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July 8, 2013 at 11:10 pm #21432mikeazParticipant
It’s been awhile for me to be on the MIF forum, but I wanted to give you all an update on my status. This forum has helped me along the way and I’m hoping my good news to date will help you any sort of way. ALL is well (NED) after 16 months and 25 days.
My first occurrence (Stage 2) was on the scalp (2007) and I was put on interferon for a year. The second occurrence was in 2009 on the scalp again and was put on leukine for a year. I was diagnosed Stage IV after an occurrence (3.5cm nodule) in lung. I had a an lobectomy in February 2012, which removed the lower lobe of the left lung. Fortunately, this was the only nodule and I could have it surgically removed. Last April, I asked a few of you about any NED vaccine trials and a number of you were so kind to give me your thoughts. Because I am BRAF negative, there weren’t a lot of trials to participate in. I did find a Phase II trial and was accepted at NYU Cancer Center with Dr. Pavlick, et al. They were marvelous! Briefly, it was a 4 vaccine trial over 12 weeks (1 every three weeks). It studied the TLR 3 agonist Poly-ICLC as an adjuvant for NY-ESO-1 protein with or without Montanide (I didn’t receive the Montanide). After each vaccine, I got a little feverish, but after each injection, the side effects diminished. I started the vaccines in July 2012 and finished in October 2012.
I chose to do this vaccine trial because I felt I wanted to do something to help the “cause” for not only myself, but for other folks in our world. I don’t know if anything will come of the results down the road, but I am hoping so, and I felt empowered to try and do something to maintain NED. I am not advocating anyone with a similar situation to research and participate in these trials. I am writing this because it was this site that gave and still provides me the hope, courage and vital information needed to deal with this “thing”. I will also say that it’s difficult to log on and start reading other Stage IV forum stories because not all of us are at NED. I pray for all of you. Thanks to all of you on this MIF forum for giving me the strength to “deal” with this thing!July 9, 2013 at 9:15 pm #61720zephyr66Participant
mike – so glad you’re still ned and doing so well. and, thank you for being someone who took on a trial which helps give such needed meds. take good care!
sylviaJuly 11, 2013 at 9:38 am #61721buffcodyParticipant
Thanks for the update, and I am happy you are maintaining your NED status. You also give me some incentive to pursue something else in the area of clinical trials if I am reported on my next oncologist consult on Tuesday to still be NED. We shall see. Brain MRI tomorrow as part of the package.
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