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Update and loving thoughts
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Update and loving thoughts

› Forums › General Melanoma Community › Update and loving thoughts

  • Post
    • September 22, 2020 at 1:37 pm
    SOLE
    Participant
      Dear all good people reading this board,

      My thoughts go out to all of you. I have become some kind of an «old timer» here since my diagnosis. I still do read this board pretty regularly and chime in when I can be of help.

      I long to know how Maureen’s husband is doing or Jenn or Hawaii Bob who had tumour very similar to mine about 10 years ago now.

      This board is our comfort place. Thanks to everyone at MRF and the «specialists» that have contributed more than I can really appeciate fully (Bubbles, Ed and many others, forgive me for not being able to mention here)

      At the beginning of my journey in July 2016 I promise myself that I would share my progress until I did from this disease. That was expected with 50% odds at 5 years.

      Further analysis on my case, better understanding of recurrence odds (AJCC 8) and life-saving treatments in so many forms now have forever moved the needle to combat this awful disease. I am a fervent believer of manipulating the microbiome alongside immunotherapy treatments to move the needle even more in the coming months and years.

      My heart goes out to all of you. This is scary beyond comprehension for almost anyone not living/having lived with a cancer diagnosis. One day, it’s going to be seen like a flu. Hopefully not the COVID 19 type…

      So, I’m simply reporting 4 year NED after initial surgery to my right foot sole with a real bad ulcerated tumour.

      It can be done. It is done. Every day. At any stage. Let’s not loose this saving grace board ever.

      We are all a beacon to each other.

      My loving thoughts to all of you.

      M

    Viewing 3 reply threads
    • Replies
        • September 22, 2020 at 2:40 pm
        Bubbles
        Participant
          Hey Sole! Good to see your face! HA! 2016 seems like 40 zillion years ago, doesn’t it? But, just yesterday as well!!! Thrilled you continue to be well and really appreciate the sentiments you express. Welcome to the “old geezer” club – as some of us were recently dubbed! I have seen your encouraging informative posts to many! So very glad that you continue to be NED. Take good care. les
            • September 22, 2020 at 4:57 pm
            Daisy2018
            Participant
              Hey Sole,
              Nice sent an old timer here.
              What do you mean by
              I am a fervent believer of manipulating the microbiome alongside immunotherapy treatments to move the needle even more in the coming months and years.
              What do you do?
              • September 22, 2020 at 5:11 pm
              Bubbles
              Participant
                I’m sure Sole will respond with his particulars – but here are a zillion reports on the microbiome generally and how it relates to response with immunotherapy if you are interested:
                https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=microbiome

                c

                • September 24, 2020 at 1:01 am
                SOLE
                Participant
                  I mean to say that research is coming along and understanding how health begins in the gut! Bubbles has all the up-to-date info on her blog. As to what I have done or am doing: I am no expert, just another melanoma patient. I have tried just about everything but turning vegan. I cant say that my diet has changed my microbiome. I have no proof of that. But research shows that by having the right gut biome, immunotherapy is working far more better and thus saving lives.

                  If I ever progress and recur, I’ll make sure to get my microbiome in line to work for the immunotherapy treatments. I’ll try and have it analyze then and see if I can influence it.

                  As for now and just to casuallly share, I’m resistance training moderately and avoid eating too many carbs. I’m sleeping better and better and restarted dreaming much more often. I decided to cut refined sugar and I indulge (from time to time) in dark chocolate. And organic red wine will always stay with me!

                  There is no saving grace diet IMHO. Everyone is different. But the good bugs, we should all have in good quantity and diversity. Whatever so-called diet get us there.

                  My humble two cents.

                  • September 24, 2020 at 4:48 am
                  MelMel
                  Participant
                    Thank you Sole for your post and sharing about the importance of microbiome. Personally, I think this is the key why the treatment works for some and not others. I am so glad you brought this out to everyone’s attention in a most subtle way. Although my intentions are always good but my means are often misunderstood.
                    In my research on the microbiome obtaining optimal results or correct gut microbiota is extremely difficult through diet and supplements alone. Other than fecal transplants, I know of no other option. Your enlightenment on the topic or at least a sense of guidence in the right direction would be most appreciated and welcome.
                    Wishing you continued success in remaining healthy and happy for years to come.
                    Melanie
                    • September 24, 2020 at 1:12 am
                    SOLE
                    Participant
                      Dear Celeste,

                      My best always. Thank you for who you are.

                      You have changed my outlook on life.

                      Thank you forever.

                      Mxxx

                      • September 24, 2020 at 8:20 pm
                      Bubbles
                      Participant
                        That is most kind of you to say. I have witnessed you most certainly doing the same for many others.!!! Take good care. les
                      • September 23, 2020 at 12:50 am
                      Summer S.
                      Participant
                        Hi dear,

                        Am so so happy you are well and sound

                        It is 3 AM here we have been up dealing with new treatment side effects, and I read your post, and it made me smile

                        Take care
                        S.

                          • September 24, 2020 at 1:07 am
                          SOLE
                          Participant
                            Dear Summer,

                            I hope your mom gets better soon. FIghting stage 4 since 2018 is no small feat. Sending you loving thoughts. Always.

                            xxx

                          • September 23, 2020 at 8:48 pm
                          jbronicki
                          Participant
                            Hi SOLE! That was very needed right now! Those were just the words I know I needed to hear and thank you for writing such a beautiful update. So glad to hear that you are still NED. I never was one for milestones but now I get it! Every day is a milestone! and our new environment is incredibly stressful, can’t imagine the added stress for cancer patients. THANK YOU! I still wonder all the time about many that have crossed the board and hope everyone is NED for years and years to come. This board is definitely “home” to many of us.HUGS
                              • September 24, 2020 at 1:10 am
                              SOLE
                              Participant
                                Dear Jackie,

                                You provide incredible support to your husband and to all here! I am keeping you in my thoughts too.

                                Best
                                xxx

                              • September 23, 2020 at 8:54 pm
                              jbronicki
                              Participant
                                Hi SOLE! That was very needed right now! Those were just the words I know I needed to hear and thank you for writing such a beautiful update. So glad to hear that you are still NED. I never was one for milestones but now I get it! Every day is a milestone! and our new environment is incredibly stressful, can’t imagine the added stress for cancer patients. THANK YOU! I still wonder all the time about many that have crossed the board and hope everyone is NED for years and years to come. This board is definitely “home” to many of us.HUGS
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