Life after a SCT - A Survivor's Guide

Hi Jaymacab,

Daughter tried to build up a bit, knowing she’d lose some ground, ate healthily but also had the naughty extras we all normally try to avoid, cream buns and stuff! 

I suspect supplements really need to be checked over with your team, and those which might be needed like nutrition drinks, would get prescrived by the dietician if they are needed.

I’ve heard too, that turmeric is a useful culinary spice to aid cancer-killing drugs but for cancer-relieving alone might need to be in large quantities, probably not that palatable! 

Hugs xxx

Hi I'm just over 5 months on and not losing anymore weight but not putting any back on ,though I haven't been weighed since 29th Jan. I'm back in my old clothes as I purposely put weight on before SCT I was 63 kilos, I'm now 53 kilos. I am still having the odd night where I'm sick all night, then I'm tired the day after then after that I feel much better than I did before. It's very strange I went to Zumba this morning and was as fit as I was before I went in. I had a slight cold a few weeks ago followed by shingles. But I'm fine now, I just have a bit of phlegm that bothers me late afternoon till I sort it. I no longer feel like I've been kicked everywhere and my jaw feels better. My teeths sensitivity is much better thanks to Colgate and I'm eating much better.

As for clothes the waist has gone two sizes, I've bought a few new ones. Though I'm doing Zumba 4 sessions a week most weeks, I still need to build the muscles up in my legs and arms. I feel very well may it continue

Sue 

After my allo I seemed to feel the cold more. Wondered if it was due to loss of weight or change of metabolism. Spent all summer in fleeces and woolly hats. Eight months on I'm back to normal- ish though not put on the weight. So guess it was metabolism.

Tessa

Ooooh, yes, Tessa! 

Daughter got home partway through October and even when we all piled up there for Christmas, she had heating full on, wood burner going full blast, a fleece round her and wearing lots of jumpers, we were in tee shirts taking time out to pop outside to cool off!!!!!!

I suspect that it affects your internal thermostat! 

Hugs xxx

Lol moomy, when I was in hospital over this past New Year with Pneumonia I just felt so cold in my little aircon room so I had a fleece and blanket round me. My wife came in and proceeded to remove all her layers then my nurse came in and did my obs then proceeded to remove my blanket, gave my fleece to my wife to take home and turned up the aircon and went and got an electric fan.......... I was absolutely frozen for about 3-4 days :) :)

Yes, of course we did check daughter’s temp! 

But we had all this with son as a baby and toddler, he used to get febrile convulsions and so getting calpol or whatever into him, often antibiotic but then a warm bath and a fan in his bedroom was the way to get his temp down! 

So I sympathise with your memory....

Hugs xxx

I came across this during a desk tidy today so thought it would be interesting to put up on this thread but remember your own SCT Team will have their own Vaccination Schedule.

I do hope you are having a relaxing Saturday but as the Scotland v England 6 Nations is on I think its not going to be ;)

Thanks Mike,

But of course most SCT units will normally send their schedule straight through to the patient’s GP. 

It’s really useful to have it ‘on file’ though.

Hugs xxx

That is very true moomy and yes my schedule was sent direct to my surgary who are very good but with the amount of letters and reports they get in I still had to prompt to have all the vaccinations done at the correct times.

Hello all

Today I had an outpatients review with a different doctor, and I learnt a few things, or maybe I didn't quite absorb them first time round. He said that if we have any problems in the body, that's where GvHD is most likely to strike. So dry skin may attract it there, or drinking alcohol may attract it to the liver.

I am 9 months post allo transplant. My overall chimerism is still over 90%, but my T cells which are a particular component seem to have gone down from the 80s to the 70s despite having a top up of stem cells (donor lymphocyte infusion). They took another chimerism test today and I'm due another DLI in six weeks. They measure my immunity with something called a CD4 count. Seems mine has gone down a notch from 0.23 to 0.18. Normal is 0.3. So still on neutropenic diet, boiling drinking water, not allowed to do gardening and be careful of mixing with people. (I have to say I have started visiting gardens as a substitute to getting my own hands dirty.)  It's all very complex and I don't really understand it all. I'm just telling you so you might see what to expect at this stage. Those further down the path will know!

I got into conversation with two people in the waiting room. One had his transplant eleven years ago, and still has to do outpatients every month. In my limited experience this seems unusual, as I have spoken to people with much more recent transplants (and on this forum) who have dropped to six weeks and then 3 months then 6 months.

Another person was 22 months post transplant (very precise!) and was doing well until last autumn. Then an infection put his chimerism down to 8% and he needed a large DLI and then had GvHD.

I hope that doesn't scare people. But it just shows how individual each person's experience is, and what a rollercoaster it is (as Highlander often says).

Tessa