Hi,im just finishing my 6th cycle of chemo and had a Stem cell transplant in August. I see my consultant on Thursday to discuss maintenance therapy.
Is there anyone undergoing this and what drugs are involved. So far he’s mentioned lenelomide.
Thanks John
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Hi @JE1963 gosh you have had a lot going on over the last months.
I hope others might be able to share their experiences but also what options you have going forward is a good question for your consultant and perhaps the pros and cons of the options.
I have learnt not to feel pressurised to make a decision until I feel happy to do so and to say I will get back to you.
Please let us know how you get on next Thursday and what the way forward is for you.
Take care of yourself
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Hi John
I had my second transplant in April and started Daratumumab maintenance in June every four weeks until my next relapse and Zometa every 3 months
I was having dara pre transplant and decided with my consultant that I would continue with it after the transplant as I have tolerated dara well
I have more problems with steroids
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Thanks for that,i have heard dex is sometimes used which im beginning to struggle with so hope its not involved.
Ill know more on Thursday but my brains working overtime at the mo.
Ill get back to you when i lnow for sure.
Again thanks for your response and best wishes…
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Many thanks for this info Erica,ill get back to you when i know more.
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Hi John,
I’m sorry to hear you’ve had such a tough time. I really hope that the treatment you have received so far has been effective.
It’s absolutely natural to feel uneasy and anxious about the next phase of your treatment so please try to be kind to yourself and take time for yourself and things you enjoy doing.
I’d suggest making a note of any concerns you have about your current treatment and that in the future so you can discuss with your Consultant.
Please let us know how you get on on Thursday.
Take care.
Nick
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Hi @JE1963
Well done for getting through your transplant. That’s a big treatment achieved! I’ve never been offered maintenance therapy and I’m curious as I’ve read of other people who have had nice long remissions with the help of it. I hope you can get all the information you need to make the best decision for you.
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Hi John,
I have been on Lenidamide maintenance treatment since January. I take a 10m capsol every day for three weeks and then have a week’s rest. I opted not to have the stem cell transplant for a number of reasons and so far so good. Good luck
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Thanks Peter,i start lenelomide maintenance tomorrow too.
3 weeks on 1 off.Finally at the end of the tunnel. 
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I find it always helps once a decision has been made and you get started on a plan of action.I hope the Lenalidomide maintenance will work really well for you @JE1963
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@JE1963
I have Lenolidomite maintenance, have been on it since stem cell transplant happened in Jan 2021. 10mg tablets 1 a day for 3wks then a week off like a few have said. So far all has gone well, no issues and everything is staying undetectable. Hope all goes well for you.
Adam
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I’m really intrigued to read of Lenolidomide or Dara maintenance being offered, seemingly as almost ‘standard’ and pleased it seems to be working well @JE1963 @petergreenfield @2DB. I’ve never been offered it. I will have a discussion with my consultant once his clinic frees up an appointment for me (I’m overdue) although I guess if you don’t start it immediately the horse has bolted, so to speak.
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Information in this link may help with your discussion
I’m second transplant in
I didn’t have maintenance treatment with my first transplant
I have been told that once you use a maintenance treatment I can’t have it as another treatment I think that swayed me along with tolerating dara to continue with it rather than lenlidamide
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Thankyou for this link,i found it very insightful.
John
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Yes I found it really helpful too. Thank you @2DB
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