[david1968Participant]

Hi all ,I was diagnosed early this year with stage1 myeloma and all was going fine until ten days before sct when my paraprotines  rose from 2.8 to12.3  ,I have got to start four cycles of vd to get levels down again but doctors are trying to push me down clinical route is this to save nhs money or best for me.

Regards David

[jcr2468Participant]

Hi David

I don’t think it is to save the NHS money – I was on the Myeloma XI trial back in 2011 when I was diagnosed. I stayed on in for about 18months and they monitored me every 4 weeks. They took me off it when I relapsed and then they gave me Velcade which worked really well. I’m now drug free for the first time in 3 years.

Don’t think that if the clinical route doesn’t work then they wont give you anything else they will always look after you.

It’s your choice and your choice alone don’t let anyone make the decision for you

Good Luck

Julie

[david1968Participant]

Hi,what is a tandem sct and does that mean I have used all my stem cells up! Then were do I go if it does not last long.           Regards david

[rebeccaRParticipant]

Hi David, My understanding is that by going onto a trial you have access to newer and potentially more effective drugs (not readily available on the NHS until results are proven by trials – even tho they will have been trialled in other countries/used by them) and by going on a trial you are randomised for maintenance therapy following SCT – something that you cannot get in the UK unless you are on a trial (for now anyway). When you are on a trial you are closely monitored – which is a good thing also. I was ineligible for trials due to extent of kidney damage at diagnosis and felt robbed of opportunity/maintenance option. Back to back SCT could mean 2 sct’s within 6 months using your own stem cells or could mean 1 SCT using your own cells followed by a mini allo (i.e. using a donors) which I guess has more risk but more chance of it being curative. I mention the latter because the under 50s seem to be given this option. Stem cells can still be collected from you after an SCT – many have gone on to a 2nd SCT via a new collection. Sometimes, it is harder to collect after many more treatments but they have drugs to help/boost the process in these scenarios. Are they trying to get you to do a trial involving a double transplant because your levels have risen so quickly and they want to treat it more aggressively? if this is the reasoning I’d think carefully about not going down the trial route and accessing newer treatment options. You need to be well informed before making such a decision and I suggest you phone the helpline and talk to Ellen – you can ask her anything and she will explain everything you want to know with no time limits imposed – and no question is too trivial to ask. Consults are often difficult as you have limited time and tend to come out thinking why didn’t I ask that. Best wishes

Rebecca

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