Lynn53

Thank you so much for the link to this blog. VERY informative, and I also love the link to the Melanoma abbreviations!
Best Wishes,
Lynn

Hi Tim! I’m happy to hear you are tolerating the Nivo. If I’m correct, I believe that is the same as Opdivo?? It was tough for me, that part anyway. But I persevered, and I know you will too! My doc said that Opdivo and Yervoy were great if you can tolerate it, so keep up the great work! I’m hoping like Jackie said in her reply that I had enough in my system to keep clear for awhile!! I’m a prayer warrior, so I hope you don’t mind me praying for you! I had to chuckle when I read your wiping everything off you come into contact with, me too!! Hopefully, everyone is! I know I’m washing my hands so much they are looking twice my age due to dryness! For me, laughter in the little things helped me, and continues to do so. I always took someone with me to my infusions that I knew would be able to laugh with me, share funny stories, and let me sleep when I needed! I’m trying to live my life one day at time. Someday’s easier than others like trying not to worry about this upcoming scan. I’m putting my faith in God that research will just continue to keep getting better and better, and break through’s will continue to happen, just like immunotherapy drugs that have come about today. One last thing Tim, WE will fight the good fight until the end, when ever that day may be, but I think we ALL deserve to be in the Medical Hall of Fame right now!! We are fighters!!!!!:-) Please keep me updated on your progress. Take care, Lynn

Hi Jackie! Thank you so much for all the info!! Yes, they did do genetic testing in the very beginning, and they are currently testing the tissue from the most recent removal of my lymph nodes that were malignant. I believe Dr. Bahtia said that it would help us know what direction to go in if/ when I have another recurrence. I believe he told me that I was resistant to Keytruda? If I remember correctly, I believe he said that I do not have the BRAF mutation? I could be wrong on the terminology/name. I go to Community North Cancer Center who is affiliated MDAnderson and he has communicated with them on my case. What I did not mention previously, is prior to my diagnosis, I have had for many years a Mast Cell disease in my bone marrow, Systemic Mastocytosis. Unfortunately, this has further complicatesd things. I appreciate everything you shared, so much of this is still foreign to me, terms, treatments, etc. It all has happened so fast. It’s great to have this site to better educate myself, and to keep an eye on clinical trials. I will look up Bubbles & Primer as you recommended. Thanks again, Jackie.