[jazmaxParticipant]

Im looking for some feedback about the maintenance programme post SCT.  I had my SCT February, para protein has been ‘negligible’ since and I have been told could go into remission in a few months. But we will see.  Consultants are now talking about the Maintenance programme, which I have reading up about. It’s a bit scary. Side effects – Recognised that it can cause secondary cancers is my main worry along with the neuropathy, which I still have in my feet from the chemo. Having to take steroids again on three week cycles, it’s feeling like I will be starting chemo  all over again. I know some people opt not to do the maintenance, but it’s such a worry trying to make the right decision. Can anyone help that has been at this stage, I would appreciate your thoughts.

thank you, Pam

[davidainsdaleParticipant]

Hi jazmax

It must be a difficult time for you. Maintenance treatment post SCT is not something that I have been offered.

It is still early days after your SCT, in fact my pp levels stayed the same after my SCT and then dropped rapidly after a few months.

Myeloma UK did a very good webinar broadcast on maintenance treatment a few months ago. You can find it by using the search engine on this site or looking on Youtube. This may address some of your queries. If not then try the Helpline.

Hope this helps.

David

[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

[davidainsdaleParticipant]

Hi Pam

Thanks for your comments. So far as I am aware, maintenance treatment ( which I think is only available as part of a clinic trial ) is not automatically offered after SCT.

If there is a local support group near you there may be other patients who you could talk to.

From what I have seen and heard, there are pros and cons and in the end it comes down to personal choice. For me, it is nice to be drug free post SCT, apart from the over the counter medicines for the odd cough and cold!

Fatigue and lack of stamina have been the main problems in recovering from SCT.

Hope this helps.

David

[cartdawParticipant]

Hi I commenced maintenance treatment around March time after my SCT.  I am on the myeloma IV trial and was randomised to Revlimid.  I started on 10mg but had mild neuropathy in my feet and fingers going numb so it was dropped down to 5mg and seem ok on this.  I’m giving it a go and my pps are stable at 2 at the moment.  I am back at work now although I get tired easily.  If side effects become a problem I will come off it as quality of life is important but 5mg seems fine.  Hope this helps .  Dawn

[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.

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