[psg32Participant]

Hello,
I’m 5 weeks into 16 of my chemotherapy and feel that I’m being cajoled into doing stem cell replacement, no other treatment has been offered or discussed? Yes it’s the ‘gold standard’ as I keep being told but…
Having read and listened to a large number of success, failure and every thing in between journeys I’m really not sure I want to go the SCR route. There doesn’t seem to be enough information about none SCR treatment for people who don’t want the procedure, unless that’s down to me and how I’ve been investing.
Obviously there are no guarantees and excluding the extremes, many people seem to take a large amount of time e.g. 10-12 months, with many ups and downs to reach a level where they feel they can live relatively comfortably mentally and physically, of course many don’t reach a comfortable level at all after the SCR.
I’m wondering if I don’t do SCR could I potentially continue living approximately as I am?
I’m 66, relatively fit (which is why I’m being offered SCR evidently) I have a phobia of needles (a historical issue)that causes anxiety, which isn’t good at the moment and the SCR procedure fills me with dread to be perfectly honest. As well as the recovery that sounds like it could be very difficult with many obstacles to overcome hopefully.
I’m looking for quality of life not longevity and would be interested in people’s thoughts and experiences of not proceeding with the SCR?
I appreciate all of this needs to be discussed with my consultant, although the two I’ve seen so far have only mentioned/offered SCR?

Many thanks in advance and good luck to you all.
Peter.

[rabbitParticipant]

Hi psg32 and welcome to the forum.

I went through treatment in the first half of 2023. However, I didn’t have a stem cell transplant.

The short reason why was that, although young enough and superficially fit enough to have one, I have a dodgy heart and a transplant would have put an extra strain on my heart.

However, I did my reading up and discussed it with the consultant. I could have pushed for a transplant but didn’t. Stem cell transplants were originally done when other treatments were relatively ineffective: we are now in an era where patients and doctors are almost spoilt for choice: bispecific antibodies (such as elranatamab, teclistamab and talquetamab), belantamab, celmods, CAR-T (though the last two are not approved yet in the UK)…

The DETERMINATION clinical trial showed that the advantage of a transplant is not so much.

[Now quoting Chat-GPT]
‘There is evidence that some U.S. myeloma patients are delaying or avoiding upfront autologous stem cell transplant (ASCT) more often than in the past, though transplant is still considered a standard option for eligible patients.
Several trends are driving this:
– Highly effective induction regimens (especially daratumumab- and RVd-based combinations)
– Greater use of MRD-guided strategies
The [DETERMINATION] results showing no overall-survival advantage for early transplant versus delayed transplant
– Expanding use of CAR-T and bispecific antibodies in relapsed disease
– Older average age at diagnosis.’

However, in both the US and the UK, transplants are still part of the official first line standard treatment.

Personally, my priority too was quality of life. My response to treatment was ‘very excellent’, and within weeks of going into remission I was off on holiday (though with fatigue and a weakish immune system). I am still in remission.

I am not trying to sell anything to you: simply giving my experience, together with information.

By the way, my stem cells were harvested: I could always have a transplant in some time to come.

Regards
Rabbit

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