[susieParticipant]

Hi All
I put a new post on the wrong section yesterday. Under “side effects”. Obviously had a senior moment. Well I am getting older, LoL
Be grateful for any answers as I’m trying to make my mind up whether to agree to go on maintenance.
Best wishes
susie

[jonoParticipant]

Hi susie

I have just started maintenance therapy the thing that swayed me is that on the trial you are more closely monitored whether I was selected to have lenolidamide or no drugs. Also you can opt out anytime you want.

I was selected to be on the treatment it is a lower dose than I was on before with no problems so far also I hope my involvement will help people in future.

Jono

[susieParticipant]

Thanks Jono. I have thought about the better monitoring when you’re on maintenance. It may be worth going on it, then if it affects me too much I can come off it.

How long was it after your treatment finished did you start the maintenance ?

Best wishes

susie

[jonoParticipant]

Hi it is after day 100 that I started maintenance I am only on cycle one. I have picked up an infection of some sort. I ended up in hospital for four days. At first I put it down to the drug but now I am not so sure.

[Ang287Participant]

Hi
My husband is on the Myeloma XI maintenance treatment. After 100 days post transplant he was transferred back to our local hospital and then it was a few months before he was randomised and it was decided he would take maintenance. He realizes he can say no but wanted to go with what was decided for him by the trial and he said he can always come off it if he doesn’t like it but wants to carry on with the trial as this may help with treatment decisions in the future. I think he is now on his 6th or 7th month of maintenance and for the first 4 months he had one infection after another but has now been ok for a couple of months. Weeks 1 and 3 each month of the trial are his worst weeks and he has to remember to take his tablets and in the evening usually has a rest for about half an hour after the tablets. He took voluntary redundancy after his stem cell transplant so has no work worries and now spending more time on his hobbies which is good. I hope the maintenance treatment does mean that he has a much longer remission than if he had not had it but who knows – hopefully somebody will benefit from this in the future if not now.
Best wishes, Angela

[Author]

Posts