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MDS Myelodysplastic syndromes

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Old Mon Jul 3, 2017, 09:07 PM
Faye R Faye R is offline
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Join Date: Feb 2013
Location: New Zealand
Posts: 60
back pain

Hi Don't know what happen but my post disappeared into space.
I'm now having transfusions every ten days do feel a lot better after the treatment but end up with a heavy body feeling, also my stomach jumps, does anyone else get this. I'm way out of whack with my sleeping patterns wish I could get that routine back. They say my heart is o.k. blood pressure on the low side I'm about 5ft 4. and weigh 68-69kgs. Couldn't tell you what my blasts are now, as my last BMB was September 2014 and show 16% blasts. Have been through the Vidaza treatment it stop working, after 14months treatment. I now have the skin problems not sure if it is myleo cell build up or psoriasis they are ugly and I'm for ever cleaning up skin. DX RCMD 2008 I guess what I'm asking for is any idea's on bed routine as mine has gotten to be not good going to bed between anything between 8-30 and 10-30 getting out of bed any thing between 9-30am and 11-30am
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Old Thu Jul 6, 2017, 06:02 PM
bobspez bobspez is offline
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Location: Southern New Jersey, USA
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I have a routine I follow that has worked well for me. I take a warm shower around 10PM and watch a couple of hours of TV. I go to bed about midnight to 12:30 AM, and listen to old time radio shows on my internet radio with my headphones until I feel myself nodding off, then I take off the headphones and turn off the radio and go to sleep, some time between 1:00AM and 1:40AM. My wife wakes me up at 9:30AM, so I get about 8 hours of sleep. I usually take a half hour nap during the day. I noticed that if I go to bed too early, or don't take my shower, I have trouble sleeping. On the rare occasions I do wake up, if I' don't get back to sleep in 20 minutes, I put the headphones back on and listen to my old time detective stories until I get sleepy again.
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Age 73. April 2016 diagnosed with SMZL (splenic marginal zone b-cell lymphoma). In remission after 8 weekly infusions of Rituxan. Got 4 more weekly Rituxan infusions in Jan., 2019. Sept 2016 diagnosed with CMML-1. Presently on watch and wait.
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