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Appetite recovery

Hi all. I am appx 18 months post Bmt. Since my Bmt my desire for food has not returned, or my want to eat. When I had the Bmt I had stomach pains and could not eat. I had a feeding tube but could not accommodate the volume without giving me severe nausea. In the end the tube was bouncing around my throat and caused me to vomit so it was removed. I then left hospital while I was still losing weight. I eventually put on weight by forcing myself to eat more and more. I have had gvhd of the osophegus, mouth, liver, and my desire for food has remained the same I basically have no desire whereas before I loved to cook and eat. I don’t even seem to ever feel hungry even if I don’t eat. Has anyone ever suffered this from Bmt up until months later? Did this ever go away? Not sure if this is damage from chemo? Or a form of gvhd of the gut? Any similar experiences appreciated. Thankyou all.

Comments

  • Hi Dave T

    Gvhd bowel, skin, Appetite is abismal but think its multifactorial, skin gvhd which makes my mouth totally dry, not able to chew, the chemo before the transplant probably damaged a lot of cells (16 months ago) which haven't had a chance to recover cos of gvhd.

    I do the same, force myself ( take mcp too which helps) lots of very small teaspoon portions every few hours seems best.

    Favourites, finely chopped mushroom scrambled egg with dash of cream and sprinkle of veg stock, bananas and custard, custard and grated apple, fried grated carrot and courgette with scrambled egg cream and veg stock or just a bit of salt, veggie consommé with thin soup noodles, banana and tahina shake with full fat milk and cream. , ... but favourite isn't true, they're just bearable. It also helps me to imagine fancy names for the food.

    let me know your 'favourites'.

  • Hi Helen,

    It's Tom in the Anthony Nolan Patient Services team here.

    Just to reply to your question:

    BMT = bone marrow transplant

    Sometimes we also use SCT = stem cell transplant

    So many acronyms! Hope that helps,

    Tom

  • Hi Helen,

    are you saying you had / have the same that 28months on you still have / had no desire to eat and just ate / eat because you have to. ? If your gut recovered how long did it take? I understand it is different to everyone. Do you think after my gvhd goes that my stomach will recover? I do admit that the conditioning chemo and my Osiris did affect me really badly and I was quite weak when I had the transplant as at the time I had just had a secondary cancer on the spine and had spinal compression in Jan2021 , then had chemo for this, than got sepsis, went to icu, then got bed sore on sternum size of tennis ball, then one month later had bone marrow transplant and 6 months later bad g had which I am still recovering.

  • Do you think after my gvhd goes that my stomach will recover?


    I can only speak for myself, I had acute 4th grade bowel gvhd already a couple of weeks after sct (6.21). My bowel gvhd has recovered, but I'm still on jakavi 10mg 2x /day and 5mg cortisone, and myfortic, but the bowel is no longer the problem at all, it's now skin gvhd (mouth, ankles, eyes). I'm forcing myself to eat, have no hunger symptoms(just get phenomenally weak , fatigue, when I need to eat). By going on worst case scenarios, it might stay like this, it might get better, I'm not 'hopeful' as such, accepting it the way it is, and trying to make the best of a bad situation is all I can do, maybe it'll improve, maybe not. The word acceptance seems to have become my friend, I have developed animosity to the word hope.

    Eating has become easier. I'm more creative with what, when and how.

  • Hi. Many thanks for the feedback. Your food / apetite symptoms issues seem the same as mine. I wonder if it was due to the pre-conditioning for the transplant, whether it is the gvhd or the steroids. I think maybe with time some normality will come back when the gvhd all but goes and can stop the steroids to give the stomach time to recover as it is still going through so much. I did find a gvhd group on Facebook where there seems to many people reporting their gvhd symptoms many being from US, which has made me realise I am not alone with my gut issues or scleroderma issues. Hopefully we will all improve with time but I see often it can be a long road.

  • Hi DaveT

    "Hopefully we will all improve with time but I see often it can be a long road."

    In the mean time I'm just trying not to lose weight. I use energy powder for cancer patients, I get it on prescription here in Germany.

    A little recent discovery is frozen boil in the bag Creamy chicken. Very finely diced chicken and vegetables in very wet Creamy sauce. It's 450 g. I boil it up in the bag and keep it in a covered bowl in the fridge. Over a day or two I eat it in tiny tiny portions, heated in the microwave with added cream and a spoon of rice (I prepare that in one lump too) . I'm on the look out for similar alternatives, it certainly saves my energy preparing my food.

  • Hi Dave

    How's it going with the eating, food, weight?

  • Hi Helen. Hope you are holding up ok. Unfortunately my diet situation / apetite has not changed. Ever since my sct /Bmt when I had mucousitus my desire for food has not returned and I don’t really ever seem to feel hungry. There used to be foods I loved or felt crazy for and now I never get those feelings / desires. We are now roughly 18mths post Bmt and this has not changed but I believe my stomach may still be recovering from its chemo ordeal or gvhd. I am eating because I know I need to to live. I have a good weight and was putting on too much weight before due to prendisolone. I have improved since my Bmt on that when I left hospital I was losing weight due to pains / uncomfortableness in my stomach but over time this improved a little and I can eat more but not with the love of food I have before. With time my diet seems to improve a little bit at a time managing to introduce slightly more healthy foods than I could before. If anyone else has had similar eating issues since Bmt / sct or after getting gvhd I would be glad to hear and anything that helped them get over thier issues or whether it was just time for the issues to rectify themselves. I want my love of food to return!!!😊

    Dieseldrinker62
  • Hi Dave

    Sounds like my experience too.

    something to add to it for me, I have recently got polyneuropathy and read I should try to eat less dairy and more unrefined cereal. I tried it (müsli) and ended up remembering my bowel gvhd which lasted about a year. My digestion obviously isn't yet recovered from the bmt, at least I found that out with hhe Müsli.

    Things are otherwise hhe same here too. Thanks for letting me know how you're getting on. It feels helpful that I'm not alone. And congratulations for managing to put weight on.

    Best wishes

    Helen

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