jdisoddyahoo-com posted an update 1 year, 8 months ago
@kh0305
hi i saw your answer about your dad and im trying to work out whether to start lenalidomide or not as a first line maintenance therapy. i hope hes found an effective treatment. i thought the nhs only gave out lenalidomide as first time maintenance recently. was that his first remission, and did he have side effects and infections?
Hi
Dads maintenance treatment was a trial at the time. He had very few issues and lived a very normal life with it for 7 years until his relapse with very few side effects.
I hope that if you go down this route you also have a similar experience xx
And yes- sorry forgot to say- it was his first maintenance treatment xx
thanks, thats quite reassuring. im trying to match up the many positive posts from people post SCT before maintenance, the doomsday statistics that give you 20 months before relapse on the median , the 40 months with lenalidomide which doesnt reflect dvtd new treatment and compromises the best part of your relapse period.
I’ve been able to stick my head and in the sand so far, take the treatment and keep working etc, but now ive got to make some decisions
So many gloomy statistics š I know everyoneās experiences are different and who knows how long heād have had in relapse without the revlimid but it was definitely a good length and quality he had so we are grateful for that! I donāt think thereās a wrong decision- you just have to do what feels right for you xx