[briananParticipant]

I am still having chemo. (VCD) and looking ahead to probably having an SCT. I’ve been very lucky with VCD – it’s worked well and I’ve had minimal side effects.
I would be extremely grateful if anyone who has already had an SCT could tell me how effective it was in reducing the key measurements such as paraprotein, light chain ratio, light chain kappa, kappa lambda.  (These are the figures I usually focus on but maybe there are others I should be thinking about?)

Many thanks in advance for any replies.

[davidbrParticipant]

Hi Brian

I had my SCT in Dec 2013 after being diagnosed in May 2013 and I have never looked back. It took 9 months to a year to recover but recover I have. On my last vist to my consultant in June this year he atually said I was cured. He was quotting an America medical paper which was saying they had cases of Myloma patients who had been in total remission since their SCT. This has been my experience I am now in total remission with all mesurments normal. I am just doing a blood test every 3months with 6 monthly vists.

I am obviously suffering all the after effects like 2 crushed vertabra and back pain. And things I did in the past can now seem quite difficult although I am not sure is this is old age (I am 61) or the Myeloma SCT treatment which have caused this. Plus I get lots of strange little joint pains etc.

But I am almost back to normal what ever normal is.

Hope this helps and the SCT goes well.

Best Regards David

[billcrunkParticipant]

Hello Brian – just replying on behalf of my husband who had 1st SCT in Feb 2010 at age 63 following 20 sessions of radiotherapy (for plasmacytoma- tumour type of thing)and 6months chemo (CDT). This was very effective with few side-effects and after his 21days in hospital which he said were “doable” he was drug free (apart from monthly injections of Zometa to protect against bone damage) and his key markers, light chains, kappa and lambda remained normal for 4 years until about Feb 2014. He had 4 years of “normal life” whereby he was still active at d-I-y, house renovations, etc and holidays. Unfortunately, the markers began to rise around February 2014 so he had another 20 rounds of radiotherapy for another plasmcytoma, Velcade given subcutaneously once a week for about 6 months, during which time we still went away on holiday and and he remained active and underwent 2nd SCT in Dec 2014. Less “pleasant” experience than previously but did soon recover but ensured he stayed away from sources of infection for quite a few weeks. Has now just completed another extensive house renovation at grand old age of 69yrs. Only downside is that his energy levels are not as long lasting as they used to be and he gets tired, fatigued more quickly. mind you , he is also 5 years older!!!

[rebeccaRParticipant]

Hi Brian, I am nearly 3 years post SCT without maintenance and it reduced my lambda to single figures and I remain in normal range still – altho numbers have crept up but still within range. I was, however, 0.3% MRD pre and post SCT so no change there. My consultant says the length of my remission is due to the deepening of the response from the SCT. MM is so very individual you will find stories where SCT did not impact at all and those who have good remissions and put this down to the SCT but who knows for sure. There are no guarantees with SCT but I do think it works for more people than it lets down. SCT is a personal decision and a huge leap of faith – I very much err on “hope” so I was always going to go down that route as I could not bear the thought of being plagued with “what ifs”. I think SCT is always a gamble but with the a high probability of lady luck being on your side when you roll the dice. I have no known ill effects at all from SCT and am probably the fittest I’ve been in my life.

Best wishes

Rebecca

[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!

[briananParticipant]

Hi

Many thanks to those who replied – they have certainly increased my understanding.

All the best

Brian

 

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