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Old Thu May 9, 2019, 04:15 PM
shadowii shadowii is offline
Join Date: Apr 2019
Posts: 38
weight loss

Hey all,

Been a roller coaster since we I last posted but dad was discharged from the hospital and has started twice a week clinic meetings.

His counts are going up and things seem good, but now he has lost ten pounds in a week, (they're having him see a nutritionist)

Should I be worried
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Old Thu May 9, 2019, 05:04 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,503

Eating anything, and then eating enough and eating right, can be a challenge during and after a transplant.

Since a nutritionist is going to weigh in, and the doctor considered him stable enough to be discharged, I wouldn't panic about his weight, just concerned enough to ask the doctor and the nutritionist what they think should be done about it, and to pay attention to what happens next.
Founder of Marrowforums and caregiver for my wife
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Old Thu May 9, 2019, 06:18 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 584
That is great news that your father has been released! Great news!

Eating after transplant can be a challenge on a number of fronts. For me, I loved food with a lot of spice and heat, but could not stomach them for months after transplant. I found myself eating and craving foods that I had never really enjoyed like peanut butter and chocolate (i know that I am odd here). The trick is to find the food and drink that works best, and then work on rounding out the diet over time. The nutritionist will have a lot of good suggestions. I totally agree with Neil's assessment - your father would not normally be released unless the doctor felt like he could thrive outside of the hospital, so worry is probably premature. The overall trend on weight and energy is the big concern.

Also, maybe too obvious, but 10 pounds of weight loss in a week usually indicates a dehydration type process as you pretty much cannot lose 10 pounds of muscle or fat that quickly, so make sure that he is getting adequate fluids and retaining them. I had a period of time where I went in every 2 or 3 days to receive fluids until my body was more capable of retaining them.

Lastly, and please don't take this as anything other than a sharing of my own experience, make sure that he gets to all of his appointments as that is the key to long-term transplant success. The doctors saved my butt at least 5 times over the past several years since transplant as they recognized problems that I would normally write off as "just being a little sick". I saw the doctor so much (lots of complications), that there were times that I just didn't want to go - fortunately my father-in-law was tough as nails on me and drug me out of bed to get to the appointments regardless of how I felt.

Best of luck going forward. You seem like a great advocate for your father!
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Fri May 10, 2019, 07:52 AM
shadowii shadowii is offline
Join Date: Apr 2019
Posts: 38
Thanks for the advice guys
You are right about part of the ten pounds dan, he had had fluid overload before and that has been completely finished.
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Old Sat May 11, 2019, 05:09 PM
Emily59 Emily59 is offline
Join Date: Jan 2018
Posts: 9
When I got home post-transplant I still had horrible pain from mucositis and issues with taste. My tongue felt like there was a tablespoon of salt on top. Most everything tasted disgusting. I lost a lot of weight because I struggled to find anything that wasn't nasty. I forced myself to eat something everyday.
Spicy foods were easiest. Coffee was gag-inducing. That lasted for the first 3 weeks at home. Once those problems resolved my appetite improved and my nutrition issues ceased. I wish the same for your dad.
Diagnosed with MDS-EB2 December 2017. Stem cell transplant completed August 2018.
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