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  #1  
Old Mon Jan 10, 2011, 07:21 AM
Hopez2 Hopez2 is offline
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Trouble Eating after day 100

Hi all. My husband had a stem-cell transplant on Aug 31, so he is about day 120. He has not regained his appetite since the transplant and keeps losing weight. His blood looks great and as of our last appt, he showed 100% donor cells. He did have acute graft versus host in his upper gi tract after transplant, so that could be the cause of his loss of appetite, but just wondering if anyone else has gone through something similar. And wondering how long until he will feel like eating again. Now, he forces himself to eat.

Thanks,
Nicole
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  #2  
Old Mon Jan 10, 2011, 06:45 PM
Ruth Cuadra Ruth Cuadra is offline
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Hi, Nicole.

I remember that it was very hard to start eating again after my transplant. I had to have a morphine drip to control the pain from mouth sores. (Actually, I got dilaudid because I'm allergic to morphine.) It's typical for transplant patients to say nothing tastes good. The various medications tend to make things taste metallic, which takes away any pleasure in eating. I lived on popsicles for a while because the coldness kept my sore mouth from hurting. You might be able to help your husband by focusing on hot vs. cold or a texture he is comfortable with rather than how the food tastes and whether or not he's hungry. Right now it's probably more important he gets calories than a full range of nutrients, so look for calorie-laden foods. Will he drink Ensure? Carnation Instant Breakfast? Either can be served very cold.

There are appetite stimulants that some patients take after transplant. Ultimately, I knew I had to eat in order to be released from the hospital so I was motivated. Since he is unable to eat enough at Day +120, reviewing the situation with a nutritionist at your treatment center may help. You might also consider whether he is depressed as depression can suppress appetite as well.

Hope this helps.

Ruth
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  #3  
Old Wed Jan 19, 2011, 11:36 AM
Hopez2 Hopez2 is offline
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Ruth,

Thanks for your insight. My husband says that nothing sounds appetizing to him. He just keeps losing weight and is very unmotivated, so he very well may be depressed. I ask him if he is and he tells me no and he is on anti-depressants, but I still think it is a possibility.
It's very frustrating to me because things couldn't be going better for him as far as the transplant went and he has no desire to rebuild himself. He literally sits in bed or on the couch all day and watches tv. He says he's tired and I'm not a tranplant patient, so all I can do is assume that he really is tired and not hungry.
I just thought maybe it was normal to still not have an appetite at this point, but you're the only one who responded, so I'm going to guess that it's not normal.

Thanks!
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  #4  
Old Wed Jan 19, 2011, 12:27 PM
Marlene Marlene is offline
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John had to force himself to eat. Nothing tasted good, always had some level of nausea and was way too tired to care. However, he knew it was critical to eat and move in order to get out of the hospital and to feel better. It was a struggle for him. John would tell himself that he didn't go through all this trouble to live and then not do his best to recover by eating right and exercising.

Can you address this with his doctor? Sometimes, just having an eating/exercise target set up by the doc will help. Like daily amount of protein, carbs, fat to eat and 30 minutes of some type of exercise each day. Try not to focus on calorie intake alone. You can get a lot of calories through junk food and that's not the best choice. One of our docs at Hopkins would come into the outpatient clinic and tell each patient that in order to have more energy you needed to spend some energy via movement or exercise. This increases a sense of wellbeing as well as appetite.
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  #5  
Old Thu Jan 20, 2011, 08:21 AM
tserdogan tserdogan is offline
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I remember my 100 day around and my behaviours same as your husband.I ate only ice cream,chocolate and macaroni.My opinion this is normal.Watching tv,playing video games,watching dvd.İf i felt myself good,i could walk at tha park.Dont worry.I hope time will help you.
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  #6  
Old Thu Jan 20, 2011, 09:47 PM
Mary4Mike Mary4Mike is offline
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Nicole,
My husband was similar as far as food not tasting good. He also had a hard time eating because he had very little saliva at first. He only wanted cold food and no bread because it was hard to swallow. Since his transplant (15 months ago) he has lost 40 pounds. He is now at a healthy weight and he is very conscience about not putting that weight back on. He still has trouble with some foods and he always has to have water when he eats.

Return of energy is slow, but he should be showing some signs of improvement. The fact that he is not motivated tends to sound like he has depression. Perhaps the meds he is on for this aren't the right ones for him. Our doctors constantly asked Mike about his state of mind. This is such a big life event that none of us know how we would react to this. His doctors should be told. I have to agree with Marlene that one has to exert energy to build energy. Mike had his transplant around the same time of year as your husband and it was about this time of the winter that he would wrap a scarf around his face and walk around the block. At least when he was tired, he felt he had a reason. Perhaps his doctors will have suggestions - I am sure they have seen this before.

I wish you and your husband all the best with this.

Mary
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  #7  
Old Sun Jan 23, 2011, 09:40 AM
launch launch is offline
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Nicolette,

What I have learned with my husband, although he has not had a SCT, during induction chemo, there were times he seemed as he wasn't engaged. He would do things for himself. Although I would tell things that would help him, seemed he didn't "hear" me... I talked with the doctor in private, and when Ron heard the same thing from the doctor, he "heard" it.

It was just a matter of hearing it from someone of medical authority.

God Bless,
Cindy
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  #8  
Old Sun Jan 23, 2011, 01:36 PM
Marlene Marlene is offline
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It may be worth asking his doctor to check his thyroid T3,T4 and TSH levels as well as a male hormone panel. His endocrine system could be disrupted from the transplant which can contribute to his symptoms. It's worth exploring.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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