[dennisParticipant]

Hi, I was on Lenalidomide 5mg for 4years and December 2024 was taken off it as it was destroying my white blood cells 0,04 instead of 2500 -7500 micros. Has anyone else had this done. I have not been on any other treatment. See my specialist in a couple of weeks.

[dazzParticipant]

Hi there,
Yes I was taken off as it wasn’t working for me and side affects were just to bad so they took me off and gave me a 3wk break to get it outta my system and stuck me on a trial drug…isatuximab.
I am updating everyone on how that is going on a different thread.
Hope they restart you on something soon
Daz

[myeloma2016Participant]

Hi dennis
I have been on lenalidomide 10ml for 4 years and half after ASCT as mentanance. I’m still taking the medication. After ASCT I have it evey day for two years. After two years My specialist advised me to take it for 3 days and one day off medication to help my WBC. Sometimes im off the pill for a week. I try to be on the maintanance pill till relaps. It seems it works for me. Please Le me know what medicines your specialists prescribed for you.

All the best

[tony642Moderator]

Hi there,

I am on Lenalidomide as well, a maintenance dose of 10mg per day, although I was on 40mg a day at one time. I have 3 weeks on and 1 week off, and it is holding paraproteins and light chains down, so fortunately working for me.

Regards, Tony

[jb2514Participant]

Hi
I’ve been on Lenalidomide 10mg, 3 weeks on, 1 week off, since my SCT nearly18 months ago. This is described as a maintenance dose
Working for me

Regards, John

[cjleedsParticipant]

I have been on lenalidamide 25 mg three weeks on and one off as part of Drd treatment for lambda light chain myeloma for 13 4 weekly cycles. This was working very well and reduced my free light chains from 2000 to 21. However regular blood tests showed my electrolytes were low and I had to go into hospital for 5 days for potassium,calcium and magnesium infusions. These corrected my levels but the consultant took me off lenalidamide and continued with daratumumab and dexamethasone for two months. During this time my electrolytes have stayed within normal limits. I am due to restart lenalidamide on 5mg next tuesday with my daratumumab and dexamethasone with a view to increasing the dose gradually with weekly blood tests to see how my electrolytes are affected.
I will sent updates as the treatment progresses

[cjleedsParticipant]

Hello, I have been on 5mg of lenalidamide for the first cycle now (daily for 21days) and I am about to start my 7 days off treatment with the drug . My electrolytes have stayed ok according to my weekly blood tests which have been monitored by my constant. I meet with my consultant on wednesday and the plan at the moment is to increase the dose of lenalidamide to 10 mg.
I will post an update about how this goes
Colin

[cjleedsParticipant]

Hello,
i’ve moved to 10mg lenalidamide and 10mg dexamethasone. My consultant move me me from 20 mg dexamethasone to 10 mg because i was getting skin tears when even brushing my skin against something rough when normally this would cause only a little irritation. Then consultant thought that the steroid was causing my skin to be hypersensitive. Then consultant increased lenalidamide was planned

[brewy36Participant]

Hi Dennis,
I started on lenalidomide in Sept 2023 but it affected my platelets, they dropped to quite a low level, so I was advised to stop taking it. That was in May last year and I’m still in remission and doing well even though I’m not on any form of maintenance treatment, so don’t worry if your team advises the same.
Brewy.

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