Brain Bleed

[Sue Wood]

My 59 year old husband was diagnosed with MDS just about a year ago. He has low red, white and platelets. His most recent biopsy showed 5% blasts (up from 3% 2 months earlier) but hadn’t started any treatment yet. For the past several months he had been complaining of headaches. Ironically on the day he was scheduled to start his first treatment of dacogen he was admitted to the hospital for a subdural hematoma. He had surgery and seeme on the mend. Just over 3 weeks later he is back in the hospital with another one. His neurosurgeon thinks perhaps they released him too early and will keep him for a full week with several platelet transfusions if necessary to keep his count above 100. I asked him what they would do if this continues to happen and he said we’ll cross that bridge when we get to it, but that he’s never had to do 3 repairs. Further complicating this is that he is being treated locally, not at the COE that treats his MDS since that is a 6 hour drive for us. I have several concerns, will this continue to happen? What are his risks once he starts treatment since it tanks your numbers to start with? Has anyone run into this and how did you approach it? Thanks for any input.

[Anonymous]

Hi Sue, I would recommend going to one of our Centers of Excellence in MDS for a second opinion. Since you are 6 hrs away from the closest center, maybe you can go once every six months and then have your local hematologist, who may be one mile from you, carry out the treatment plan that the MDS expert recommends.

If it is Vidaza that you are referring to, in the very beginning he may feel even worse before he feels better. This actually shows that the drug is working. Hypomethylating agents delete the bad cells but in the very beginning some of the good cells can get caught up in it. So it’s important to not stop too soon to give the medicine a chance to work. He may not respond to treatment until he has finished at least four treatment cycles – or about four to six months.

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