Hi,
I had an allogeneic stem cell transplant at the beginning of January 2025 to hopefully cure myelofibrosis. The transplant seems to have gone well and my blood counts seem to be recovering slowly, but as expected.
Following the transplant I had bad mucositis in the hospital and couldn't eat. That cleared up quickly, but I have (mostly) lost my sense of taste. This has made it difficult for me to eat and I have lost quite a bit of weight. Savoury food smells and tastes disgusting, but I find that I can tolerate sweet foods such as ice cream, custard etc. My sense of smell has however greatly increased which has made the problem worse becase the smell of food, especially cooked food, is overpowering and puts me off eating.
I inderstand that this is a common problem, but I don't have any idea how long it will last. Can any members who have had this problem please let me know how long it typically took for their sense of taste (and smell) to return to normal?
Thanks, that's reassuring 
I'm looking forward to being able to stuff my face to get the weight back on 
Hi redmelons and a warm welcome from me to this corner of the community.
Like Nick has said this unfortunately is very common.
I have had 2 Allo SCTs (June 2014 then again in Oct 2015.
I did not have any significant mouth problems with both my Allo SCTs and no eating issues after my first Allo SCT but my taste buds were shot….. and yes to the metallic taste following my seconomic Allo SCT.
It’s now 9+ years since I went through my second Allo and this was he worst but I just asked my wife and she recons it must have taken a good 6-7 months before I was completely over the issues…… but we also put the problem down to the smell and taste of the Cyclosporin……. and once these were stopped at day +196 everything improved quickly.
My SCT Specialist Nurse kept banging on about us looking past enjoying food…… it was all about getting fuel into my body so I was having little and often high protein foods.
Lets look for things to improve soon.
I was only ever sick once during both my SCTs and that was the night I got the first set of my brothers Stem Cells for my second Allo.......
I ended up in CCU as I was so sick my heart went crazy and also developed a Hiatus Hernia that is so big that it actually fully encloses around my stomach and my Pancreas...... so this did not help with eating issues in the early days (See my story)
But once I got home and had to take the evil Cyclosporin capsules my mind said I was going to be sick every time I put them near my mouth...... this was hard work.
For the first few months post my second Allo I was actually living on regular (every 60 to 90 minutes....... my wife had alarms set) small cups of good quality liquidised homemade soups with lashings of double cream and scrambled eggs in the morning with some cheese mixed in with it.
Then I moved on to have some mince, mash potatoes with cheese and double cream....... I also liked suet dumplings that had been cooked in the mince...... soft food was easy to eat........ then one morning I woke up and asked for a Bacon Roll and that was that!!!!
I had a lot of chemo (750+ hrs) leading up to my first Allo SCT....... the one thing that helped me with regards to the metallic taste was fresh pineapple that was put into the blender and blitzed then put into ice cube trays and frozen and I would suck on a few cubes before I had any food.
Fortisip Compact Drinks made me feel sick...... oh it can be ever so different from person to person.
