Hello all! I am not sure who was able to access the other forum, so I’ll keep the update short. Ryan got a brain MRI to check up on his previous tumor site, and the cavity is unchanged and stable. The rest of the brain is free and clear! Super exciting news considering the hell he just went through. Last thing we need is his brain making a move.. brain tumors are nasty and unpredictable. Not saying all the rest isn’t unpredictable, but you see what I’m saying! We had plans to go to New York to see our wonderful friend Melanomore911 but due to Covid restrictions we are unable to make it we got our passports today and we plan on doing some much needed bucket list traveling. We all know life is short, and we love beaches. Bahamas or Aruba is in our near future. Treatment wise, Keytruda is the winner for now. It has worked for most of his cancer this round, and the ones that didn’t want to play were removed. Crossing our fingers 🤞🏻
Any updates in anyone else’s neck of the woods? Love to all xoxo from MD
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kellyOd
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Given the recent unfortunateness with radiological reads, I'm sure you got a second opinion, which makes your news of an empty brain all the better!
Travel is so tricky with restrictions. I lost out on travel to Hawaii in April due to Covid.
Wayne was never a beach fan, and really avoided it after his melanoma diagnosis. We have invested in SPF 50 or higher sunscreen, SPF clothing, bigger hats, swim shirts, and a great pop up sun shelter. When we traveled to Mexico we used the mineral based sunscreen that doesn't harm reefs. We also adjusted time of day when we were outside in the sun, swimming in cenotes and underground rivers.
Oh yes we had it looked at quite a few times. The detail on the read is immaculate. More detailed than any impression we’ve ever had. I’m sorry to hear about the lost trip! I am struggling to even get refunded for this New York trip. Considering the circumstances I should be able to. Maryland was put on a few states quarantine list as of the 8th. Wasn’t like that when I booked it. Ugh. You guys had great ideas for sun protection! I ended up buying some of the clothing after I read about what Wayne had! Unfortunately Ryan LOVES the beach. It is his happy place. So we got a nice BIG hat and under armor protective clothing and nice big big SPF protective umbrellas and such. Ryan has had mostly, actually all internal issues rather than right on top of the skin issues. No excuse to not be cautious but I think that has fueled his continued love for sand and ocean. He has severe vitiligo so those spots on his body will burn SO fast if we do not cover them.
2020 needs to hurry up and end. Along with this virus. My 5 year old is doing virtual kindergarten. Pure insanity. Not organized and a huge mess. Ryan is surely planning something to look forward to. He wants to play some tennis today!
This is all wonderful news about the Brain MRI. I am so happy for Ryan and for you. So glad as well that the Keytruda is working. Yeah! Yes, I have a friend who is in his 3rd yr of ALS and he always says “Life is for the living” . Enjoy Everyday! Get out and do that bucket list. We just went on a 10 day vacation driving to Utah, South Dakota, Montana, Wyoming. We visited a lot of the National Monuments, and Ski resorts (we are big skiers) it was fabulous, they were not crowded at all. Have a wonderful time.
As for Mark he is having his PET Scan, and Brain MRI on 9/16 so a little anxiety going on right now, but Sunday is his 65th birthday so I am hoping to take him out for a nice dinner down by the beach.
Prayers and Love you all.
Michele
(PS: What other forum are you talking about? I hope you aren’t leaving here. I look forward to hearing what is going on with you all)
Oh my that’s a lot of awesome traveling! Good for you guys! I’m sure his scans will come back great 👍🏻 Ryan usually knows something’s going on. He has some kind of pain or sign somethings not right, so if Mark is doing good clinically I don’t think you should worry yourself! 😊 Ryan is part of Young Adults with Melanoma - just like we are apart of Melanoma Caregivers. It’s still healthunlocked just a different section 😁 I’m here for the long run!
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we got our passports today and we plan on doing some much needed bucket list traveling. We all know life is short, and we love beaches. Bahamas or Aruba is in our near future. Treatment wise, Keytruda is the winner for now. It has worked for most of his cancer this round, and the ones that didn’t want to play were removed. Crossing our fingers 🤞🏻
My daughter has passed
