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April 1, 2013 at 9:56 pm #21155odonoghue80Participant
Hi there, I just want to share some good news. After CT scans, PET scans, & brain MRI in December ’12 showed an incredible and scary amount of disease (spread to most organs including one brain met) I used this site to learn and share experiences about the challenges of melanoma. Many people were of great help and it’s been therapeutic to share my story at times also. Most recently scans this week showed many of the tumors have disappeared and only a couple small, less than 1cm, tumors remain. The brain met is completely gone and my doctor was so impressed with the images. I’m just left with a hole in my head now! But the last few months were extremely difficult. I ended up in hospital twice for about 3 nights each time, lost tons of weight, had cardiac fluid buildup that left me having a hard time breathing. There was severe nausea, body aches, the list goes on. However the last month to 6 weeks I’ve been improving daily. The combination of BRAF drug Zelboraf and the stereotactic radiosurgery are working for now! I’ve gotten active again and do yoga almost daily. Able to go out, meet friends socially, go to games, etc. I’ve added 16 pounds back on since February. Things are looking up. Just want to say thanks to this community for being there when I needed it most and when I’ll need it again. Keep on fighting!April 2, 2013 at 1:26 am #59895Sandalwood36Participant This is such awesome news! Congrats and never stop fighting! You are a true inspiration!April 2, 2013 at 12:01 pm #59896Catherine PooleKeymaster Wonderful news! Thank you for sharing with us.April 2, 2013 at 4:50 pm #59897lizlizParticipant You are a well seasoned Melanoma Warrier! Thanks for sharing this wonderfully upbeat post.April 2, 2013 at 7:42 pm #59898AnonymousGuest Outstanding!!! I’d say you must feel like a weight has been lifted but you’re trying to put weight back on. 😆
“The combination of BRAF drug Zelboraf and the stereotactic radiosurgery are working for now!”. Yup and it’s sweet. However, IPI may have been a contributor too as it can take months for it to kick in. In fact, you may want to consider an IPI reinduction but, of course talk it over with your med team. Kick that disease while it’s down!
Also keep TIL on the table, especially now that the brain met is MIA, though, ironically, you may not have enough disease now to qualify for NCI’s TIL. You should have such ironies
. And there’s PD1.
I’ll beat the hope drum again, it’s wonderful to have real choices and options theses days thanks to dedicated researchers and staff doing God’s work everyday.
But take a break, relax and Enjoy the Gift.
JeffApril 2, 2013 at 9:29 pm #59899erinmay22Participant
yay!!!! So glad to hear the news! Been thinking about you!April 3, 2013 at 1:49 pm #59900Dick_KParticipant Super! Best of luck.
DickApril 5, 2013 at 1:29 am #59901odonoghue80Participant
Thanks again guys & gals. I am keeping on top of additional therapies and options. I recently went to MD Anderson for a consultation and they agreed with my onc at Univ of Chicago to continue on this course. I’m most interested in TIL at this point if its possible. But hopefully Zelboraf works for me for a long time!April 5, 2013 at 2:57 am #59902kylezParticipant Congrats on the great response! It’s so great to feel better.
I asked my neurosurgeon about the holes in my head, like what are they filled with, air? He said, no, cerebrospinal fluid. I’ve thought about that one quite a bit.
Regarding TIL and MDA, here’s a presentation video w/Patrick Hwu about the latest in their TIL work (talk was in March). He said they are seeing even stronger TIL infiltration in mice when combining BRAF inhibitor with TIL (also when combining anti-PD1 with TIL). Like you I also am very interested in TIL as a plan B or C. But in my case MDA said they don’t really harvest TIL from brain mets, at least as of Sept. 2011 when I made my trip there to ask/get a second opinion.
http://www.healio.com/hematology-oncology/hemonc-today-melanoma/adoptive-t-cell-transfer ” class=”bbcode_url”> http://www.healio.com/hematology-oncology/hemonc-today-melanoma/adoptive-t-cell-transferApril 5, 2013 at 12:25 pm #59903CeceliaParticipant I just want to add my congrats! That miraculous combo of returning weight and returning energy must feel absolutely wonderful. So nice to hear that you are able to get out and about while on zelboraf–enjoy the spring (still not quite here in Canada).
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