[kempyParticipant]

Hi,

I was diagnosed in November 2013 and had SCT in June 2014.

I was fully advised that I might feel unwell and I was braced for it being quite unpleasant. Hmmm, well, it wasn’t. I certainly lost my appetite but it wasn’t awful, not at all. I was allowed home after about 2 weeks. Though I tired easily at first, as weeks went by, I felt largely normal. So far (touch wood), all is well and I remain in remission. Long may it continue 🙂

I know for many SCT, isn’t much fun but it isn’t inevitably bad, plus the trend soon becomes, feeling better and better.

Good Luck

Steve

[kempyParticipant]

Hi Brian…..I had a SCT in June 2014 after treatment brought me to remission. Touch wood, all is still well and life is good. I’m on low dosage Lenalidomide maintenance under a trial. I know it varies so much but my experience with the SCT was so much better than I expected. Although I had tiredness and presumably lower resistance for some time afterwards (months), I very soon had really good quality of life. Sorry, I don’t have specific measurements, I usually only listen for OK/Fine……but my views of all aspects of SCT (before, during and afterwards) are only positive.

Good Luck!

[kempyParticipant]

Hi Steve……I had a SCT almost exactly two years ago at the Christie, Manchester when I was 64, in other respects, reasonably healthy and, so far (touch wood), I’m still in remission.

Everyone advised me I could feel pretty unwell and I was braced for something much worse than actually  happened. I was out after 14 days. I had some nausea during the reintroduction of my stem cells, I certainly lost my appetite but otherwise I was OK. When I got home, I was fine, apart from tiredness, which gradually wore off. My quality of life has just got better and better (again, touch wood!!).

I know I may have been lucky but perhaps it shows it’s not inevitably a bad experience.

Good Luck 🙂

[kempyParticipant]

Hi Sally, I’m certainly a ‘New kid on the block” when it comes to posting replies……I thought I’d successfully posted this yesterday….but apparently not 🙂

Your situation seems similar to my initial diagnosis. Radio therapy was considered for my plasmacytoma                                                                                                                                                                                                                                                                                                                                                                                                        but when they detected it had spread they opted for treating the whole underlying MM. The first month or so was an emotional journey for me, with mostly downs but occasional ups. I suppose I didn’t feel any loss of control  because I largely just took the guidance of the consultant and team, they took me through the choices. I went on the Myeloma XI trial. That was about two and a half years ago. The initial chemo treatment went well…no real problems apart from the dexamethasone making me a tad hyper to start with and a tad depressed when stopped. June 2014 I had a stem cell transplant. I’d been forewarned that I may feel pretty unwell and under the weather for maybe a year, well,  I was lucky, for me it wasn’t too bad at all….now (touch wood), I’m still in remission and feel great.

There are so many good things happening medically and the existing armoury is already extensive….your consultant can describe what’s available…..lots of possibilities….the future doesn’t have to be bleak. Good Luck!

[Author]

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