MRF-Logo2019-Horizontal-RGB
Richard_K
REGISTER
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.

Richard_K

Forum Replies Created

Viewing 10 reply threads
1 2 3 … 47 48 49
  • Replies
      • July 31, 2019 at 6:18 am
      Richard_K
      Participant
        Well I pulled the plug, I am no longer taking vemurafenib. My doctor is very certain that what shows on the scans is scar tissue, so sure, they do not do biopsies in similar cases to confirm any more.

        I’ve been very lucky with the long term results and drug tolerance I’ve had. There is a risk of developing drug resistance. If having stopped and there is a recurrence I can go back on the drug. If I stayed and it became resistant, I would need to find another drug.

        I will continue with a schedule of three month checkups with her as well as three month full derm exams. Also, for the first year, scans very three months instead of the current six month scan schedule.

        • May 2, 2019 at 5:20 am
        Richard_K
        Participant

          I’m afraid I can’t answer any of your questions but I can tell you I have now been on Zelboraf (not as a part of any combo) for 9+ years. Good luck to you and your mom.

          • March 24, 2019 at 4:54 am
          Richard_K
          Participant

            Hi, I use a wide brim visor for cycling. It looks a little goofy, but does a good job.

            https://www.summithut.com/cycling-classic-brim-1.html?gclid=EAIaIQobChMIwbGWqf2Z4QIVzFcNCh05GAFpEAQYAyABEgLYi_D_BwE

             

            • January 7, 2019 at 10:23 pm
            Richard_K
            Participant

              Summer,

              I started on Zelboraf in March 2010 at 960mg twice a day (eight tabs). That was reduced to 720mg twice a day (six tabs) in November 2012 and I continue on that dosage today.

              I had some of your mom's symptoms but today, I only deal with sun sensitivity.  I can also tell you there was significant tumor reduction in just a month.

              This might not help much, but I hope it at least gives you some encouragement.

              • September 24, 2018 at 7:51 pm
              Richard_K
              Participant

                1998 – melanoma stage 1B, did surgery

                2007 – myoepithelial carcinoma, did surgery

                2009 – melanoma stage 4, IL2 did not work, vemurafenib did (still on vemurafenib)

                2010 – prostate cancer. Very slow so choosing to just monitor for now.

                2010 – squamous-cell carcinoma, did surgery

                2014 – melanoma stage 1A, did surgery

                • September 11, 2018 at 2:52 pm
                Richard_K
                Participant

                  I was a patient of Dr. Mario Sznol at Yale New Haven in 2009 and was very pleased. After failing treatments that were available to me at the time, he made me aware of a clinical trial at another hospital that might help. Long story short, he helped hook me up to see Dr. Anna Pavlick at NYU in New York City who I still see today.

                  My purpose in telling you this is that going to New York City or even Boston might be an option for you depending on where in Connecticut you live.

                  Good luck.

                  • September 6, 2018 at 9:16 pm
                  Richard_K
                  Participant

                    Diagnosed Ib in 1998, IV in 2009, and Ia 2014. I have derm exams every three months and onc follow-up every 12 weeks.

                    • August 16, 2018 at 5:38 pm
                    Richard_K
                    Participant

                      Agree with the comments about NOT giving up outdoor activities. I personally love gardening and garden railroading. My 'outdoor uniform' consists of a wide brim hat, sunglasses, long sleeve spf shirt, and long lightweight spf pants. I am on vemurafenib and I sunburn very easy, so the clothing is supplemented with sunscreen for both skin and lips.

                      As to the clothes, I have several brands but I like the ones from LL Bean the best. For me, I can get tall sizes and a looser fit that I find more comfortable outside.

                      • June 29, 2018 at 1:26 am
                      Richard_K
                      Participant

                        I agree that this is a good video, but I am prejudiced.  I am in the video starting at the 4:12 mark. (Don't skip the first four minutes though. LOL.)

                        • November 22, 2017 at 4:42 am
                        Richard_K
                        Participant

                          I started taking Zelboraf (not as a part of any combination) in March 2010 and I still take it today.

                          • December 21, 2016 at 10:18 pm
                          Richard_K
                          Participant

                            Stage IV diagnosis 7 years 3 months ago. Been on vemurafenib now for 6 years 9 months.

                            • February 6, 2019 at 10:20 pm
                            Richard_K
                            Participant

                              Ed, well said.

                              • September 10, 2018 at 8:44 pm
                              Richard_K
                              Participant

                                Rich,

                                I agree with your $.02

                                • September 3, 2018 at 8:22 am
                                Richard_K
                                Participant

                                  So, at 4:15 this morning, there were 9 1/2 pages of crap before getting to legitimate postings. For me, I don't think I will bother checking in until early afternoon, on non-holiday Monday-Friday's. The admins should have had a chance to clean up by then.

                                  • June 28, 2018 at 3:37 am
                                  Richard_K
                                  Participant

                                    For what it's worth, I've been on vemurafenib alone since March 2010. I still take it at 720 mg twice a day.

                                Viewing 10 reply threads
                                1 2 3 … 47 48 49