[PerkymiteParticipant]

Hi all, I never realized that "maintenance" meant taking two or more drugs, I assume permanently. When I went on to Revidimid, 6 weeks ago now, I was told that if it worked I could continue to take it as maintenance (I am 70 so no age thing here). I just assumed it was a lower dose of Rev just to keep the MM down. I get no side affects from Revilimid but I am not happy with Dex!!!! I currently take Rev + Dex. Now I can understand the constant "should I take it as maintenance" questions. 😀

If my next meeting on the 29th goes well I will have to ask about it!

Kindest regards – vasbyte

David

[SarahJaneParticipant]

Interesting reading al, your replies, thank you 🙂
The maintenance trials (offered to trials patients who have successfully gained some form of remission) are to see if by taking combinations of different drugs they keep the myeloma at bay for longer, or not as the case may be. I'm now on week 3 and suffered mainly with tummy problems, a pattern is forming and I'm blaming Vorinistat. Will be interesting to see how my 4wk blood test is next week, and see if it has affected the results. I'm still not sure if I can cope with the side effects, and having returned to work last week for the first time since July I'm dreading any toilet episodes LOL.

Still want to go away somewhere warm for new year, will be a very last minute booking as I need to see what my bloods are, will then probably stress about getting dvt for a week LOL.

FYI did get an individual holiday insurance quote from World First (recommended on this site), very thorough myeloma questioning, £76 for Lanzarote and £139 for Egypt, not too bad for peace of mind I thought.

Sarah Jane x

[john62Participant]

Hi sarah
This is my second attempt to send a message,
anyway SCT DECEMBER
maintenance April REV AND VORINISTAT.

Maintenance significantly prolongs remission
Myeloma beacon.
I love my sleep so I keep out of the chair,

Sorry but I go to the pub and have a good laugh
go home and sleep like a log

I would have been disappointed if I had been randomised
with no maintenance.

OK WBC low bone marrow being hammered,

At least I had the choice
VORINISTAT ??

I work seven days some weeks love it,
but some days my mined just can not get my body going
strange this is the battle.

john
PS Went to Germany in June and Portugal last month
just completely forgot about insurance,

[Author]

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