Periodic health updates, with most recent events posted on top
October 31 – Happy Halloween! I expect to be released from the hospital tomorrow. My white blood count is up to 3.8 and absolute neutrophil count is up to 1900. These are better counts than I had when I came in! The red blood cells are slower to recover and for the most part I will be dependent on transfusions for about a month. But, I am creating some of my own cells. The medical team is now monitoring me for Graft vs. Host disease, but so far there is nothing to indicate any problem. Once I am sent home, I will still be making daily visits to the Adult Bone and Marrow Transplant clinic for 30 to 60 more days, but I am hopeful that it will be shorter than that. Right now, dealing with some nausea and diarrhea but nothing beyond discomfort. Still walking 2 or more miles a day, but looking forward to doing that outdoors starting tomorrow!
I will continue to be on ani-rejection med after leaving, but hoping we can switch from IV to oral.
October 12 – Thank you Rebecca and happy birthday to me. Yesterday Rebecca endured what turned out to be a marathon session collecting stem cells because of some equipment issues. She says it was slow, but not painful. I hope that was the case. As it turns out, adequate cells were collected and at 1 pm or thereabouts I will get an infusion. Yesterday was my last chemo day to condition me to receive the cells. As before, it has taken out my gut and made me kinda uncomfortable, but all is well. Also, today is “Light the Night” day at Duke with a patients’ walk. It’s looking like I may be the only patient up do doing it, but good friend and fellow allo transplant survivor Thomas will be here to walk as well.
Tomorrow I start on the anti-rejection meds and I can expect blood counts to start to crash as I switch from my cancerous stem cells to Rebecca’s healthy cells. THANK YOU, Rebecca!
October 10 – Five of six chemo days in the hospital are over. Tomorrow is the heaviest dose that will complete the conditioning for the stem cell transplant on Wednesday. My sister is in the process of conditioning for donating her stem cells and it is not a very pleasant experience. But, of course, I hear no complaints from her. They will collect the cells from her tomorrow. For me, no complications other than the expected nausea, GI issues, etc. As blood counts go down, I’m feeling the fatigue, but the tedium of being stuck on this one hospital wing keeps me active with walking, light resistance training and recumbent bike. All is well. I hope the same is true with Rebecca.
September 29 – My PA called yesterday with the good – great – news that results of bone marrow biopsy show less than 1 percent plasma cells. Which means that the cancer level is darn near zero and the lowest since I started this journey. In October 2010 when I was first diagnosed, it was greater than 85 percent.
The real significance and cause for celebration is that all clinic trials and studies demonstrate that the lower the level of cancer present going into a stem cell transplant, the longer the remission and, perhaps, even a longer overall survival rate. Happy dance.
September 21 – Last infusion of Daratumamab, I hope. Since it is an engineered antibody instead of a traditional chemo, it has minimal side effects. It does cause infusion reaction, so I have to take high dose of Benadryl and a steroid for two days post infusion. With luck, this will be last dose before going into hospital Oct. 6.
September 18 – No health news. Just waiting on insurance approval. Officially starting this web site.
Sept. 12 – Overview of the plan:
I will be in the hospital throughout Oct. for high dose chemo followed by a donor stem cell transplant. Over the month I will receive immunosuppressants to reduce chance of rejection. The expectation is that the donor cell’s will “engraft” enough for me to go home, but November through December I will make daily visits to the transplant clinic to monitor for Graft vs. Host disease and a host of possible infections. About 100-180 days after I receive the donor stem cells I should be completely engrafted with donor cells having completely replacing my cells. At that point, I will go on a maintenance chemo to keep the Myeloma in check until my “new” immune system heals and grows stronger. When all done… while I will not be “cured,” I should be in a functional, long-term remission!