[jazmaxParticipant]

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.  Doing the three week cycles also makes you feel like you are going back on chemo!   I believe you have to take steroids again too?

I would really appreciate some more feedback from anyone, it is helping.

Thank you.

[jazmaxParticipant]

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 weeks, so will take the list of questions with me. But would still welcome input from people who had the same dilemma as me.

It’s good that you are doing well without maintenance and your pp dropped a few months later, that seems to happen a fair bit from what I have read, which is encouraging.

Thanks for your help and good luck.

Pam

[jazmaxParticipant]

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 really. I don’t feel to bad in myself apart from this. I cannot improve my fitness because of this, as I need to rest/put my feet up if I have been on them for say more than an hour. So going out for walks etc is not on at the moment.

im back at the hospital Friday where they will tell me if the SCT was a success or not!! It’s been 5 weeks now that I have been out of hospital and I feel a lot better now than I did then. Appetite still not 100 percent but getting there.

Not looking forward to Friday, but hey has to be done.

I have booked in for a foot and leg massage Wednesday so will see if this does make any difference.

thank you

pam

 

 

[jazmaxParticipant]

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

[jazmaxParticipant]

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.

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