Caregiver for husband with MDS/AA overlap

[cmcrob]

I've been reading the posts on here for about 1 1/2 years but haven't posted yet. Kinda shy and afraid I'll leave something important out. My husband is 65 years old, diagnosed with high-risk MDS 9/2016 after having bouts of high fevers at nighttime, fatigue for several months, and an internal bleed from an ulcer. He's had 3 BMB, genetic testing (JAK2 and CBL mutations). Had 4 months of Vidaza without success, had 23 weeks of Procrit/Aranesp without success, was hospitalized for 6 days for the ATG/cyclosporine/prednisone treatments. White count is hanging around low normal, platelets were around 20,000 and as of April they had climbed to 100,000. His hemoglobin rarely goes above 7.6. To complicate things, he has AA too. So, other than his platelets getting better, there hasn't seemed to be any improvement with all the treatments. His last transfusion was 8 weeks ago.

He's hanging in there, able to do his desk job at home, but does become very fatigued and short of breath with much exertion.

All that to say, this is a very tiring and worrisome disease. Wondering if anyone else has this complicated and often debilitating MDS/AA overlap syndrome? Sometimes I just need to ask questions about it--it's all so confusing.

Carol

[Neil Cuadra]

Carol,

Your husband has been through so many treatments! It's a shame that he (and you) are still struggling with these diseases. Feel free to ask questions here, or let us know what's on your mind.

I strongly recommend that you attend the Patient Conference in Indianapolis two weeks from now (Saturday May 19, 2018). The chance to listen to experts and ask questions is a great opportunity to go beyond what you already know. You're lucky that it's right in your neighborhood and coming up so soon. It's also a chance to meet other patients in person.

[cmcrob]

I appreciate so much you letting us know about this. We are planning to attend. So happy to get to do this.

[whackerswalsh]

Hi Carol,

I haven't been on the forum for a while, but just came across your original post and my husband has similar parallels to yours.

He is 60, been diagnosed now with both SAA/MDS from Jan 2016.
For the past few weeks he has been in hospital with night fevers where he can go from 35.6 up to 38.4 in just an hour. The medical team give him liquid paracetamol, but are constantly changing up his anti-biotics.
I have been really worried as his counts all dropped quickly, and has been given a number of units of blood together with platelets etc.

But it is the fevers which the team cannot understand nor find the "gremlin", every test has been run and his fourth bone marrow biopsy now done.
However, talking recently to them they are indicating that he could now have full blow AA disease....but I thought to myself...does he not already have it???? So I really understand where you are coming from.

Yes it is a worrying time and for us Carers we take the brunt of everything, we seem them at their worst and best. I try and take every day and "empower" myself to get through, and to also manage my fatigue and constant state of high-alert. I do mindfullness (meditation) and yoga, these really help me focus my mind and to stop the erratic thoughts that can consume us.

Best wishes Barbara