The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

mrhubahuba

Forum Replies Created

Viewing 5 reply threads
  • Replies
      mrhubahuba
      Participant
        Mektovi and braftovi worked well on me. It’s quite fast acting too at least in my case. 4 days I experienced immediate results, tennis ball tumor on my back disapeared and liver pain went away. Last scan showed 1/2 reduction in tumors thanks to the tovi drugs. Its truly a miracle drug. Good luck to your father and I wish him full recovery!
        Only problem I have is I need to take steroids to keep liver enzymes down so I go on and off it untill I build up resistance. Everyone is different though and most people have no issues.

        Cheers
        John

        mrhubahuba
        Participant
          That’s a great success story! Love to hear good news. May we all get the same results.
          mrhubahuba
          Participant
            Mike
            I have read most of your posts and it appears you are fighting the good fight as they say. The good news is you seem to have the biggest part of this Melanoma crap conquered which is the mental part. In my opinion being positive is the most important aspect in dealing with this. Keep the faith man! Things WILL get better.

            Cheers
            John

            mrhubahuba
            Participant
              Dr Weber is a superstar in the field and is currently saving my life. I am going to do separate post on this but just got scan results back and after having Mektovi and braftovi combo for only 3 weeks due to high AST and alt levels, all my tumors have been reduced more than 50% and some completely dissapeared.. Thanks for posting article!
              mrhubahuba
              Participant
                Doesn’t appear to be any downside to trying it. Also is a good energy booster along with exercise. I am going to get ok from doctor and give it a shot.
                mrhubahuba
                Participant
                  I just started taking the braftovi/Mektovi combo 10 days ago and have had good results, I posted here last week. I was only able to tell because the golf ball size tumor on my back disappeared ( where my original mole with melanoma was remover 3/19) and my liver pain ceased. All this after 4 days. I guess it’s tough to tell if it’s working if your not in pain or don’t have visible tumors but my doctor said the LDH levels in liver going down would also be a good sign. Going to doctor this Wednesday and will find out than. Good luck with your new meds, my doctor claims it’s one of the best targeted therapies out there and odds are good they will work, I believe he said 70%.

                  Cheers
                  John

                  mrhubahuba
                  Participant
                    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!
                    mrhubahuba
                    Participant
                      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

                      mrhubahuba
                      Participant
                        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

                        mrhubahuba
                        Participant
                          I was on a similar braf drug (braftovi and Mektovi) and developed mini skin tags all over my torso. Dr said it was just side effect of drugs and they didn’t bother me. The problem was I also broke out in hives all over which caused crazy urge to itch. The meds also caused spike in AST and alt levels so doctor switched me to tafinlar aand mekinist, first dose is today actually. Good luck to your husband!
                          mrhubahuba
                          Participant
                            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.
                            mrhubahuba
                            Participant
                              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

                              mrhubahuba
                              Participant
                                Hi Ellie

                                I see you have been on the Braf drugs for over 2:years and NED for quite awhile. Congratulations! How long do they plan to keep you on the drugs? I just started the braftovi/Mektovi combo and was curious .

                                Cheers and good luck
                                John

                                mrhubahuba
                                Participant
                                  I just started braf drugs and I was curious how long you have to stay on those drugs?

                                  Cheers
                                  John

                                  mrhubahuba
                                  Participant
                                    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

                                Viewing 5 reply threads