[kitsonParticipant]

hi, I was diagnosed in July 2016 with light chain myeloma. I have had 6 rounds of vid treatment and now going to have a stem cell transplant on 13th march. I am really anxious about it, is it as bad as everyone I’ve spoke to says?

[gcoulterParticipant]

Hi

My wife had her stem cell transplant in September after 6 rounds of VTD. Like you she was dreading it.

Whilst it is different for everyone, and my wife did have a tough few days, we would say it wasn’t as bad as she had thought. Perhaps this was the effect all this information had, when you are built up to expect the worst, then it usually never ends up as bad as you thought.

Edel was in hospital a few years ago with pneumonia, which is how they discovered her myeloma, and she found this tougher to recover from. She also found some of the VTD cycles tougher than the transplant, the neuropathy, the effect of the steroids etc.

Even afterwards we were sceptical when the consultant said she would bounce back quickly enough. Her recovery has been great, we enjoyed christmas and treated ourselves to a week of winter sunshine in Tenerife earlier this month. She was even able to go to a friends wedding in December, something we had ruled out pre transplant. One of the little things my wife “enjoyed” in November, was not having a hospital appointment for 4 weeks!

Don’t fear, if you’ve managed to get this far, you will get through your transplant fine. Think of it as the beginning of the end.

I’ll finish off with a quote I gave Edel at xmas from her favourite film, the Wizard of OZ,

“You had the power all along my dear”

 

Graham

[kevinParticipant]

Hello

I was diagnosed in 2006. In that time I have had 2 courses of CDT and 2 SCT. They gave me about 4 1/2 years remission each time. (Just found out last week it has started to return). As has been said there are no set rules and everyone is different. Even my two treatments varied. One CDT ok and one not so good. One SCT ok and one not so good. Even the same person can experience differences. The not so goods were doable. I also went into my first SCT with all the possible side effects on my mind. In the end it wasn’t too bad at all. The second one I was not too concerned about because the first one had been ok. This was worse than the first one but perfectly doable. I think I was probably spoilt by the lack of side effects during the first one. I can say that both were worth doing for the complete remission they gave me. The hardest thing I found with both SCT was to keep myself occupied so take a few things in with you.
After your 6 rounds of VDT this is another 2 to 3 weeks then you are there.
Best wishes
Kevin

[kitsonParticipant]

Thank you so much for telling me about your wife’s transplant, it really has put my mind at rest, like you say, all the information given is frightening at the time ( especially as I had never heard of myeloma!).

The vtd cycles got worse the more I had, the steroids really aggravated my stomach when on them and neuropathy in my feet is still there tho hopefully that will get better as time goes on.

Hopefully I won’t be in hospital too long, the stem cell team say 2-3 weeks as long as no complications. I am so pleased your wife is doing well after her transplant and hopefully she will have many more years  of enjoying holidays etc.

[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

[deanParticipant]

Hi

I had my first SCT 2 months ago. I was expecting all these bad things to happen and fortunately it didn’t happen . I was not even Sick. Did not fancy food for a few days but got through it ok. The worry was the worst part for me.

All the best

Dean

[specofsandParticipant]

<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>Hi Kitson,</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>I was diagnosed on 19/01/16 just short of my 63rd birthday & underwent 6 cycles of VTD followed by a SCT at LRI.</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>I was discharged from LRI, following the SCT, on 12th Oct.’16 after 10 days!!  I was so pleased to be going home & with getting off quite lightly with regards to Melphalan side-effects, I actually had no mouth or throat sores, no sickness & came out of hospital the same weight that I went in!</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>I was told I probably came through the SCT relatively well because I was quite fit & active & used to a good balanced diet, though I have always been a great advocate of  ‘a little of everything & no excess’.</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>I believe we are told the, almost, worst case scenario though all the negative side-effects they tell us about are possible & some SCT patients do have a horrible time. As said previously we all respond differently, my best advise is to be as active as you can with regards to self care & movement around your environment & follow the advise of the experienced staff as they have helped many people through SCT treatment & have a wealth of knowledge.</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>On reflection what was the most important item I took into hospital with me? A small tub of Sudocrem, the backside got very sore & tender, for me a must have!</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>I really do hope your stay in hospital is as short as possible & not too difficult, all the very best.</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>Ian.</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”></p>

[specofsandParticipant]

I have absolutely no idea what happened with my posting above? I hope readers can still work out what was posted, very strange.

Ian.

[louishenryParticipant]

Yes the SCT is horrible but only for a few days. You might be in for three weeks but it’s only a few days in the middle when you feel really rough.

[Author]

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