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.

Twhite00000

Forum Replies Created

Viewing 2 reply threads
  • Replies
      Twhite00000
      Participant
        you have taken the first and most important step. While the mole being flat is no indication how deep it may be and is a positive sign and I am wishing you, your wife and your new baby the best. I am a 9yr survivor and in that 9yrs I have gotten to see my three children graduate college and start successful careers, my oldest got married, my second engaged, and my youngest flourish while I fight my battle. You and your family will have many years of new experiences, I know the waiting can be overwhelming but ALWAYS stay positive it is the secret to getting through these tough times. All the best.
        Twhite00000
        Participant

          I know this is an older post, I hope you are doing well.  I think IA or PsA are under reported side effects of Keytruda and other immunotherapies.  I was only able to remain on Keytruda for less than 3 months before excruciating neck pain and then all joints, and muscle weakness.  I had to go on high dose prednisone for two months then it took another 6 months to wean off.   Now three years later I have psoriasis in my ears it is like an itch you cannot scratch but luckily it comes and goes, and my knees are weak and painful and the prednisone increased my weight A LOT, and I still have not been able to lose weight, I am likely the fattest stage 4 cancer patient in history LOL.   So, yes I believe join pain and muscle pain are caused by Keytruda but for many the alternative is worse.  My story is not all bad though, my PET scan back in Nov '18 came back NED, and I am off all treatment and just need regular scans for observation.

          Twhite00000
          Participant
            The trial I am in may be of interest

            https://clinicaltrials.gov/ct2/show/NCT03026517

            Twhite00000
            Participant
              you need the pathology report. You mention the lesion was not raised that is good. But it really depends how deep the lesion went. Once you get a staging you can discuss a course of action with your oncologist. as I said before you took the first step, removing the lesion. wish you the best, melanoma at stage 0 or I is curable with surgery hoping this is the case for you but if not you still have many options.
              Twhite00000
              Participant
                Celeste thank you. I have been gene sequenced and spent 9 yrs working with drs at memorial sloan kettering been on a few treatments including a trail but am always looking for anything that will help thank you again
                Twhite00000
                Participant
                  Interesting just prior to this I was drinking chaga tea soucred wild from birch trees in vermont. I would hate to think that could be a possible source of a fungus infection?
                  Twhite00000
                  Participant
                    Thank you Lily and I am sorry to hear your mom is going through this too. Yes your mom and I do have similar diagnosis I ahve been fighting this for 9yrs and will keep going as long as I can and your mom I am sure will too.
                    Twhite00000
                    Participant

                      I took part in the trail and unfortunately was having severe vomiting and had to stop.  I was on the meds for three months and did see results two of my tumors shrunk by over 65% and several months later my PET scan showed NED.  

                      Twhite00000
                      Participant

                        and stay out of the sun.  Although my own  Primary melanoma appeared where the sun don't shine and was 8mm deep and stage IIIc before it was discovered and removed.  CHECK EVERYWHERE not just exposed skin.  stage 0 is the stage you WANT to find this not later…

                        Twhite00000
                        Participant

                          Yes, a resistance develops after a while.  I am currently considering taking part in a new trial with the combo plus a third drug that is thought to prevent resistance.  I was on Keytruda but had sever pain and had to go on a course of high dose(100mg/day) prednisone.  This eliminated the possibility of any immunotherapy treatments.  I am down to 10mg/day of prednisone and hope to be at 5mg/day in the next few months.  I have had no prior BRAF inhibator drugs in the past and currently have mets in lung and diaphram that are very slow growing.  My biggest concern are the side-effects, I have had more complications from my treatments and surgeries than from my melanoma, but obviously killing this cancer is my goal.

                          Twhite00000
                          Participant
                            Stage 4 lung met. I am 4 months post lung surgery which was a major fail no tumor removal due to an inoperable number of small nodules a complete left lung removal would have been the only option. They biopsied a wedge with multiple nodules and they all were melanoma. I opted to try keytrudra and the last scan after three months of treatments shows the tumor that was left in me at surgery to be stable at less than 2cm. I had just gotten back to “normal” felt great actually then just before 4th treatment I started getting neck and shoulder pain. I am on a low dose of prednisone to reduce inflamation but the pain has persisted for three weeks now and has gotten much worse. Did you find a remedy?
                            Twhite00000
                            Participant
                              Stage 4 lung met. I am 4 months post lung surgery which was a major fail no tumor removal due to an inoperable number of small nodules a complete left lung removal would have been the only option. They biopsied a wedge with multiple nodules and they all were melanoma. I opted to try keytrudra and the last scan after three months of treatments shows the tumor that was left in me at surgery to be stable at less than 2cm. I had just gotten back to “normal” felt great actually then just before 4th treatment I started getting neck and shoulder pain. I am on a low dose of prednisone to reduce inflamation but the pain has persisted for three weeks now and has gotten much worse. Did you find a remedy?
                              Twhite00000
                              Participant
                                Stage 4 lung met. I am 4 months post lung surgery which was a major fail no tumor removal due to an inoperable number of small nodules a complete left lung removal would have been the only option. They biopsied a wedge with multiple nodules and they all were melanoma. I opted to try keytrudra and the last scan after three months of treatments shows the tumor that was left in me at surgery to be stable at less than 2cm. I had just gotten back to “normal” felt great actually then just before 4th treatment I started getting neck and shoulder pain. I am on a low dose of prednisone to reduce inflamation but the pain has persisted for three weeks now and has gotten much worse. Did you find a remedy?
                            Viewing 2 reply threads