Bone Marrow Biopsy Results returned prior to transplant.

Todd's bone marrow transplant doctor sent him a message yesterday, August 22, with his cytogenic results from the bone marrow biopsy he had on August 7, 2014, as part of his staging leading up to the transplant. 

We were shocked to learn that with four rounds of Vidaza, all four of the chromosomal abnormalities/deletions he had been diagnosed with biopsy earlier this year, had been reversed, and that NO deletions were detected on this biopsy.  While we knew this was possible, we were surprised to learn he had responded so well to the chemo.  According to the transplant doctor, this is great news to receive prior to having the bone marrow transplant. 

Not only did the Vidaza help with the deletions, but his blast counts were still down to about 1%.  These results will give Todd ideal conditions going into the transplant.  We are thrilled, but couldn't help to question, "Why should we still do the transplant then?" 

So, I began trying to pull up research on the reversal of chromosomal abnormalities after receiving Azacytidine or Vidaza.  After reviewing some research, I learned that these results are short lived and are dependent upon repetitive use of the drug.  It seems like with those who did achieve some kind of remission, it was only for four to fifteen months before relapse.  Some also suffered from neutropenia, which is low blood counts that require treatment, and others had some long-term side effects from the toxicity of the drug. (Raj and Mufti, 2006: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1936359/#!po=46.9780)    The actual dysplasia of the blood cells that is found with the initial MDS diagnosis are still present in all cases, meaning there is no change with cause of the disease. 

Once again, we feel reassured that Vidaza was a great short-term option for pre-loading before the transplant, but it is not a great long-term solution for Todd's case of MDS.  We still feel like the transplant with his perfect match donor is the best long-term solution for him at his age of 45 and with the progression of his MDS.

Appointment with New Oncologist: Vidaza follow-up

Todd met with the new local oncologist on Tuesday, June 10, 2014.  He was so pleased!  The oncologist's bedside manor made it easy for Todd to discuss his medical condition, current and future treatment.

First, Todd had his blood work done, which showed another all-time high platelet count of 136,000 which is completely in the normal range.  His other CBC counts were about the same but stable. 

The local oncologist reassured Todd that fatality rates for allogenic bone marrow transplants with a donor that is a perfect match/family member are less than 10% versus the higher 20-30% mortality rates were we told initially.  Those rates were too high and made made us uncomfortable doing the transplant any sooner than absolutely necessary. 

The opinion of this oncologist is that Todd is in "remission" right now with the Vidaza treatment.  He will gladly work with Todd's doctors at The Cleveland Clinic to administer the additional rounds of Vidaza however they prescribe it.  He is also willing to work with Todd during and after transplantation. 

We want to thank our friend Bud Mays who recommended him to us.  We feel very grateful for this doctor. 

So, where do we stand?  A second round of Vidaza starts Monday. Todd is going to do the same 5+2 day outpatient treatment. They discussed why this local group of doctors only schedule 5 days of treatment instead of the prescribed 7 days. 

He stated that 7 days were not well tolerated by most patients because by waiting over the weekend to do the additional 2 days on the following Monfay and Tuesday makes it like having the treatment for 9 days (since the chemo is still in the patient's system over the weekend).  But he is willing to do whatever his transplant doctor prescribes. 

Todd's MDS is still there even though the word "remission" was used. It's not going away permanently. There is a good chance it will stop responding to Vidaza at some point. In addition, it is tough going through the treatment every 28 days. The only long-term cure is the bone marrow transplant. 

The new local oncologist called these pre-transplant treatments of Vidaza "pre-loading" or getting the body in the best condition (lowering blast counts) to help insure a successful bone marrow transplant. 

Todd is well rested from vacation. We will enjoy celebrating Father's Day tomorrow and be ready for the first dose of the second round of Vidaza on Monday, June 16, 2014.