mrhubahuba

Pleasure getting response from the famous, or perhaps infamous melanoma Mike. I have actually read most of your post and you have been a huge inspiration. I am unfortunately a control freak and like to plan things out and see what my options are just in case approved treatments don’t pan out, hence my question about the trials. I am actually under the care of Dr Weber at NYU and am extremely confident in his abilities. I actually posted today my latest scan results on this blog, 50% reduction in tumors!!!
As for my bio, I guess I should update that everytime I change meds or get scans. Your a real fighter man, keep it up and Happy Holidays!

Both great videos but the Dr Hamid one is really inspiring and should give all melanoma patients hope. The vaccine was really interesting, bespoke treatment, I like that. Now the question is when will these new treatments be available. Thanks for sharing these.

Cheers
John

Wow, amazing education on clinical trials, thanks Bubbles! Your response to my question is something that’s hard to find on internet if it even exist. I am sure I am not the only one on the board curious on how trials work and when we resort to them
I am a planner and like to know my options in the event current meds don’t work. I always say it’s good to have a plan A, plan B etc etc.
I recently was put on Tafinlar and mekinist after having bad reaction to braftovi and Mektovi ( high AST and alt levels and bad hives)and being on Opdivo for 6 months than going to stage 4 while on it makes you start thinking about other options. Weird thing is the braftovi appeared to work really well. My LDH level went from over 3000 to 500 in 10 days.
I just like to know what’s out there in the event I don’t respond or my body rejects meds. Luckily I am under the care of Dr Jeff ” the wizard” Weber. He is at the top of the food chain in the melanoma world and I thank God I am under his care, truly a lifesaver. I am also becoming an autodidact when it comes to melanoma so I understand it better. BTW I told Dr Weber you call him the wizard and his nurses who were in the room started laughing. He definitely remembers you, I guess your unforgettable lol.

Cheers
John

Thank you bubbles and Summer 5 for the advice and encouragement. This board and the people on it have been priceless in changing my whole attitude in a positive way. Since becoming stage 4 and deciding to become more proactive in my care and treatment options, this board has been my compass.

Thanks Chris, the 7-9 month scenario did concern me but I learned when I got this, no sense worrying over things we can’t change. I am curious why you are on the Braf drugs when you are only stage 3. I was under the impression it was for only stage 4 situations. I was in immunotherapy when I was stage 3 but it obviously didn’t work.

Cheers
John

Well I have only been on the Braf/Mek combo a week and since I recently got a opdivo/ipi/ infusion my doctor put me on 3 braftovi pills daily instead of 6 which is the norm because he was afraid of toxicity since infusion was so recent. I have not had any side effects except runny nose which I can live with. Prior to this when I was 3c, I had 6 months of opdivo which caused vitiligo, both adrenal and thyroid glands shut down and psoriasis. I than switched to one dose of IPI after tumors were found in liver and lungs and than 2 weeks later the braf drugs. My doctor took me off the opdivo/ipi combo because my tumor load was severe ( over 100 lesions) and my LDH levels were over 3000.I am 55 and relatively healthy outside of this nonsense so I have always thought the ends justify the means (side effects) and have tried to power through them. Unfortunately for some that’s not possible due to age or severity of side effects, etc.
Good luck to your husband and I will keep you posted.
I don’t want to get too cocky after only one week but I literally feel almost 100% whereas 2 weeks ago I felt like I was at death’s door with unbearable liver pain, borderline hospice. What a difference a week makes.

Cheers
John