Hello

Hi Jeanny. Yes it does seem daunting. They give you all the info about side effects etc and your left thinking omg what have I got to look forward to. I know. I've been there. I had a stem cell transplant in 2022. Peoples experience of side effects vary. I can say the most common are fatigue , diahorrhea and mouth/throat ulcers. The rest is things like low counts (blood) potassium levels low neutrophils low etc. Possibility of infection. Se people experience loss of appetite or inability to taste properly. Most people don't get all. I had low potassium,  diahorrhea, mouth and throat ulcers  slight fatigue and low neutrophils. All eventually settled down and returned to normal  The worst for me was the diahorrhea . You get treatment for every side effect that you might experience.  You will be in good hands . Try not to worry too much. It's not as bad as it seems. Obviously you may lose weight and when you leave hospital you will feel tired/fatigue. Take your time rest as much as you can . Take short walks and be mindful . Your immune system will be like that of a baby. Brand new. Rebuilding itself. I hope that helps

Hi Jeanny and welcome to the community. I have a different blood cancer but have had two Allo (donor) Stem Cell Transplants (SCT)….. the second was back in Oct 2015.

I turned 67 last November and I am living as good a life as any 67 year old can live…… this is SCT fir you.

You may want to check out our dedicated Stem cell transplant support group where you will connect with others who have navigated the same journey.

Hi Jeanny. I’m sorry to hear about your diagnosis but glad it was discovered before things got even worse. I had my SCT almost 4 years ago but I had only 18 months of remission. However, my current treatment is working well and I live a fairly normal life. 

Be prepared but don’t be anxious about side-effects. You may have none. Prior to my high dose chemo I was given ice lollies to suck for 30 minutes. I never had mouth ulcers although my mouth was tender at times. Do the mouth washes religiously. I never had diarrhoea but occasionally had nausea for which there are tablets. My biggest problem was exhaustion and general weariness, especially during the first 5 days. I had taken things to do but I didn’t have the energy or alertness to even watch TV. Most of the time I lay on my bed listening to music. I lost my appetite but always forced myself to eat something. I always showered and got dressed. Things began to improve from day 6. Hair loss began on day 10. Got home on day 15. My discharge notes stated that my treatment was “grossly uneventful”. Can’t say I often felt that.

To care for your mouth, avoid food that is hard and crunchy, like toast and hard biscuits. Watch out for meals that require a lot of chewing. There is a danger of biting a cheek or lip. Mince rather than a pork chop is much easier. Another thing to watch out for is hot drinks. I very quickly lost my taste for tea and coffee especially when I realised that I could scald my mouth with hot liquid. I eventually got into the habit of having a berry tea drink that had been allowed to cool. 

I wish you well when the time comes and that you’ll escape with only minor side-effects.