His counts were in the pits, needing another blood transfusion, less than a week since his last one. His hemoglobin was at 7.3; white count was .300 and his ANCS were too low to count. His platelets were hanging in there at 29,000.
The bone marrow biopsy went fine, but it took hours to get the blood he needed from the blood bank. Apparently, there was an emergency in the ER in which a lot of blood was needed. So all non-life threatening requests had to be stayed. He didn't get to start his first unit of blood until after 4:00 pm.
Meanwhile, the doctor had to come down to his treatment room for his appointment. There wasn't a lot to discuss until the bone marrow biopsy results were back. We discussed possible scenarios for treatments speculating with what the results could be. We were told to expect her to call with preliminary results by Friday evening, but not to expect a definite treatment regimen until she had a chance to confer with the other BMT doctors at their Monday conference session.
We got home after 10 pm. Exhausted from the long day. The weather was so bad school had been cancelled back home for our daughters that day. It was cancelled for Thursday too, due to the extremely low temperatures. Our daughter, Abby, at the University of Cincinnati came home to visit since her classes had also been cancelled all week.
Friday morning we mustered all of our energy and headed to Savannah, GA for a college visit for our daughter Hannah.
We got the call from his BMT doctor while on the road about 5:30 pm. She told us the preliminary results showed that the chemotherapy Vidaza treatments were able to get his blast counts down from 7% after the transplant to 3% now. We were pleased to hear that even though his counts weren't lower (>1-2%), that they could still proceed with further treatment, most likely a second stem-cell transplant. The possibility of just doing the Donor Lymphocyte Infusion (DLI) of white T cells would likely not be an option. Instead his doctor is leaning towards the second transplant using some chemotherapy to suppress his original diseased bone marrow, so his brother's additional cells can gain the upper hand.
She also brought up the trial study option we talked about earlier, the drug AG 221. She said that the Cleveland Clinic has been in the process of getting registered to do the study, and that they were hoping to have it available soon enough to treat Todd there. So, needless to say, I'm going to do some more research about this study.
Overall, I was encouraged by this news and I can't wait to hear the other results of the biopsy as they come in. They are checking his genetics again for the trial criteria, his cytogenetics, and chimerism. I'm anxious to hear her final recommendations too. I'm assuming that if they do the transplant, that it will happen in the next 2-4 weeks.
Todd reacted to the news differently. The day we were at the hospital and his doctor brought up the trial study, he said it bothered him to hear talk of enrolling him in a trial. He feels trials are for patients with no other options. Today, his first reaction was to express a desire to do another round of Vidaza. But, I explained that I had read that the sooner a patient has a second stem cell treatment after relapse, the more success they have. So, I really feel like time is of the essence here. His doctor, I think feels that Vidaza has done what it was meant to do, but that for now they need to proceed to the next treatment.
I reassured Todd that there are a few options left. The second transplant, another medication Revlimid if he continues to have just the 5q deletion, and the trial. Although the trial sounds scary, many patients have been fortunate to be cured or put into remission by having the advantage of being in one.
I asked about whether the multiple transfusion would interfere with his treatment options and her answer was no. That most MDS patients need transfusions like this. Todd had just been fortunate enough to not need them early on. The only detriment of the many transfusions is that Todd will accumulate iron in his blood that maybe over heathy limits. I asked about using chelation therapy to remove the excessive iron but she said that most doctors have found that it doesn't help and that at the Cleveland Clinic they don't even monitor his iron levels. It is a concern, because excessive iron can build up over time causing damage to vital organs. I guess, in the BMT doctor's mind though, this is a lesser priority than trying to get rid of the Cancer and/or staying out of danger from the detriments of low blood counts.
There is so much more to write but I'm already behind in getting this posted. I will try to post again soon about the trial drug, our current financial situation, and other concerns.
Thanks for your continued support.
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