Starting Tx Next Week!
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Starting Tx Next Week!

› Forums › Cutaneous Melanoma Community › Starting Tx Next Week!

  • Post
    • May 31, 2017 at 9:02 pm
    FaithRun
    Participant

      It has been one heck of a journey.  3 years ago I had a mole that turned out to be melanoma.  It was surgically removed and the sentinel lymph node was not taken because it was in a complicated area.  I went in for my 6month regular dermatology check ups and 3 years later I develop these nodules on my scalp.  Biopsy results came back as metastatic melanoma.  Around the same time I had fallen off my horse and got an MRI that revealed a tumor in my sacrum.  All in all, I have tumors in my scalp and other areas in the skin, my sacrum, hip, vertebrae, shoulder and sternum, liver and left lung. 

      My Oncology Dr has been fantastic!  From the moment I had met him to now he has been charging forward a complete and non tiring man fighting with me for my wellness.  I was admitted to the hospital the first day I saw him and was in the hospital for a week to get myself good with radiation therapy on the worst spots, biopsies, blood tests and immaging.  I am currently home and doing well.  I have taken a very serious role in my diet and how that is helping me stay healthy (I am glad to hear when my Dr says that I am looking strong)

      I have hit some hurdles along the way.  My Sternum is very weak due to the tumors and I have fractured it after a simple cough.  And my shoulder is fractured due to a tumor breaking through the bone.  But, I am dealing with that.  Ice, medication, bone broth and good nutrition. 

      We received the results of the genetic testing of the biopsy and it is a BRAF +.  So, we are starting treatment with Tafinlar and Mekinist.  I am very excited to start treatment and get further along the road of healing. 

      My question is how has this treatment worked for other people.  In their personal experience?  I have read about the side effects and the clinical trials.  Any insight or things that have helped along the way would be greatly appreciated.

      Riding on Faith

       

    Viewing 3 reply threads
    • Replies
        • May 31, 2017 at 11:02 pm
        Bubbles
        Participant

          I hope you are seeing a melanoma specialist.  BRAF inhibitors combined with MEK inhibitors are a great way to decrease tumor burden rapidly for BRAF positive melanoma patients.  Here are two posts that cover a great deal of information about targeted therapy with several links within both:

          This post reviews a new combo with links to some good background info:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/05/encorafenibbinimetinib-brafmek-combo.html

          This post addresses management of side effects with additional links as well:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?updated-max=2017-05-25T10:36:00-04:00&max-results=7

          Hope these help.  I wish you well.  Celeste

            • June 1, 2017 at 11:50 am
            FaithRun
            Participant
              Thank you! I have read the articles and am glad to have more information in my Arsenal. (I’m also crafty, but my sewing machine needs a good dusting off and service… I have a feeling I may have some time on my hands over the next year.)
            • June 1, 2017 at 3:52 am
            Christine.P
            Participant

              I am starting the Taf/Mek combo myself on Monday (June 5). Perhaps we can compare notes and experiences as we start the new treatment. I did ipi/nivo and got pneumonia and hypothyroidism but did pretty well on nivo alone (mainly fatigue, headaches, and some nausea). My oncologist has told me to be prepared to experience more side effects with the Tak/Mef – but that it won't be as bad as the ipi/nivo combo. I am nervous but ready to get started.

                • June 1, 2017 at 12:00 pm
                FaithRun
                Participant
                  Hi Christine!
                  I would be glad to share notes and experiences in this treatment. I will also feel less “alone”. This forum community has really helped bring more information to the surface and make it less of a mystery. I do just want to get started and really kick this crud. I am nervous as well because of some of the listed side effects but just hope that I can manage them through diet and plain perseverance. I will be only 3 days behind starting treatment from you so hopefully we can support and cheer each other on as well as swap recipes for healthy snacks (if your into that) Have a great weekend!
                  • June 1, 2017 at 10:07 pm
                  Christine.P
                  Participant

                    Hi, Faith (my apologies if that's not actually your name…) 

                    I'd really like to compare notes and would say I'd love to swap healthy snack recipes, but I'm afraid that part might be a little one-sided for a while. 🙂 I'm just now getting into the diet adjustments, so any tips you have would be great. 

                    I had my "teach" session with an NP today and we went over ALL of the side effects – common and not-so-common. I gotta tell ya, it makes me a little nervous. I always hate the not knowing that comes before starting a new treatment. 

                    I will keep you posted about my first few days. I've heard the first day is usually OK with the fevers and joint pain and diarrhea hittinig in the days following.

                    Would you prefer to share things via private email or keep it all here? I'm good with either. I'm glad to start with journey with someone else. Thank you. 

                    • June 2, 2017 at 12:15 am
                    FaithRun
                    Participant
                      Hi Christine! We can pm, since i have a feeling that there will be a lot of conversation. Then we can just post weekly updates on the forum for any hiligts that would be beneficial for the rest of the community too. I’ll see if I can find a way to PM you through this.

                      • June 2, 2017 at 12:27 am
                      Christine.P
                      Participant

                        Sounds great. Looking forward to sharing our notes and experiences. It's good not to be alone.

                      • June 1, 2017 at 7:03 am
                      sgreenberg
                      Participant

                        Quite a journey, indeed. My wife was on Taf/Mek for around 9 months, during which time progress of her brain mets was arrested. It unfortunately stopped working after this time, and she's now on Keytruda.

                        The treatment was fairly innocuous. She did have hair loss – but that's rather rare. The primary issue was fevers – which would come on suddenly, along with a nasty dry cough. But once we got used to them and recongized the early signs, they were handled either with just Tylenol or with a 1-2 day break from the meds.

                        Good luck with the new treatment!

                          • June 1, 2017 at 12:08 pm
                          FaithRun
                          Participant
                            Thank you for the insight. I have been wondering about the hair loss. I have over 2 dozen nodules (skin tumors) in my scalp and I will be curious to see if treatment will effect that area due to the concentration there. Was there anything that helped avoid the coughing? My sternum is very weak and I have fractured it last month just by coughing. If there is a way to avoid another fracture I would be more than happy to try.
                            I hope you and your wife’s journey continue with lots of successes and joy.
                          • June 3, 2017 at 7:16 pm
                          Christine.P
                          Participant

                            Hi, Faith – If you like, we can use email to compare notes and share experiences. My email address is [email protected]. 

                            I admit I am getting nervous about starting Monday. There is just something stressful about knowing you're probably going to have side effects but not know which ones or when. 

                            I look forward to hearing from you.

                              • June 6, 2017 at 2:26 pm
                              FaithRun
                              Participant
                                Did you receieve my email?
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