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Old Fri Jul 21, 2017, 05:17 AM
Eva's daughter Eva's daughter is offline
Join Date: Oct 2016
Location: Perth, Australia
Posts: 23
Day 30 and hasn't eaten for 10 days constantly nauseous

Hi everyone,

Mum has engrafted and whilst her numbers are going up she hasn't been able to eat a thing because of nausea and constant vomiting (dry reaching) ... she had a biopsy of the intestines done and results came back that it wasn't gvhd. Does anyone have any idea what it might be? She is super weak and closing her all the time. She was actually discharged a week ago but we had to take her back with a high temp. There are no infection markers either.

Anybody experience anything similar?


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Old Fri Jul 21, 2017, 03:35 PM
rar rar is offline
Join Date: Mar 2014
Location: colorado
Posts: 211
You are lucky that she does not have GVHD. 10 days without eating is not a big deal, I went for 3 months without eating or drinking. I only lost 60 pounds. I was on IV for the whole time. If you are interested in what my first 16 months were like see http://forums.marrowforums.org/showthread.php?t=5217 It's been 3 years and I am still doing OK with some moderate issues. Oncologist thinks I am doing well. He said it is nice to see me as I am a good example of a success story.

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Old Sat Jul 22, 2017, 10:48 AM
julieme julieme is offline
Join Date: Dec 2016
Location: Monona
Posts: 13
Maybe normal

My husband had similar. Took mental "steel" as he put it to eat 3 yougerts a day. He was on IVs so dr not too worried. Took 3 months before he was back to eatting normal.
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Old Sat Jul 22, 2017, 05:30 PM
Callie Callie is offline
Join Date: Jan 2014
Location: Fayetteville, NC
Posts: 23
Dad's eating & drinking habits...

Eva's daughter - Dad (Bailie) also had a hard time eating and drinking until about Day +45. It took a combination of Zofran and Compazine (anti-nausea drugs), finding the right foods - everything tasted like "dirt clods and cotton balls" (we went to the store and bought one of just about everything, to see what he might like or could stomach), and finding the right drinks - he dry heaved every time he attempted to drink water (for him, pineapple juice, Sunny Delite, and rootbeer worked the best). Once his taste starting changing back to normal, eating and drinking also were so much easier (about the Day +30 time frame, he really scrubbed his tongue - he felt like there was a coating from all the drugs on it. This helped tremendously!). Also, we knew his taste would change. What we didn't expect was how much his sense of smell changed - he could smell everything and it affected his appetite/nauseousness. Buying detergents, soaps, etc., with no scents seemed to help as well.

I'm wishing your Mom, you, and family the very, very best in her journey to Day +100!! Remember - it's nonlinear. Don't get frustrated with minor setbacks, but look for each week to be a bit better (that might be relative) than the last.
Daughter of Bailie (diagnosed RAEB-2 11/13; transplant 08/14; relapse with Ph+ AML 04/15; remission until 04/17; DLI 06/17; passed away 07/11/17 at Day+1059)...the best dad a daughter could have...
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Old Mon Jul 24, 2017, 06:46 AM
Eva's daughter Eva's daughter is offline
Join Date: Oct 2016
Location: Perth, Australia
Posts: 23
Callie. Bailie has passed! He was so very helpful to me on these forums. What an informative man with from what I gather a very positive attitude. I am very very sorry and sad to hear this news.

Mum had an endoscopy done today and they took 5 biopsies to see whether it's gvhd.

Mums platelets also dropped from 217 to 50 in a day today so I'm very anxious.

Well done you for living with MDS for such a long time... my mum was diagnosed I think last August and since then I've pretty much been a wreck and very paranoid about things.
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