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MDS-RS, bone pain and wirght loss.

This topic has 2 replies, 3 voices, and was last updated 10 months, 3 weeks ago by Joe Catalano.

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May 16, 2023 at 12:50 pm #61847

Shaunna Robey
Participant

My 45 year old special needs daughter was diagnosed with MDS_RS 3 years ago. Over the last 5 months she has lost 20 pounds and developed sternal, iliac crest and long bone pain. Her new oncologist (We moved to a new city), does not think all of this is due to her MDS, which is contrary to literature I have read. There is no other reason for this weight loss and her appetite is fine. I would appreciate any insight from others.
Thanks

May 20, 2023 at 11:23 am #63171

Bonnie Shaffer
Participant

Hi there,

I have MDS/MPN with RS and Thrombocytosis.

I have had pain in my hip joints that gets pretty bad, but that’s it.

I have not lost weight at all. My appetite is normal.

Losing that much weight in 5 months is concerning. Maybe go for a 2nd opinion? Maybe there is something else going on?

Best of luck.

May 30, 2023 at 9:09 am #63211

Joe Catalano
Participant

I recently started losing weight and it occurred to me that I I am on Ozempic for diabetes II. I’m going to speak to my primary care doctor about discontinuing the Ozempic. See if that is the cause of weight loss. I have been on Aranesp for four months. although my hemoglobin has gone up from 7.7 to 8.7 I am still feeling very tired and weak. I will be discussing the risks and benefits of increasing the dosage.
I offer this in case there is a drug that is being used that is causing the weight loss
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