Thank you Dawn, this was helpful.  I believe what I will be offered is the same – Revlimid. Pleased that it is working for you now they dropped the dose.  Neuropathy is my existing problem after the chemo, which is the main reason for not wanting the maintenace – but we have to try to do the right thing to treat this and keep the pp down.  …[Read more]

Hi David

Thanks for your feedback. I thought everyone got offered the maintenance post SCT?  Where you on the Myeloma XI trial?

I did read a paper on this site regarding maintenance, although it did have a lot of information, it didn’t do a lot to help me decide. It still left me with the same questions.

Im back at the hospital in a couple of…[Read more]

Jan

Thank you for your advise.  The only thing offered to me were some tablets called pregablin, which is prescribed for peripheral neuropathy. It’s also prescribed for epilepsy and seizures – which put me off straight away.  So far I have been doing without anything, but I don’t think I can continue like time, as it’s ruining my recovery r…[Read more]

Thank you Carol, I shall certainly give this a go.

Usually within 10 per cent of yr current para protein, so if for example its 50, the they will do it when it comes down to below 5.  Hope that helps.