As it turns out, I do not have a matched donor. The best they can find worldwide is a 9 out of 10 match and a couple of 8 out of 10 matches. I realized this was a possibility due to Native American ancestry on my Dad's side since HLA matching relies heavily on race and ethnicity. Luckily, with today's technology, and a lovely thing called cord blood banking/donation, I still have the stem cell transplant option. Due to my age and the fact that I do not have a matched donor, if I have to go the transplant route, my new blood system will be created from stem cells found in donated umbilical cords. Pretty cool, eh?
One of the advantages of the cord blood transplant is that my chances of graft versus host disease (GVHD) is only 30%, whereas with the typical allogenic transplant (transplant from donor) is approximately 50%. GVHD occurs when the transplanted cells attack the recipient's body. This can manifest in the form or jaundice, skin rashes, abdominal pain, joint swelling, weight loss, pain, muscle weakness, etc. It can typically be treated with drugs, but can pose significant health risks. One of the disadvantages to the cord blood transplant is that there is a greater risk of infection to the recipient, primarily due to the increased time it takes the cord blood stem cells to engraft and start creating a new immune system- the longer the time it takes to build up immunity, the longer the exposure to infection. GVHD and risk of infection are issues that any transplant recipient faces, so it's not that a cord blood transplant is any more hazardous than transplant by other means.
Another bit of information that came out of the consultation was the concept of minimum residual disease (MRD), or very small minute, leukemia cells present in the blood that cannot be detected by conventional methods of looking at cellular mutations. Since remission is considered 5% or less of leukemia cells in the blood, there are obviously different qualities of remission. MRD positive indicates that there are leukemia cells present even on the smallest level. MRD negative indicates that no leukemia cells are present.
Today, I had a bone marrow biopsy at SCCA. Surprisingly, it went well, and the most painful part was actually the lidocaine used to numb my hip prior to the remainder of the procedure. The biopsy was necessary to confirm my genetic mutations, see how I've responded to my first round of consolidation chemo, and to determine if I am MRD positive or negative. Regardless of the results, I still have the option to choose transplant, however, if I am MRD negative, it is possible that I could successfully beat the leukemia with 2-4 more rounds of chemotherapy.
There are a lot of other statistics and facts I could go into that factor my decision to choose chemotherapy or transplant, but I could write for days about that information. So, here's my decision summarized:
MRD Positive: go right for the transplant
MRD Negative: 2-4 more rounds of chemo
There is always a chance of relapse with either option, however, based on the positive or negative results, I truly feel that those are the best options for me and the Krutzpack. If I were to go the chemo route and relapsed, I would always have the option to do a transplant later, so I find some comfort in that.
Tomorrow I'll meet with my doctor and nurses and go over my results. I guess I would say, I'm praying and have my fingers crossed for MRD negative and more chemo. Although overall, I'm content with whichever route I need to take because I still truly feel that I can beat this and handle the good and hard times ahead. I'll update about my results after I get them tomorrow.
A quick update about my two weeks at home - it was great. We didn't really do a whole lot, but I was able to spend a lot of time with Remi and was also able to give the dogs some extra love. It was also fun to go to the Robert Earl Keen and Lyle Lovett show this past Friday at the Wilma with Toby and the Nobles. I was really happy that my biopsy was pushed one day so that we could spend this past Sunday at home. For the first day of spring, it was perfect- 60 degrees and sunny. We did some shopping, took Remi to the playground, got a blizzard at DQ, and took the dogs on a 4-mile hike at Blue Mountain. I felt great, like my normal, healthy self. There were a few days while I was home where I realized, I hadn't even thought about being sick, which felt pretty good. In the back of my mind, I've always wondered what day to day life might feel like when my treatment is over, like, will I live in fear of relapse, or will I be able to appreciate each day for what it is. I'm glad I was able to appreciate each day that I had at home. It was so nice to feel like a "normal" person again.



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