask for anything else right now. He still has periods where it does hurt of course, but it isn’t making him bed ridden.
Keytruda infusion was good. Had trouble with his port for a bit but it fixed itself. They weren’t getting ANY blood return. But eventually it opened up and we were golden. We are going to keep trudging! Our melanoma warriors are just that. Warriors. And he is my blessing ❤️
Hope everyone else is doing okay. I’d like to hear some updates from y’all! Much love from MD xoxo
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kellyOd
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We are in a tough spot right now trying to figure out which treatment to start next as my son progressed on Nivo. He tolerated 16 doses of Nivo ecceptioally well- but I guess it wasn't working. We saw three melanoma specialists at three major institutions and there was no consensus. We are stuck. But there are options to choose from which is a blessing. It feels much better to have a plan and we need a plan. Wish us luck.
I’ve read he’s done the targeted meds and now the PD-1 inhibitors right? If the immunotherapy is a flop (I pray it isn’t) I have contacted NIH in regards to the TIL therapy. What options did all of the three institutions give you? I’m curious! Because if this fails for Ryan we will be in the same boat. He was on targeted meds. He did the ipi/Nivo combo but that gave him medicine induced hepatitis. He rested. Then we tried targeted again, progressed, then chemo, then progressed. So we are back at immunotherapy. And we are praying he won’t progress..
I have heard of t vec also! That was a weird one for us because Ryan doesn’t have any visible lesions. But an awesome option! Our oncologist has said that if one form of targeted meds didn’t work, they all target the same inhibitors so the likely hood of them not working is very high and with Ryan’s history of fast moving cancer we didn’t have that kind of time to experiment. Same with immunotherapy. Ryan was in the clinical trial for ipi when it was first coming out. Worked great for him then, not so much now. It’s too toxic with the Nivo. Missy’s husband went through TIL so I learned a lot through their experience. That would be my go to next personally for Ryan. I would definitely do your research and talk to your doctors to see which one would be right and makes sense for him at this moment. It’s an impossible choice but being informed is The best you can do!!
Til May be difficult to locate because they have closed the trials across the country as they move to get FDA approval. No TIL is available at NIH. There is a new trial coming out of Asia soon. I’d consider asking NUH what is in the pipeline and getting guidance in trials, including TVek plus other treatments, fro MRA and MRF nurse navigators
What we learned with Wayne is after progression from the major interventions prognosis with anything else drops into the 10% and less category for effect. It’s hard to do, but I asked the difficult questions of what the science can tell us about his cell type, previous outcomes and likeliness of getting into remission (NED) and likelihood of life extension, and with what side effects
These are hard questions to ask and consultation with palliative care to assist with making value based decisions. Wayne wanted to try whatever was available, even if the predictors were under 5% for his rare type.
I think of you often and hope you are doing as well as one can in the midst of profound grief. Everyone finds her own way through this, the hardest of life’s challenges. I know that you are surrounded by friends family and church and are thankful for those blessings. Still, it is ever so hard.
I am happy for all of us that you have found the energy to continue to offer advice to us. You have a wealth of information to share. When my son’s
cancer returned a few weeks ago, I wanted to reach out to you for guidance. Thank you for still being here for us.
Kelly, I am so happy to hear that everything right now is lovely. I love that the Dr. sees that this is working on Ryan as well. I pray that it continues, and his scans come out great, and he gets back to NED. So glad that his appetite is better as well, that always worries me. Mark is going on almost 2 years NED, and we are so very grateful for this time. Time we never thought we would have. I know that Ryan was NED for 3 years before his cancer returned, and I think I always have that in the back of my mind. We all know that things can change at any time. Mark has been so blessed to this point, and we are taking it day by day. Mark will be having his PET Scan & Brain MRI in March as well. I am so grateful for this group because there is so much knowledge and information that all of you share, and I know that there will come a time where we will be looking at other treatments. Ryan is a warrior, and you are as well. Keep fighting.
I am so glad Ryan is doing better and for that, you as well! Hope you guys enjoy this better time given to you and pray that the Keytruda will continue doing it's job.
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New member — husband stage IV melanoma
