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Oldwife
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Oldwife

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      • August 6, 2017 at 9:20 pm
      Oldwife
      Participant

        Journaling can be very interesting not only in the present, but in the future when you or your family looks back on it.  I have gotten some significant insights that way.  And, LOL, it's a writing all about me!  Taking care of you is important, and this is one way to really look at what is important to you.  Hope your recovery continues as good as it has begun!

        • July 31, 2017 at 9:10 pm
        Oldwife
        Participant

          Our primary doc was the one who immediately sent my husband to the surgeon, and good thing he did!  Ask for a referral to a dermatologist asap, and if he/she concurrs, by all means get those moles off.  You want a dermatologist who works with melanoma especially, if you can find one. Please don't mess around or wait with this if your primary doctor thinks they are suspicious. Denial and 'waiting to see if they change more' are not good options. Please let us know the results?

          • May 24, 2018 at 9:54 am
          Oldwife
          Participant

            Thank you to each and every one who replied here. DH started his Keytruda, and seems fine.

            I was driving around Anchorage for all of his appointments and was noticing how blurry my vision seemed… I took the plunge and got my eyes examined (no eye stuff insurance), and sure enough, my prescription has changed a lot and when stressed, i can't compensate, so also bought the new glasses. We can actually afford them, but I usually don't feel entitled to things; your support helped me to push through and get them.

            • April 29, 2018 at 1:50 am
            Oldwife
            Participant

              Thank you, Celeste.  Almost 48 years now, I think that qualifies me as an old wife. smiley I like being older, and am grateful for so many life lessons (hopefully) learned.

              DH has been fighting melanoma for ten years now, he's been stage 4 for 5 years. Interestingly, his overall health and strength is greater now than any time in the last 5 years, and most of the ten, in fact.

              Your tenacious and informed support for us and for everyone on this board is much appreciated!

              • April 10, 2018 at 6:50 am
              Oldwife
              Participant

                It is still possible to get a second opinion/consult from another melanoma specialist. (Your boyfriend's doctor is a melanoma specialit, right?) Your BF can also request to start Taf/Mek and reopen that discussion with his oncologist. Quality of life is an important issue.

                Sending prayers for him, for you, and for his doctor that  together you come to the best possible decisions.

                • April 5, 2018 at 7:33 pm
                Oldwife
                Participant

                  DH started this combo a year ago and it has been very successful. Had a couple of days of fever about 3 months into treatment, but that could have been flu…. otherwise, he is up and skiing, if you can believe that. All the mets he had when prescribed the Mek/Taf disappeared- he did develop a lung met after 6 months which was treated in January 2018 with Cyber knife, but so far, so good.

                  Best of luck to you!

                  • March 31, 2018 at 6:42 am
                  Oldwife
                  Participant

                    Is Cyberknife radiation treatment possible? My DH had Cyberknife for a lung met in January. We haven't had the 3 month CT scan yet to see how it worked. However, the treatment itself was without any side effects at the time, very easy. Expensive though, if insurance didn't cover it. (ours did.)

                    • March 7, 2018 at 5:19 am
                    Oldwife
                    Participant

                      DH has been on Taf Mek for a year now, virtually no side effects, and very good at decreasing tumors presenting a year ago, or disappearing them. He did have a new lung met seen in late November, and treated with cyberknife subsequently. Still on Taf Mek, and feeling better than he has in many years.

                      Worth a try, for sure. Good luck, and blessings to you and yours.

                      • February 24, 2018 at 4:11 am
                      Oldwife
                      Participant

                        Sorry that I double posted back to Celeste; forgive me.

                        Jeremy, my husband has been using a very pure form of CBD oil and this appears to be helping. Since he started taking it, about 6 months after he began Taf/Mek, he has noticed a lot more well-being, to the point he can sometimes even ski a little, or walk the dogs on the snowy golf course. He has had no pain issues. I know this is anecdotal, but we researched effectiveness (such comparisons as I could find) on as many 'natural' treatments as we could , and CBD had the best stats and the longest history of use.  It might be a useful complementary treatment; however YMMV.

                        One of the most helpful things about this forum is the sheer amount of reading on medical research that folks like Celeste have done; invaluable when considering trying this diet or that treatment.

                        • February 24, 2018 at 3:54 am
                        Oldwife
                        Participant

                          Thank you, Celeste. So helpful! My husband is a big guy, has been battling melanoma for 10 years, the last 5 at stage 4. He is on Taf/Mek, so this is good news for us..

                          • February 24, 2018 at 3:54 am
                          Oldwife
                          Participant

                            Thank you, Celeste. So helpful! My husband is a big guy, has been battling melanoma for 10 years, the last 5 at stage 4. He is on Taf/Mek, so this is good news for us..

                            • January 22, 2018 at 9:34 pm
                            Oldwife
                            Participant

                              The Science Daily article is the first good piece of independant evidence that I've seen. Thank you so much! Most helpful!

                              • January 22, 2018 at 9:33 pm
                              Oldwife
                              Participant

                                Thanks for the clarifying questions.  We make it a practice to ask doctors what they would do in the event that they had similarmedical situations. The question was 'what would you do if you had cancer?' and his reply was that he would cut down on sugar intake. It has been known for a hundred years or more that cancer cells have an affinity for sugar. (My words.)

                                The trial statement came up in the context that medical trials require a standard of rigorous structure and accounting for variables that would be very difficult to reach with a large number of participants. He didn't think there would be a large study of people which would definitively answer all questions about sugar intake in cancer patients, in large part because the funding would be prohibitive. 

                                • December 31, 2017 at 10:24 pm
                                Oldwife
                                Participant

                                  This is so helpful! Thank you so much! We've been told Cyber Knife treatments typically have few side effects, but sometimes I also find docs don't 'happen' to mention stuff that can happen. Your experience gives me hope from our patient side of the fence. Happy New Year!

                                  • July 11, 2017 at 4:53 am
                                  Oldwife
                                  Participant

                                    Yes, Dr. Mary Stewart in Anchorage is a specialist, and husband's dermatologist had melanoma himself and is very proactive in working on this.

                                    When I was talking about our primary doc 9 years ago, he was a GP, and was willing to look at my research to refer for surgery out of state, on our insurance. With regards to the melanoma 9 years ago, as soon as he saw it, he sent DH to the surgeon the next day. That first melanoma was up in his (very thick) hair, and I happened to see it when he was crawling around on the floor with the dogs.

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