[tallulah55Participant]

Hi

Pleased to say Kevin is doing really well after his SCT and I would say overall things have gone much better than we expected so far. He didn’t really have any side effects until Day 8 and I will probably post details in the next day or two as they may be of interest to others.

I have just added up the number of meds Kevin is having for different things and it’s 13! Hopefully he will come out to our halfway house in a couple of days when neutrophils reach 1 and then home finally on Friday.

As Kevin’s consultant said to him beforehand ‘you will go into sepsis’ he has been determined to prove him wrong and despite a temp spike the other night ( and increasing levels of the inflammation marker C-reactive protein) so far he has not!

I’m delighted to see that the nausea he has had over the last two days although manageable with anti-emetics has meant for the first time ever Kevin is enjoying iced plain water and long may that continue.

[simonParticipant]

THIS IS MY FIRST POST,,,,,MY STEM CELL TRANSPLANT IS DUE AUGUST,,IM GLAD YOUR DOING SO WELL,,AND FIND YOUR POST ENCOURAGING,,IM QUITE SCARED BY THIS PART ,,THANKS,,,,SIMON[53],,,,

[tallulah55Participant]

Dear Simon

I think we all inevitably have some anxiety about the unknown but I think you will find a lot of  posts on this site about people’s different experiences of SCT. The more informed you are, particularly about preparing practically,  hopefully that will allay your concerns to some extent. Hopefully you also have a specialist nurse or transplant coordinator who can answer any queries or worries you have.

I certainly worried more about Kevin when he had pneumonia in the winter and was very ill than over the transplant now- the transplant teams are so used to dealing with all the side effects and watch for the slightest signs that you need help  and have effective drugs at their disposal if you do need support.

For us there has been a couple of real positives- firstly when the stem cells were transplanted when there was a sense that ok treatment is over, now the recovery starts, to when the neutrophil count started rising slightly two days ago, this was a very exciting moment.

I would guess that Kevin found the constraints of having a broken leg 2 years ago more frustrating than this, he probably found induction therapy harder at times than the effects of the melphalan in SCT and knowing what to expect has been important yo us both. Kevin is 66  and only has one kidney so there were some initial concerns about his suitability for the process but I would say the worry about the process hasn’t been borne out by the experience so far.

I’m sure all those who have  experienced SCT will be  happy to provide  you with whatever specific concerns you have Simon and  meanwhile my dear husband looks forward to coming home and to being able to enjoy the football and Wimbledon as he gets his strength back!

with best wishes

Nicki

[rebeccaRParticipant]

Hi Nikki, that’s great news – had my SCT at Xmas and I never got sepsis either – guess they just try and forewarn you but I think in this game it’s better to just get on with it and see what happens as we are all different.
Hi Simon, Don’t worry about SCT – had mine at Xmas ( stem cells returned on my actual 52nd birthday!) back to normal, all Ok, no long term after effects at all – cept the hair loss!. I think the younger you are the easier it is on your body and whilst I won’t say it’ll be a walk in a park but I do think you’ll go through it and wonder what all the fuss was about. If you have had CDT I think some have said this a tougher regime – I think a lot is made of SCT but really it’s just another treatment and you’re young enough to shrug it off quite quickly. SCT is not nice – neither are any of the treatments but it’s doable and forgettable. After SCT and being drug free and the prospect of a longer remission makes it all worthwhile. Stay strong and focussed.

Rebecca

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