Stem Cell Transplant

Its been 7 weeks since Transplant. Appetite is really poor and taste buds still damaged. Dry mouth also. On a daily basis I would have ensure 2cal supplement drink, an egg, slice of ham, small potato, yogurt, few cups of tea and pint of water. Tummy is rumbling and I know I should eat but hard to stomach anything. Have lost 1 stone. I don't exercise too much as exertion causes dry mouth.  A slow walk most days. Haven't discussed poor diet with  team as blood counts are fine and that is what they mostly check. I am wondering how long I can carry on like this.

Hi Josh,

Really sorry to read what you are going through. If you are in any doubt at all, definitely discuss it with your medical team. I lost a significant amount of weight after SCT and was under the guidance of a dietician for about 6 months. I was quite underweight at one point and really struggling mentally with eating. It is all about slow steps, introducing new foods slowly, trying to get as much high fat food in small quantities as possible. It’s fair to say your system can get messed up after SCT - mine is still not how it was before after 3 years - but it does get better, but it can take time. But I’d definitely mention it to your medical team as they’ll want to know if your weight is not where it should be and they should be able to give you some ideas to make it better.

All the best

Greg

Hi Josh,

Just want to agree with what the guys have said. I had a year between my Auto and my Allo and I honestly don’t think my taste returned to normal. I was fortunate to keep a good appetite though so if your only able to manage small portions it’s important you get the right things to give you as much energy and goodness as possible from those small amounts. Ask your team to refer you to a specialist who can advise on what might work best for you. 

Good luck

Regards

Mark

Hi Josh, with Greg on this. You do need to talk with your team and get some professional support.

I was under the care of a Dietician throughout both SCTs, I was ok after SCT number 1 but had a hard time eating during and following SCT number 2 so had monthly meetings with her post SCT for about 6 months.   

I lost 27kgs (4.35 stone) during the process and have now put about half back on.......this is not a sprit but a marathon...... on the day I left the unit  my head SCT Consultant clearly told me...... “going through SCT was like doing a boxing match and a marathon every day I was in hospital and this was done without any training......... so the recovery will take time - be patient........ and keep telling us what is going on as we can’t do anything to help if we don’t know”

Talk with your team and get some help.

Hi Mike, 

That is a lot to lose, even for a big Highlander! 

They advised me to expect to loose about 10% of my weight and I thought I was doing well and had actually put on weight.  They’ve cut my steroids down though this week and without the water retention I’ve lost about 5kg so far. Taste is a big issue and I really can’t taste much so try and eat things which are quite sharp or zingy just to give the taste buds a bit of a wake up.

 Just ventured for a walk to a Costa for a full fat latte and sausage sandwich so hopefully won’t loose much more weight anyway.

Regards

Mark

Hi Mark, yes, at the start of my main treatment (start of 2014) I was 114 kg (6’) and well built. Not a lot of excess weight, could not pinch the inch but a lot of muscle and I went down the 27kgs and two trouser sizes in the matter of 3-4 months. The muscle has not come back but I have went back up one trouser size.

I had no trouble with taste all through my main chemo and first SCT but the second SCT did kill off my taste buds for a good 3-4 months and I think it had started to recover during this time but I was still living on bland soft food, then one morning I woke up and just wanted a Full Scottish.......with double haggis!!!!!! and that was it.

Following the Melphalan I was so sick that I developed a “very impressive Hiatus Hernia" and that was another reason for not eating, but I have not had any surgery and it has closed, healed with no visible signs and I have no issues with it. 

What we go through to keep these bodies going.

Hi Mark,

i started off at 80 kgs and went down to 60kgs which was not good for someone who is 6ft tall. But it’s all come back and more - I’m pushing 90 kgs now - I took the dieticians advice to eat as much fatty food as I can a little bit too literally!

Greg

Hi Mark,

daughter always found it hard work to put on weight, but before she went to Russia to present some tv she dug out the dress she bought for our son’s wedding and it was a bit too tight for comfort! And that’s 3-4 years ago. She still looks slim and very well but I suspect has hit the 40 year old slight mid-line spread! 

Hugs xxx

hi all,

a lot has happened sine my last post on 4th july. I got a lung infection and ended up in ICU on 11th July. Was sedated for 5 weeks and almost died. The medical staff could not identify the infection as nothing grew in the Lab. I was pumped full of anti biotics and managed to pull through.

spent a furter 8 weeks recovering on the oncology ward. Lost lots of weight and also leg muscle power. Dischraged on 16th oct and have made good progress at home. Taste buds have recovered

I have a problem with feet and ankle swelling. I take Valtrex and Septerin daily. Can anyone suggest why the swelling?

Hi Josh, so sorry to hear the journey you have had but you are still around and on the mend.

I have no idea about the swelling but you could try putting your questions to Jane, our Nurse who has experience in Stem Cell Transplant and post SCT aftercare.

Just follow this link below

https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/transplants/discussions

I do wish you all the best with a lot less bumps on the road.

Edit - I just noticed that Jane is now on holiday but do post your questions as she will puck up on your post at some point.