[Nanna59Participant]

Hello all

Not been on here for a while am struggling to find my way round.
I had my sct in Sept and was told on 23rd December that I was in full remission (Thankyou God)
I have been asked to consider going on the maintenance trial but reading all the side effects of Revlimid and Vorinostat scares me rather. I could do with some advice from anyone who is on this combination please. Of course its a randomised trial and I dont know for sure thats what I would get

Many thanks in advance
Chris

[tonyfParticipant]

Hi Chris, firstly happy new year. I had my SCT beginning February 2013, took a while to get back to ‘normal’ but almost a year down the line and I feel great, I have had one stay in hospital for three days back in August with an unknown infection and currently have a nasty cold, but that’s it. I opted for no maintainance although I am still monitored for the myeloma X1 trials. I decided against maintainance drugs because of what I had read re the side effects, I was tired of feeling rough and thought I would go with no drugs. Proved to be the right move.
By the way I’ve been abroad as well as holidays in UK, feel good.
Best of luck with your choice.
Regards
Tony F

[MicheleParticipant]

Hi Chris

I had my SCT in February 2012 and opted to go drug-free afterwards. I personally couldn’t see the point of going through 6 cycles of CTD and having a SCT, only to immediately go on more drugs afterwards that would not let me be side-effect free for my unknown length of remission.
I’ve almost reached my 2 year point now and have never regretted my decision. I’ve had a brilliant drug-free remission and have felt very well indeed.
I also feel that my body has had a chance to recover and will respond well to my next treatment when I relapse.

However, that’s just my point of view and obviously there are folk on here who have been on maintenance drugs and will be able to tell you how they’ve coped.

All the very best whatever you decide.
Michele

[Nanna59Participant]

Thankyou Tony and Michelle for your replies
It’s a difficult decision to make and I appreciate your opinion.
It’s good to get the view of someone who has gone through it already
I did wonder whether I wanted to take even more drugs after the year I’ve had to be honest but then I think will I regret it if I don’t?
Eee decisions decisions
🙂

[tomParticipant]

Hi Chris

Well done on the remission am pleased for you.
As for the Maintanance regime I was never asked if I wanted to go on it so am not sure what I would have done to be fair.

But I gad my SCT in December 2009 and I gave had four years remission drug free which was great for us all sorry to say the myeloma has become active again, but four years drug free was good, if and when I get offered a SCT again then onto maint regime I think I would turn it down but that’s just me, am sorry to say you will need to come to that decision on your own. That said I am a big believer that it’s no point looking back and saying what if??? The decision made at the time is the correct one at that time.

Good luck
Love Tom onwards and upwards xx

[Nanna59Participant]

Thanks for your very sound advice Tom
You are so right and there are a lot of things to consider
So sorry to hear that your Myeloma has returned but love your positive attitute
It’s very encouraging!
Love
Chris x

[tomParticipant]

It’s not a problem Chris and am sure it will work out well and I wish you luck I. Your decision whatever it is.

As for the myeloma we knew it would come back it’s just a when and how, am blessed with having no bone damage (that we know of) so that’s a blessing and as always it’s onwards and upwards.

Love Tom xx

[Nanna59Participant]

Yes that’s true Tom
I’m so glad you have had no damage
Even though Im only just in remission I am worried about the return of the wretched thing!
I need to switch off from it and enjoy it
How long did it take you to start to enjoy it?
C x

[jmsmythParticipant]

Hi Christine

Glad that you are in full remission. Frank had SCT in March and is also (thank God) in full remission. Had a PET scan as well and no signs of cancer. Mind you ha has had a cold now XOR about 4 weeks but no temp. I asked his consultant why he was not offered maintenance and she said that it is only offered to,people on trials. We are in Belfast so not sure if that only applies here

Best wishes
Jean

[Nanna59Participant]

Hello Jean
Thanks for your reply.
I have been having trouble logging in
I thought everyone was given the choice of maintenance treatment
It’s surprising how treatment differs in different areas
Cx

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