[VickiParticipant]

Hi liz,

Glad to hear that SCT was not as bad as you thought. My partner colin is just behind Stephen and we are apprehensive. He will be going to bristol for the first bit then Chen re ham. Any tips you can give would be greatly appreciated.

How are you doing post SCT and did you have many side effects.

Thanks

Vicki and Colin x

[AV8RParticipant]

Liz

Many thanks for your post. One of the benefits of the forum is the realisation that we are not alone with this disease. I've sent you a personal message with my email address. You are most welcome to contact me direct if you wish. I note Vicki's post above and wonder whether you might consider posting details of your experiences.

I attended pre-treatment clinic yesterday and will be admitted on Monday (2nd July). My greatest concern at the moment is my paraprotein level which has risen to 28. I started at 56 and got down to 16. I therefore wonder about the quality and length of remission I might expect.

Lastly, do tell us how you are doing having now completed HDT&SCT some time ago.

Very best wishes

Keep well

Stephen

[LizWoodwardParticipant]

The staff at Bristol were wonderful and my experience was very straightforward. I even got to go home for the first three nights as I live close by. As levels fall you sleep more and more, so days pass quite quickly. The rooms in Haemotology at Bristol are quite pleasant and you don,t really feel isolated. I had difficulty eating and drinking for a few weeks after the transplant, but not really any other side effects, apart from the fact that i was sick quite a lot, but that passes. I was back to normal energy levels about 2/3 months later. My levels were 44 when I was diagnosed and have now levelled off at 4 and I am living a completely normal life now. It honestly wasn't that bad and the sunrises over the Bristol skyline were amazing!!
Bring an iPod if you have one, nice to have your own music and radio, and moist toilet tissues! Let me know if you have any other queries and fingers crossed your experience is as straightforward as mine.

Good luck!
Liz

[VickiParticipant]

Stephen

Best wishes for tomorrow xxx

Vicki and Colin xx

[EttaParticipant]

Thanks for that Stephen, really useful info there.
Etta had her day of chemo last Friday and we did our first mobilisation injections tonight. Had a bit of a shock when the nurse rang up the other day to check the dose and told us it was 3 a night not one!
Thankfully all went well (we hope so anyway), only another 12 to go until we head back to Blackpool on Monday.

Will keep you all posted, been a bit hectic lately leading up to his with appointments galore so not had chance to catch up on the site much (although Etta reads it regularly – still can't get her to post yet 🙂 ).

Talk soon,
Craig

[ElizellenParticipant]

Hi Stephen!

I don't know if you are able to get online from hospital, but realised you must be a few days into your SCT by now and hope all is going uneventfully for you.

I had mine in Aug/Sep 2010 in Bournemouth without too many problems and am still in complete remission, with now no medications apart from a monthly biosophonate (sp?) infusion and daily calcium pills, so hope you achieve similar results

Best wishes
Eliz
XX
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[AV8RParticipant]

Thanks for everyone's kind words. I you wish to follow my progress I have started another discussion "Bristol SCT"

Keep well

Stephen

[Author]

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