September 18 - Recurrence and the Rebound
Jan and I sat down on September 13th with Dr. Amy Dezern, head of the MDS (Myelodysplasia Syndrome) branch of Oncology at Johns Hopkins Medical Center.
What Jan and I had suspected from the preliminary results of the flow cytometry and the bone marrow biopsy was confirmed by Dr. Dezern. There is a small recurrence of my MDS cells in the bone marrow. However, the news had some positive results as well. Let me explain.
The chimerism test (a test to show what amount of the the donor and host) showed that Erika's cells were 94% of the sample and my bone marrow contribution (the host) was 6%. This means that the chimerism test from early June, which was 100% Erika cells had reduced down to 94%. The cytogenetic studies revealed that 19 had a karyotype of female (Erika) and 3 had a male karyotype (me). This means that Erika's cells continue to predominate.
The other good news is that my white blood cell count has increased to 6100 with an absolute neutrophil count of 4700 (remember: below 500 is critical). You may now see me in the public without my N95 mask but, in the office, I will continue to use the protection of this mask due to the chance of exposure of viral and bacterial infections. The office is a 'hard hat' area for me... that is, I should wear my N95 mask (the hard hat)! 😂
For now, the MDS team (which also includes Viki Anders, CRNP) has decided, for now, to use close observation versus a more aggressive treatment using chemotherapy. The good news also was shared by Dr. DeZern in that specific targeted therapies for MDS will become available over the coming years. Also, if the graft versus host disease (GVHD) response increases, this may provide a chance of remission. As I have learned (AND EXPERIENCED!), management of GVHD is a 'fine art' of the transplant team. Therefore, the GVHD can actually help (put the MDS in remission). Other times, the GVHD can be very serious and sometimes fatal. Here is a short video on GVHD to help you understand this more fully.
Jan and I hope and pray for a remission from this recurrence. We ask that you, too, please pray for the same. As before, we've appreciated the continuing PRAYERS and support from the GoFundMe site (and off site support) during this challenging time.
If you are readying this through a FACEBOOK link, please feel free to share.
As we experience the remnants of hurricane Florence, please pray for those in the Carolinas who have suffered loss. Have a good (and dry) week!
What Jan and I had suspected from the preliminary results of the flow cytometry and the bone marrow biopsy was confirmed by Dr. Dezern. There is a small recurrence of my MDS cells in the bone marrow. However, the news had some positive results as well. Let me explain.
The chimerism test (a test to show what amount of the the donor and host) showed that Erika's cells were 94% of the sample and my bone marrow contribution (the host) was 6%. This means that the chimerism test from early June, which was 100% Erika cells had reduced down to 94%. The cytogenetic studies revealed that 19 had a karyotype of female (Erika) and 3 had a male karyotype (me). This means that Erika's cells continue to predominate.
The other good news is that my white blood cell count has increased to 6100 with an absolute neutrophil count of 4700 (remember: below 500 is critical). You may now see me in the public without my N95 mask but, in the office, I will continue to use the protection of this mask due to the chance of exposure of viral and bacterial infections. The office is a 'hard hat' area for me... that is, I should wear my N95 mask (the hard hat)! 😂
For now, the MDS team (which also includes Viki Anders, CRNP) has decided, for now, to use close observation versus a more aggressive treatment using chemotherapy. The good news also was shared by Dr. DeZern in that specific targeted therapies for MDS will become available over the coming years. Also, if the graft versus host disease (GVHD) response increases, this may provide a chance of remission. As I have learned (AND EXPERIENCED!), management of GVHD is a 'fine art' of the transplant team. Therefore, the GVHD can actually help (put the MDS in remission). Other times, the GVHD can be very serious and sometimes fatal. Here is a short video on GVHD to help you understand this more fully.
Jan and I hope and pray for a remission from this recurrence. We ask that you, too, please pray for the same. As before, we've appreciated the continuing PRAYERS and support from the GoFundMe site (and off site support) during this challenging time.
If you are readying this through a FACEBOOK link, please feel free to share.
As we experience the remnants of hurricane Florence, please pray for those in the Carolinas who have suffered loss. Have a good (and dry) week!
Continued prayers for all things! !
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