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UPDATE
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UPDATE

› Forums › General Melanoma Community › UPDATE

  • Post
    • August 20, 2019 at 2:17 pm
    aweatherred
    Participant
      Since my last post, and findings of 3 more lymph nodes w/ mets on PET, had another resection (8/5/19) and affected lymph nodes increased to 9! Oncologist has prescribed Mekinist 2 mg daily as well as Tafinlar 150 mg 2 tabs BID. These medications scare the hell out of me! Today is the start date (as I sit here starring at the bottles). Radiology Oncologist consulted yesterday, and has plotted out 4 weeks of radiation, to start in two weeks. He did find another “worrisome” lymph node, so MRI tomorrow to see if this is possibly just an inflamed lymph node or another metastasis, I’m hoping for the later. This roller coaster can slow down any minute now!

      I would like any feedback from anyone that has been on these medications, and how they coped with the side effects. As I am taking these kicking and screaming! I think they call this “healthy skepticism”.

      Any help would be greatly appreciated

      Audrey

    Viewing 3 reply threads
    • Replies
        • August 20, 2019 at 6:33 pm
        Christiane29
        Participant
          Hey Audrey,

          I’m from Germany and diagnosed stage IV this year, 12 weeks after giving birth to my beautiful daughter. I’m on this combo since April 2019. You don’t have to be afraid because of side effects. I had fevers only one time and except from little tiredness I have absolutely no side effects. My doctor says that most people do really good on these meds.

          I hope I could take your fear a little bit. Sorry for my English 😉

          Hugs, Chrissy

            • August 20, 2019 at 11:17 pm
            aweatherred
            Participant
              Chrissy,
              Thanks for the encouragement! I am actually petrified of these chemo drugs, and I’m sure that I sound like an idiot for voicing these fears, but I just want to remain functional and enjoy my life with my husband of 45 years in these golden years of our lives together. Most blogs and comments that I have viewed were so negative. I am grateful to hear something positive!
              Your story has given me a glimmer of hope!
              Audrey
              • August 21, 2019 at 8:55 pm
              Ellie_82
              Participant
                Hi Chrissy, if that makes any difference, these drugs are not considered chemo. They are targeted therapies. I know this sounds like a formality but targeted therapies in general tend to be much safer compared to the traditional chemotherapy that everyone thinks of in terms of cancer treatment. This combo in particular doesn’t seem to be that bad actually. As others have said, you may expect some flu like symptoms (fever, aches etc) and some stomach upset, but that shouldn’t be too bad. Your oncologist should be able to get these side effects under control fairly quickly.

                All the best with your treatment and keep us posted!

              • August 20, 2019 at 8:15 pm
              Hukill
              Participant
                I had 5 ipi/nivo combos and 52 doses of nivo. Your odds of death from the melanoma are way greater than death from the meds. Before I started I never worried about the side effects because I was worried about the melanoma. My treatment was over 26 months and I was able to still work full time.
                  • August 20, 2019 at 11:23 pm
                  aweatherred
                  Participant
                    Hukill,
                    Thanks for the words of encouragement, I feel like a whiney butt even voicing my fears, but again, I’m petrified that the side effects will be so debilitating. I am trying to meet this head on, although fearful. I’ll keep ya posted.
                    Audrey
                  • August 21, 2019 at 3:01 pm
                  obtu.bt
                  Participant
                    Hi Audrey,
                    I am on this combo for 2 months now. Due to side effect I am sometimes on half dose of Tafinler and sometimes on full dose of Tafinlar. For me the main side effect is the high fever that goes between 38.5 to 39.5
                    other side effect is aching sole when starting to walk.
                    But both of them are quiet manageable.
                    I am taking 4mg of prednesol per day.
                    My LDH level goes down from 405 to 230 with those pills in a week.
                    Thats all I can share like my experience till now in my journey with taf/mek.
                    • August 22, 2019 at 4:32 pm
                    Dwarla
                    Participant
                      Hi,
                      I have been on these meds for almost a year. I started them in a clinical trial along with a melanoma vaccine that the University of Virginia developed. That involved 6 injections in my thighs. I have had a few small bouts of acne, the bottom of my feet hurt occasionally, and some of my eyelashes turned white. My hair is changing color, texture and I think a slight curl. I never lost my hair. I am losing the pigment in my skin on my hands, arms and shoulders. My oncologist says that my hair and skin are good signs. Some of these may be caused by the vaccine but I have tolerated it and the Mekinist and Tafinlar very well. I had 2 large lymph nodes that grew larger and larger while taking Opdivo. They were melanoma. I also still had lesions in my lungs, on my liver, and some on L4. One lymph node is gone and the other has greatly decreased in size and continues to decrease. Everything else has been stable for 2 years. I wish you well and hope and pray that you have even better results than me and tolerate the meds as well as I have!
                      Robin
                        • August 26, 2019 at 11:06 am
                        aweatherred
                        Participant
                          Thanks Darla! I’m awaiting word from Oncologist/Rad Oncologist and surgeon as to when to start these medications, MRI revealed more tumors, oncology would prefer another (6th!) surgery to debulk, but I have such a hard time with post operative complications and once out of the post op period, seem to “birth” more tumors. My surgeon is leaning to treatment hopefully shrinking these tumors and then possible surgery if results not optimal. I’m just awaiting the final word. I’ll keep you posted.
                          Again, thanks for the words of encouragement! I’m so ready to get back to my life!
                          Audrey
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