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Old Thu May 5, 2016, 09:05 AM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
Hi Mike - What numbers are you talking about post shot? Blood counts? Bailie's question about bone marrow biopsy is very important - have you had one recently? The % of blasts and cytogenetics are very important and will influence treatment options and decisions. Have you discussed trying Vidaza (Azacitdine) or Dacogen (decictabine)?

If you have a transplant the pre-transplant treatments (conditioning) can vary considerably depending upon your disease progression, other health issues (co-morbidities) and the experience of the transplant team. If blasts are high they might use a drug like Vidaza or a stronger chemo agent to bring the blasts down prior to transplant. Depending on age and health they might use strong chemotherapy, sometimes with radiation to try and kill all of the marrow and immune system (myeloablative) - or in older patients or those with other health issues they'd use a non-myleoablative conditioning regime (sometimes called mini transplant) - this is what they did with me due to my coronary issues. The non-myleoablative transplant relies a little on the transplanted immune system to kill off any remaining cancer cells (Graft versus Leukemia). There his a higher risk of relapse in a non-myeloablative transplant, but a lower risk of the transplant itself killing the patient. An experienced transplant specialist at a busy transplant center would be the doctor to discuss these issues with. A hematologist/oncologist would generally defer to the transplant specialist in regard to eligibility, risk, type and appropriateness of transplant. Different transplant centers/doctors may have different opinions - A smaller transplant center may shy away from a riskier transplant/patient while a bigger more experienced one may not. Before any transplant they'd do a thorough examination to make sure you're healthy enough for the procedure. Chronic anemia and frequent transfusions can both be bad for the heart.

I did not have a port when I was getting weekly transfusions - and did not like having a central line during and after my transplant - although if you are getting drugs or medicine frequently they are convenient. You have to be careful about keeping the area clean.

Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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