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.
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'.
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,
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.
"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.
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!!!😊
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.
Ecp and painkillers seem to have helped my appetite. I'm eating better. Hubby even said he likes to watch me eat.
Preparing food is easier too. I'm still only eating wet food or oily food but it's definitely better.
Pot noodles, banana fritters fried in batter with syrup.
finely chopped lettuce, chard, baby spinach, and finely chopped bits from the fridge with lots of dressing.
Leberwurst with cranberry sauce on bread with lots of butter.
Creamy chive sauce with cranberry sauce on bread. ( white small sliced baguette).
Can't think of anything else,
Watered down multivitamin juice, milk, water.
I hope you're doing better Dave.
My appetite is like yours it has not returned as of yet. Luckily to a degree in the early days of gvhd when I first started taking steroids I was able to eat more even though it was uncomfortable for my stomach. The uncomfortableness has largely over time disappeared but most of the time I have no want to eat. Many days I could easily go without eating without feeling hungry, so I have to force myself to eat. On other notes I had my 2 Ecp sessions this week. I also saw my consultant on Wednesday. I told him how fatigued I was all the time and how difficult it was for me with such sclerotic legs. He got me to now reduce my prednisone from 7.5mg day to 5mg a day, and I am now taking cellcept twice a day 100mg a time. I am now even more fatigued than I was before and walking is still very difficult. So currently still feeling like I am going backwards. I feel currently terrible all the time.
It is so good you have made this step forward and I hope it continues in this direction. Hopefully I may end up going in this direction a little soon.
There's no point wishing to be better. It is as it is. My ankles are terrible, feels like cheese cutter wire wrapped round them.
Thanks for your kind wishes Dave. I hope it stays as it is and not 4 steps back.
I ditched any ideas of what I should be eating and went for the pot noodle, thanks to you! It really helped. I have another couple in the cupboard. It's a little packert and the seasoning, chilli pepper and oil are in little sachets. It was you wasn't it, with the pot noodles.
You're still very early on with the ecp (2nd time, 4 sessions). I think it was around number 20 that I felt an improvement, so that means 10 hospital visits. I didn't appreciate the ecp until I had to miss it once. I'm only just getting back to where I was before the gap.
I'm thinking of you, you hero! Keep at it, we're all doing really well, at our own pace, under our own terrible conditions, in our own way.
sorry did not reply to you quicker as been feeling a bit down with my situation. Feel slightly better in mind but it may be short lived. A little bit of recovery would perk me up a bit. I know it can often take a long time to see any recovery at all. I know by seeing others posts you can be waiting a long time. It is easy to say we need to have patience but to follow one’s own advice is not always easy.
yes it was me who suggested pot noodle as it was one of the first things I could successfully eat after transplant and it is often still the only thing I can eat. I know it is not particularly that healthy but is better than eating nothing. I don’t know if you are aware of pasties, these are handmade like pies with often steak mince in, potatoe and swede. I can often eat these as well. All these carbs not necessarily good. I am so pleased for you though managing to eat more. Is this getting your appetite back? Or managing to force yourself to eat more? They are both steps to recovery. One being a lot closer to normality than the other. I know today you are at Ecp. I hope it goes well. I have actually been going for 16 weeks over 7 months ie 32 treatments. As it hadn’t made much change other than liver improvement and keeping me steady my consultant added an immune suppressant for me ie “cellcept” to see if this would help reduce the tight skin. Let us hope this may have an effect for me. Let us hope the Ecp continues with its success for you. For us both and anyone else taking the treatment.
A new dish I discovered today which is an adaption of the non nutritious pot but very edible pot noodles..... here's how I did it..., a little pack of instant noodles including flavouring and oil in tiny sachets. Make the instant noodles according to instructions (3 mins covered in boiling water). When they're ready add them to a little pan of stir fried thinly sliced baby spinach, thinly sliced carrot, thinly sliced onion, mushroom... whatever you fancy, thinly sliced.
It's super wet, soft and mushy and tastes of something bearable.
Let me know if you can eat it, a bit of feedback:)
I have had endless issues with eating. I got a severe case of mucositis when I had my SCT I'm now 5.5 months after the transplant.
Food tastes different, either of nothing or like it is off. I can't eat most things as the taste makes me gag. I can only manage super noodles, pasta, weetabix and porridge etc. Cheese and chocolate tastes foul which is frustrating cause they were once my favourite. I'm having to up my calories daily with the calorie shakes the dietician gave me.
Finding it very stressful and it is making me feel very down at times. The thought of it being like this for months on end is really concerning me.
Hi Marsha, you'll be pleased to know that your taste will eventually return to normal and all those things you used to enjoy will taste just as good as they did before your treatment. I can't remember how long it took for my taste to return but it was a gradual process. Hang in there and yours will come back too and you will be enjoying chees and chocolate again before you know it.
The shakes, noodles weetabix and porridge are all things that helped get me through these times, and will supplement whatever else you can eat. I did find soft foods a lot easier to tolerate and pot noodles (even though they're probably full of salt and bad additives) were something I ate regularly, even buying in bulk at Costco!
As much as it's not great you had issues too, it is THE best news that others experienced the same thing. And so pleased to here that it will eventually return, sooner rather than later I hope.
Hi Marsha and Steve. I had an sct appx 21 months ago and also had bad mucositus. I left hospital still losing weight as I could keep nothing down. The hospital food I found more terrible than I did before the sct, feeding tubes in my throat made me gag and be sick. I got home and it was hard. No real apetite and all foods rated horrible. . What made it worse was when I got gvhd 6 months later and I was not producing saliva, my throat swelled up so I could not eat anything very solid and started to get ulcers in my mouth. I was not having a good time. I started on steroid mouthwash and steroids and after a time I seemed to produce better amounts of saliva, the sores went down and the steroids seemed to make me eat more, however food did not taste the same. I used to love to eat and to cook and that all went. However over the time till now a lot of foods have started to taste more normal again but my love of food has not returned as of yet but I feel I am gradually getting there. It has been a long hard slog, introducing new foods again but by bit as my palette keeps adjusting, and I feel I still have a little way to go yet. Everything from scd , gvhd and recovery seems to take a long time but with patience we seem to get there. Results rates are different for different people so I hope it is quick for you, however please be patient if it takes a bit longer. I felt at times I would never recover but I am still getting there gradually.