My Father-In-Law was diagnosed with MDS in Feb 2011. At the time, and before the start of Dacogen, he was receiving transfusions approximately every 11-12 days. After a few cycles of Dacogen, his need for the transfusions, including platelets, went to once every 2 1/2 months. He was doing well, despite the severe pain in his legs and side effects of he chemotherapy. He also received shots of Neupogen.
Fast forward to March 2012. He stopped responding to the Dacogen and it was requested that he stop the treatment. They were going to try Revlimid. April was a very rough month, complete with many transfusions, platelets and Neupogen shots. In May he was hospitalized in Morgantown, WV for the entire month, into this month, where he also received another BMB. He was on bed rest, also, due to stress fractures in his femur. He was also getting transfused with two units of blood every 48 hours, and platelets almost just as often. He was getting shots of Neupogen almost daily. He also suffered from Pneumonia three times from May 1st until he just got out of the hospital this past weekend. His HGB was going from 10+ to 7+ in just under 48 hours. His platelets went down low, the lowest being 10. Understandably, he was fighting infection. However, he had never had to be transfused so quickly and often as he has since the beginning of May, even in the beginning of his illness.
They did a BMB on May 11. He also had to go back down to his Hematologist/Oncologist today to have another one. I have been reading a lot on this illness lately and finally asked for a copy of the May 11 BMB findings. We have copies of all labs since his diagnosis, but haven't really gotten into the 'nitty gritty' of things since he was responding so well to the Dacogen. During the labs today, his platelets were 10. They were going to send him home (we live an hour and half away). When I saw the platelet level, I demanded that he get platelets before we left.
My husband and I are begging for advice and knowledge in regard to the latest BMB findings, as we are his only caregivers and we really want to know what we, and also HE is dealing with. We really aren't given too much information. His main Dr. says this is simply an MDS setback, but we aren't too sure.
The final pathologic diagnosis states:
*High grade myeloid neoplasm most consistent with refractory anemia with excess blasts 2 (RAEB-2)
*Trinileage dysplasia with increased blasts (12%)
*Neutrophils 24%
*Neutophils & bands 16%
*Neutrophil metamyelocytes 7%
*Neutrophil myelocytes 4%
*Neutrophil promyelocytes 2%
*5q31 deleted
My FIL is 63. In the beginning of this, we were told that he was NOT a candidate for a transplant. He also has hepatitis C and we were told that because of that, it could possibly kill him. They have since determined that he is not a candidate for Revlimid. Now, they want him to stay in Morgantown and be a clinical candidate. I do need to try to research the clinical. And, they are also saying that he needs a bone marrow transplant, after saying earlier in the disease that it was impossible. His siblings are getting their kits sent and he was also put on the Registry.
We are so confused and broken hearted. Things were going well. Now, we do not know what to do. If someone could please explain a few of those things in the finding (I know some, but not a lot) and let us know if this is bad, good, whatever. Opinions, anything would be appreciated. I'm so sorry this has been such a long read. When my confusion sets in, I tend to ramble rather than just spit out the most important facts.
