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Great Improvement, and great hope, very little side effects with vemurafenib.
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Great Improvement, and great hope, very little side effects with vemurafenib.

› Forums › General Melanoma Community › Great Improvement, and great hope, very little side effects with vemurafenib.

  • Post
    • August 11, 2011 at 3:40 pm
    dutchhook
    Participant

      Ok, so my wife went on the B RAF medication about 35 days ago. We saw a complete turnaround in energy, appetite and conditions starting in about 3 days. We went back to Chicago for her 28 day review, and tumors are shrinking, she's eating again, and did simple things like went to the grocery store, went to a family reunion and out to Applebees. I know it doesn't sound like much, but she hadn't done any of those things in months. She even drove her car for the first time.

      Ok, so my wife went on the B RAF medication about 35 days ago. We saw a complete turnaround in energy, appetite and conditions starting in about 3 days. We went back to Chicago for her 28 day review, and tumors are shrinking, she's eating again, and did simple things like went to the grocery store, went to a family reunion and out to Applebees. I know it doesn't sound like much, but she hadn't done any of those things in months. She even drove her car for the first time.

      As far as side effects, luckily, there haven't been many, like some others have reported here. She got a pretty good sunburn the other day, even after using 50 or 100 spf, hats, etc… but that is getting better now. She might be a little sore or tired, but we're not sure if it's the meds or not.

      She did get 3 new spots, which they biopsied last Friday. We're pretty sure they're the squamous cell spots they told us about.

      A new spot a few months ago was pretty depressing, now new spots are "Psssh, no big deal" (Knock on wood) We know this isn't a permanent cure, but she's going to make the most of her time here.

      We are so happy with her local Onc, Dr Amatruda in Minnesota and her "study" Doctor, Dr Hallmeyer in Chicago. Teri got a big hug from Dr Hallmeyer last Friday, who was excited to hear of a(nother) success story.

      As I'm writing this, I'm acutely aware of others who have not found an answer, temporary or permanent, and I still empathize with them. Especially those without the B RAF mutation.  So if it's possible, I'd like to share some good news with those who need it and share some hope for those who are still searching.

      Steve & Teri

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    • Replies
        • August 11, 2011 at 4:42 pm
        Laurie from maine
        Participant

          hi,

          Thats great especialy that she is feeling so much better and getting out and enjoying life more.

          I started Braf last week doing my clinical trial thru Mass General with Dr Lawrence, and have been feeling fine too.  Already lump that was in my breast is almost gone and my cough is a lot less(have tumor liver, lung, bones)  I do have fatigue now and then but other than that no real side effects yet.  They did warn me also about huge sun senstivity, rashes and squamous spots showing up, but maybe too early for that to happen yet.  Fingers crossed we both continue to feel good and enjoy life!!

          keep us posted

          laurie from maine 🙂

            • August 11, 2011 at 5:00 pm
            boot2aboot
            Participant

              excellent news this is…i too know it is no cure but anything to make me hopeful again…i was told from my onc that braf meds are due out any day now…i think she called it borifab…i go tuesday to see if i can get into braf/mek study in tampa…also checking karmonos for their braf trial…

              boots

              • August 11, 2011 at 5:32 pm
              dutchhook
              Participant

                Good luck! let everyone know how it's going

                 

                • August 11, 2011 at 5:32 pm
                dutchhook
                Participant

                  Good luck! let everyone know how it's going

                   

                  • August 11, 2011 at 5:00 pm
                  boot2aboot
                  Participant

                    excellent news this is…i too know it is no cure but anything to make me hopeful again…i was told from my onc that braf meds are due out any day now…i think she called it borifab…i go tuesday to see if i can get into braf/mek study in tampa…also checking karmonos for their braf trial…

                    boots

                  • August 11, 2011 at 4:42 pm
                  Laurie from maine
                  Participant

                    hi,

                    Thats great especialy that she is feeling so much better and getting out and enjoying life more.

                    I started Braf last week doing my clinical trial thru Mass General with Dr Lawrence, and have been feeling fine too.  Already lump that was in my breast is almost gone and my cough is a lot less(have tumor liver, lung, bones)  I do have fatigue now and then but other than that no real side effects yet.  They did warn me also about huge sun senstivity, rashes and squamous spots showing up, but maybe too early for that to happen yet.  Fingers crossed we both continue to feel good and enjoy life!!

                    keep us posted

                    laurie from maine 🙂

                    • August 11, 2011 at 5:08 pm
                    Karin L
                    Participant

                      Great news!  Isn't Dr. Hallmeyer great?  My Dr. is Dr. J. Richards at the same facility, but I often see both.  I go back in a couple of weeks for a follow up scan and hopefully it continues to be good news also.

                      Karin

                        • August 11, 2011 at 5:39 pm
                        dutchhook
                        Participant

                          I think we saw Dr Richards walking around last Friday. Everyone has been great. Before we went to the clinic, I was expecting this fancy glass & steel structure for advanced biomedical studies.

                          I looked it up online and it was a strip mall! I posted on our caringbridge site that if we got there and there was a subway and a dollar store, I would turn right around. Sure enough, there's a subway and a dollar store! We went in anyway. (of course). Susan and Emily helped get through some seemingly impossible insurance problems. Dr Hallmeyer said it's hard not to get too excited with new patients so she doesn't get their hopes too high,

                          • August 11, 2011 at 5:39 pm
                          dutchhook
                          Participant

                            I think we saw Dr Richards walking around last Friday. Everyone has been great. Before we went to the clinic, I was expecting this fancy glass & steel structure for advanced biomedical studies.

                            I looked it up online and it was a strip mall! I posted on our caringbridge site that if we got there and there was a subway and a dollar store, I would turn right around. Sure enough, there's a subway and a dollar store! We went in anyway. (of course). Susan and Emily helped get through some seemingly impossible insurance problems. Dr Hallmeyer said it's hard not to get too excited with new patients so she doesn't get their hopes too high,

                          • August 11, 2011 at 5:08 pm
                          Karin L
                          Participant

                            Great news!  Isn't Dr. Hallmeyer great?  My Dr. is Dr. J. Richards at the same facility, but I often see both.  I go back in a couple of weeks for a follow up scan and hopefully it continues to be good news also.

                            Karin

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