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Michele B
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Michele B

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      • December 5, 2018 at 5:04 am
      Michele B
      Participant

        Hello Texasgirl, as Ed said everyone reacts differently, but it sounds like your mom is responding well. I will pray the scans come back showing some positive results. Do you live close to your mom? My husband is the one with melanoma and he is similar to your mom in he doesn’t really ask anything, or to see any reports. I attend every appointment with my husband, and I ask the questions, get copies of all his labs, and scans. I keep a huge notebook. Prayers for you and your mom.

        Michele

        • December 5, 2018 at 4:39 am
        Michele B
        Participant

          Hello, my husband just had his 27th Immunotherapy today, and when he was 1st diagnosed he was very ill,so until they got things under control he did miss some work, but it has been 16 months and he has been back to work for 13 months, really Hs never missed a day. Of course Everyone reacts differently. Prayers thy you do well.

          Michele

          • December 5, 2018 at 4:27 am
          Michele B
          Participant

            Kortney, my husband is the one who has melanoma. Please go and read my story. All of your feelings are valid. Congratulations on your upcoming Nursing  graduation that is an awesome accomplishment. You have been a good advocate for yourself, and no doubt that will continue. You are doing all the right things. I will pray for you,  if you continue to feel such anxiety, perhaps you may benefit from some counseling, that isn’t a bad thing. The what if’s can be paralyzing. You have 2 beautiful children, and you need to enjoy them, and your life. Don’t let this eat you up. You have so much to be thankful for. It’s the holiday season. EnJOY! 

            Michele 

            • December 1, 2018 at 9:11 am
            Michele B
            Participant

              Hi Karina, Yes you absolutely have a right to have all those feelings. My husband was diagnosed 7/17 with Stage IV Advanced Metastatic Melanoma, disease was so advanced no chance for any surgery and he still goes through these feelings at times. My husband has been on Opdivo for 16 months, he was on TAF/Mek for 6 months, and he finally reached NED this September. His next scans are this December. We try to take life moment by moment. You have 2 very precious reasons to be so worried about all this you have been hit with and to process. Sounds like you are at a wonderful cancer hospital, and I will pray the Opdivo works for you. Enjoy your precious babies, and your Christmas. I am new to this site and I am so glad I found you all. 

              Michele

              • December 5, 2018 at 5:29 am
              Michele B
              Participant

                Melanie, thank you for your reply. that is good news to hear that your Doctors agreed that the supplements are not interfering with your immunotherapy. I would think the Gerson diet once  able to eat more food would be a healthy choice of eating. I am trying to do my research on everything I can, for if things stop working we can move on to something else. 

                Michele 

                • December 2, 2018 at 5:03 pm
                Michele B
                Participant

                  Celeste, Thank you so much for your reply. I am going to ask the doctor about the cortisole, and ACTH, I know his thyroid testing last month was ok. Thank you for all the different study’s to read, I will do that tonight. The supplements I am particularly interested in reading about as well. I have heard good and bad, and when I ask our Doctor he is not in favor of them. I look forward to reading the information links you have here on this site about the stopping of Opdivo, this has me extremely anxious. Although I did get equally as anxious about stopping the TAF/MEK, and steroids. My husband is not a candidate for any surgical removal of any cancer because of how wide spread the disease is, that is awesome news that you have been NED for 5 years. My prayers are with you that it continues for you.  I am praying that my husband is able to maintain NED for 5 years or longer. That would be amazing. EnJOY every moment in life. 

                  Michele

                  • December 2, 2018 at 4:35 pm
                  Michele B
                  Participant

                    Paul, Thank you for your reply. I agree. Dr. O’Day is the best. What dose of steroids are you on? Congratulations on NED for 2.5 yrs that is amazing news to hear. We are so praying my husband can stay NED for that long or longer. I pray your scans still show NED. EnJOY every moment of life. 

                    Michele

                    • December 2, 2018 at 4:27 pm
                    Michele B
                    Participant

                      BFL, Thank you for your reply. I have not ever heard of steroid withdrawal, and I have never seen Cortisole, or ACTH Results in his lab work. He Hs treatment this Tuesday, I will ask at this time about testing both of these. Thank you so much for the information. Where did you start in your journey, and where are you now  I pray you are doing well on this crazy journey. EnJOY every moment of life. 

                      Michele 

                      • December 2, 2018 at 4:17 pm
                      Michele B
                      Participant

                        Melanie, Thenk you for the reply. My girlfriend is also on the Gerson therapy for ovarian cancer. It had helped her for 3 yrs. she is now on Gene Target Therapy at UCLA, thank you also for all the information on the alternative medications. I will look into those online. I can see I have much to research, but I am not opposed to having my husband try anything to help with his pain. These supplements are not adversely effecting your labs?. Have  you tried CBD oil, I have many friends suggesting that as well, but know nothing about it. My prayers are with you as you start this journey. ENJOY every moment of life. 

                        Michele 

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