Todd's treatment appointment started with the routine vitals and blood work. His counts were down a bit more today, but this was expected after the week of chemotherapy. His whites were at 1.54 (1,540); Hemoglobin 9.4; and Platelets down to 20,000. These counts were strong enough to alleviate the need for any transfusions.
We ran into a friend and former transplant patient and her husband in the doctor's waiting area. Today was her last appointment! Her chimerism was struggling a bit, but her counts were much higher than Todd's. Her bone marrow biopsy came back clean; no signs of disease! This was such a praise! I told her how hard to was to see other patients from the transplant floor reaching their 100 day mark and getting to end transplant follow-up treatments, when we are back to where Todd started before chemotherapy and the transplant. She empathized and told me that although it may seem that the marker to ending treatment seems to keep getting pushed backed for us, we just need to concentrate on getting to the same end result: recovery and remission. It might just take Todd longer to get there. I found such wisdom in this! We don't understand why God is taking Todd down a different path, but I'm sure he has a reason (His ways are higher than ours).
We saw a different doctor today, an associate of his regular BMT doctor, since she is on vacation. Todd's nurse coordinator also joined us to give us the latest news from his doctor. He examined Todd as usual looking for any sign of Graft versus Host Disease rash. I asked if there is still a good chance that he can get GvHD and he said absolutely yes; with the mixed chimerism, there is still a chance. This would be ideal! If Todd's body could develop a bit of Graft versus Host Disease it would help attack and kill his diseased bone marrow and give his brother's donated marrow the upper hand.
They took him off his magnesium tablets, which is normal a few weeks after stopping the Tacrolimus. The Tacrolimus causes low magnesium, therefore the added supplements. So, without taking the Tacrolimus for several weeks, he shouldn't need it anymore. He does still need to continue with the rest of his medication until further notice.
Todd's cytogenetic report was back from his bone marrow biopsy. It did show one chromosomal abnormality: a deletion in chromosome 5 [46,xy,del(5)(q13)(17), xy(3)]. He had this same deletion, along with three others earlier in the year in April and May, but they had gone away with the four rounds of Vidaza before his bone marrow transplant. So, this one deletion has come back.
I asked what the next step was going to be, and his nurse coordinator jumped in and said that his doctor would like to get a couple rounds of Vidaza in before doing the second stem cell transplant. So, we know that he will start his next round January 12, 2015. I'm not sure if there will be a third treatment in February or if they will go on to the stem cell transplant. They will be looking for a decrease in his blast counts when they do a follow-up bone marrow biopsy.
I also asked if there was a mistake in his chemotherapy, the trial medications, or the immunosuppression regimen during and after the transplant that allowed him to relapse. I explained that I had heard of other patients having their own marrow
suppressed instead of the donor and that his doctor was going to do this
for the next stem cell transplant, and he said that this was not
standard protocol for an initial BMT. He reassured me that it is standard procedure to always suppress the donor marrow because without immunosuppression there would most definitely be severe GvHD. I also asked if having the chromosomal deletions prior to the transplant contributed to the relapse of his MDS, and he said there is no way to know the answer to that question. He explained that Todd's current doctor is trying to learn the answers to this question with her clinical trial. In his opinion, nothing done during the first transplant contributed to the relapse.
We don't need to go back to Cleveland for treatment on Friday, December 26, as long as we arrange to have his CBC blood work drawn here in Dayton, and follow-up with any needed transfusions at a local hospital. Our next Clinic appointments will be for treatment and seeing his regular physician on Wednesday, December 31, 2014, where we will discuss his latest chimerism results, the plans for future treatment, and to schedule additional appointments.
His 100th day is Christmas Day. Although we won't be celebrating a cure or remission, we will be celebrating life!
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