Questions on Neutropenia, Vidaza

[ccpat]

Well, here goes…my husband was diagnosed 12/08 with MDS/RCMD. He’s 64,and has always been very healthy and active. He managed to have only 2 tx, but his blood counts are low–HBG hangs in the 8’s, and since May his WBC has dropped. His neutrofils are below 100 and he’s been neutropenic since May unless he gets Neupogen. He has had Aranesp and Neupogen, to no avail–except his ANC goes up w/Neupogen. Now he’s about to start on Vidaza–which they say will lower his counts even further. What kinds of reactions have folks had to Vidaza? Do you all stay home, wear the respirator when you go out? We are very careful with Neutropenic Precautions–but I guess it could last for months and months. Could some of you "more experienced" folks shed some light (or dark) on this? Thank you!

[jaxem]

ccpat
RCMD is a bit rare. one or more of the chromosomes are abnormal causing cytopenia. I guess you’re saying his hemoglobin is in the 8’s and his neutrofils are less than 10 rather than 100. "wearing a mask" doesn’t really do much but alert people to stay away. He needs to keep free of children and people with possible infection as he is susceptible to infection. have you looked into getting a transplant? Donor available? Vidaza will lower all counts even more. get back to this Forum to talk more candidly about your husband’s disease.

[ccpat]

Yes, he has been screened for a transplant, has a sibling who is a "perfect" match, but the timing is not right at this time. His disease has not progressed to the point of needing one yet. I was wondering how other people handle the Neutropenic Precautions, how long at a time they have to do that and what kind of reactions they get with Vidaza. He will be started on that next week. We live pretty much in isolation now, and when he starts on Vidaza I guess we "double up" on precautions? Thanks for your input.

[Mary4Mike]

ccpat,

Everyone responds differently to each treatment. My husband had no bad reactions to Vidaza. It kept him off transfusions for 14 months,however, he had EXTREME tenderness at the injection sites. He had neutropenia several times while on Dacogen. We never lived in "isolation", but took precautions ie hand washing, staying out of large crowds, etc. We still went out to dinner, church, etc. He rested a lot and didn’t push himself needlessly. He has held onto his job through this whole process and he plans to return to work after his transplant if the Lord is willing. I pray that Vidaza works for your husband the way it did for mine.

All the best,
Mary

[ccpat]

Dear Mary,

Thank you so much for your response! We have never been able to figure out exactly how much he could get out and about. Going out to dinner sounds great! We have no idea how far we can "push the envelope" and know of nobody who has been neutropenic–who feels mostly normal. My dad had RA and died within 6 months of diagnosis 13 years ago at age 80. That has put us on edge, even knowing how little was known about this disease then.

I’m so glad to hear the Vidaza worked as well as it did for your husband. My husband’s sister is also a perfect match, but we’re not quite there yet. You and your husband have really put in a few years at this! Thank you, again, it’s really helpful to hear from you. We will keep you in our thoughts daily as you go through this next phase and he returns to you–and to work–a new man.

I’m beginning to think that this forum can be quite helpful!

Thanks,
Pat

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