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Captnike's Recent CancerCompass Activity

  • Captnike has replied to a post on the message board

    Hey Ed, So glad you are doing well, Chica. Too funny. My blood type changed to my sister’s and then changed back. Glad the high dollar eye drops are doing the trick!! Well worth what they cost!! Stay healthy! I’m so glad for the good news! Kim

    January 28 at 1:06 AM view post
    • Captnike has replied to a post on the message board

      Hi Ed. Glad most everything is good for you. I, too, took Ursodiol for a while post transplant. Expensive!!!  Maybe you won't have to stay on it long. Keep us posted. I have 2 more rounds of T cell infusions, Feb and April. That can increase the risk of GVHD, but hopefully not. Otherwise, I feel really good.

      January 29, 2018 view post
      • Captnike has replied to a post on the message board

        Hi Ed, I was familiar with Car-T therapy, but this video is very well done and educational. Taught me more than I knew!! I go back to Houston on Weds. and they are going to take some blood from my sister, separate the white cells (lymphocytes) and give them to me. I don't think they are going to genetically modify them though. Hopefully they will be tough enough to kick the butt of the 2 bad cells  in me that ...

        December 12, 2017 view post
        • Captnike has replied to a post on the message board

          I'm not sure if this puts me in the 50% catagory of non success with full remission until I meet with the dr in Dec. When I left Houston in June there was no residual disease and my chimerism was 100% ( my cells were all my sisters). The chimerism count dropped to 85% allowing any residual cells to try and come to life and mutate. I don't know yet if this is considered a return of the disease or just a few lone cells...

          November 28, 2017 view post
          • Captnike has replied to a post on the message board

            Ed, I am so happy you are doing so great!! You are wonderful for the time and involvement you are doing for our "cause"!!! I wish more people realized how easy it is to swab your cheek to possibly "Be the Match". I think most people think it is an invasive procedure. I've had my first immunizations (pneumonia, tetnus/whooping cough) and 2 others. We are like newborn babies and have to start all over.daze last week a...

            November 28, 2017 view post
            • Captnike has replied to a post on the message board

              Just had my 8 month check up and 2 cell changes are showing up in bone marrow. Going to have a 5 day round of decitipine, then again in 30 days. Hopefully this will get the little bugger cells before they can mature and reproduce. I feel great and have had no bad reactions to the transplant. Feeling really blessed!!!! I am back in GA.

              November 07, 2017 view post
              • Captnike has replied to a post on the message board

                Happy Birthday Ed and Congratulations!!! Great news!!! So glad all is well!!! Here, too. Did you ever have to take Vidaza or decitapine post transplant? Just curious. Thanks! Kim

                November 07, 2017 view post
                • Captnike has replied to a post on the message board

                  I was diagnosed with CMML on May 23,2016 after my PCP had been monitoring my blood counts for 8 months. I had NO symptoms ever, even until today. They put me on the "wait and see" plan since my changes were minor. However, within 6 months, the changes came faster. My doctor recommended chemo, 5 days in a row and 21 off. I had 1 round of chemo and the stem cell transplant team at MD Anderson determined I was a great c...

                  March 15, 2017 view post
                  • Captnike has replied to a post on the message board

                    I had my first round of chemo, Dacogen, Dec. 19-23 @ 30 mg IV for 5 days in a row. I never felt better in my life!!! No side effects, no hair loss, no nausea, etc. Of course I am sure the steriods they mixed in helped!!! Ask about all options and look at other websites for options. A lot will depend on your blood counts and blasts. Good Luck, lots of blessings and prayers for you and stay STRONG!!! Fight the fight!!!...

                    January 24, 2017 view post
                    • Captnike has replied to a post on the message board

                      It is never easy to deal with or accept the daignosis of CMML. I just had bone marrow biopsy # 4...ouchy bum. Stay as positive as you can, try and lead as normal and active a life as you can and I prayed a lot. If you trust your doctor, find out what he recommends for treatment for you. ASK a lot of questions. AND never let anyone put a "shelf life" on you! Statistics have a broad scope of those included in the calcu...

                      January 24, 2017 view post
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