Update on Ryan: Hey guys! Real quick... - Melanoma Caregivers

Melanoma Caregivers

Update on Ryan

kellyOd
kellyOd

Hey guys! Real quick update - not too much. Ryan saw his oncologist yesterday and she is as amazed as we are. Keytruda is treating him well and we will continue to truck on this path. He had blood work done after the appointment and we received the results this morning. Liver and kidney functions are 100% in normal limits, and even though he is iron deficient - his red blood cells continue to rise and the IV iron infusions he received seem to be working as well. No update on those counts due to it needing many weeks to show progress. Fatigue is getting better because of the low counts - our way of knowing it’s going good. Almost no pain to report - HUGE CHANGE since December. He is on month 3 since last PET scan but we decided to get one in July due to his success thus far. That means he will have 2 more Keytruda infusions under his belt by that time. His vitiligo on his hands have extended up his arms - and by the medical journals I have read - that has been consistent with a good outcome of immunotherapy. Which we see. He is doing and feeling the best he has since his last tome NED. He is OFF steroids! Took a while to wean.. but we did it as safely as we could to avoid adverse reaction and having to go back on. He is doing lovely. Pain medicine is weaning down wonderfully as well! God has been absolutely wonderful to us. We are blessed beyond belief. This roller coaster is the worst. But enjoying these moments because that’s the fuel we need in case we take another dive into the unknown. To my friends here - I hope you are well and would love to hear updates. Me and Ryan talk about you and your journeys all the time. Always in our prayers.

Love from MD

10 Replies
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That is the best news! Thanks for making my day. You, Ryan and all of your team including his doctors are amazing . Hugs from California.

Thank you so much for your kind words! I am so happy that could make someone else happy. How are you doing!?

Last week we had the first good news in a long long time. After two months in Braftovi and Mektovi , my son’s PET looks good! His three lesions are no longer visible. What a relief in so many ways. I thought our next stop might be a clinical trial at MD Anderson but couldn’t imagine how we would be able to travel from California to Texas during a pandemic. So we are enjoying this relief right now. I had almost forgotten what happiness feels like because worry was my state of mind for a long awhile. That’s an overstatement but it feels so good to wake up happy every morning . I practice mindfulness with gratitude mediations every day and I find that helpful. Worry is always part of the landscape with this disease and I am

a BIG worrier. I read somewhere that Inside every worrier is a warrior and I think that I am a warrior too. So I cherish these good days. I really do feel great joy whenever one of you has good news to post. It makes me feel so very hopeful.

So happy to hear such good news!

Wow, that is wonderful news!! So happy the Keytruda is working and being kind to Ryan, you deserved that break so much. How is Covid impacting all this?

We are doing fine, Frans has been NED for a little over a year now, next scan is in 2 weeks, consultation will most likely be virtual again. Love to you all <3

Great news Kelly; so happy for you & Ryan!

missyrand
missyrandAmbassador

Delighted to hear these update details going in a positive direction. I hope in July there is continued objective feedback for this trend with energy building for Ryan. I’m glad for the state of relief in your post, Kelly.

Peace,

Missy

Thanks everyone! It’s been lovely. We are looking forward to vacationing at the Outer Banks in NC in July. Ryan jokes and said “if I get a good scan I’ll buy another week!” - not feasible (It’s so expensive 🤣) but I said we can ABSOLUTELY celebrate! Strawberry jam I am SO HAPPY FOR YOU GUYS!!!! Ugh I also love good news. It really gives you so much hope. This website has given me so much hope from the very beginning. Covid hasn’t affected his process much. He can go to the hospital but only by himself. A change for me - I’m used to being by his side all the time. Also with doctor appointments - I can’t go - but I get FaceTimed in!

Great news, Kelly! Enjoy your vacation!

Outer banks of North Carolina; perfect healing grounds. Enjoy!

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