Bubbles/Celeste

Oh, Robert! Congratulations on your NED status! Long may it continue!!! It is heartbreaking that this site has declined so much. I try to believe that with effective treatments available and more understood by local oncologists for those in need of treatment for active disease as well as adjuvant care, the needs of melanoma patients do not require this board as much as they once did. However, the participation and needs expressed by patients in two different facebook groups and other forums I also check in on, tell a different story. It is too bad.

Still, I think that folks who do come upon this page deserve answers and help as best as we can provide it. I was incredibly touched to see your message here. It did my heart good. I guess, having broken all melanoma rules since my diagnosis in 2003, what little I can do here is my way of paying it forward.

Your kindness made my day. Thank you. les

I too would like to thank Celeste and Ed too – and many other experts who used to post in the good old days. I was incredibly lucky to find this Board and the people here. I lurked for a while before taking the plunge and posting a few years ago.

Robert, I too was in-transit I think 3d, perpetual in-transit as whenever they did surgery then it would re-appear. In the good old days i was on an ipi vs keytruda trial (was going to be interferon vs keytruda i think but then i lucked out) but that didnt work i was in the ipi arm. Thankfully t-vec plus keytruda seems to have worked for me. And these were all options i was able to discuss w celeste and am sure Ed chipped in with advice and studies.

I dont post too much now as I have been NED for three years finally (dont want to jinx it) plus I am losing my expertise and forgot what i went through so its harder to help new patients. But i am grateful for what i learned on this board and I would go to the facebook group if i have a recurrence. This place did use to be great, a few arguments at times but generally super supportive and wonderfully helpful. Am very grateful for all the help and ideas here and esp Ed and Celeste. I have been increidbly lucky and i try to make the best of my life – something Celeste with her crazy attitude helped me to do!

Best wishes Mark

I also would like to thank Celeste and Ed. When my husband was diagnosed stage 4 in 2019 this forum was a big help. I’m not sure if I posted but the knowledgeable, documented answers I read here were very helpful. Thank You! I now look more at the 2 Facebook groups as we’re dealing with radiation induced brain nicrosus. His cancer has been NED almost 2 years. Please keep posting for us. Also Ed thanks for correcting some people’s misguided advice.
Joy