[myeloma2016Participant]

Hello everyone
hope all are fine.

I had my first Autologous stem cell transplant on 27 August 2020 , and ill be on Lenalidomide 10 mg maintenance from next month. I have spoken to two oncologists and they have different opinion on how to take the Lenalidomide 10 mg which makes me quite worried as if one might be wrong.

One of them recommended taking the pill once daily continuously without any rest for two years, the other one recommended taking the pill for 21 days with one week rest and continue the cycle on day 28.
Anyone currently is on Lenalidomide maintenance10 mg? May I know how you are taking the pill after SCT? And is there any standard way of taking the pill after SCT for maintenance therapy?

Thanks

[mulberryParticipant]

The protocol used in the myeloma XI trial, which was the study that highlighted the benefit of lenalidomide maintenance to Myeloma patients after SCT, was/is 21 days then a 7 day break. Ask the Dr who advised taking it without a break why, there may be a reason in your case.
There are not yet many patients in this treatment as the NHS in England, Wales and NI haven’t approved it (due to cost) & Scotland only approved it a few days ago. Patients with private health insurance, deep pockets, or prepared to source it from overseas are the only ones currently on this treatment.
I hope you get on with it well, in certainly relieved to be on it. (21/28 cycle)

[myeloma2016Participant]

Thank you very much for the information.
I was also advised to take 1/4 warfarin with this dose of maintenance treatment. Again,one Dr recommended to take 1/4 warfarin and the other one said its only need to be taken with lenalidomide 25mg, and i do not need to take warfarin wiz lenalidomide 10mg.
Are u taking warfarin wiz lenalidomide?

[myeloma2016Participant]

Hi everyone
Any one is on lenalidomide 10 mg for maintenance therapy? what’s the best time of day to take the medication? please share your experiences.
Any one taking 1/4 warfarin (anticoagulant) with lenalidomide 10 mg after SCT? can be taken together at the same time or need to be taken at different times?

Thanks

• This reply was modified 4 years, 1 month ago by  myeloma2016.

[mulberryParticipant]

I’m taking low dose aspirin with maintenance lenalidomide. I take the asprin in the late morning and lenalidomide at night. I do this because I have thyroid medication that has to be taken early morning without any other medication for an hour +. I think the important thing is to remember to take them at consistent times, so whatever works for you.
It is normal to take something to thin blood as there is a risk if DVT with lenalidomide.

[marty2019Participant]

Hi myeloma2016. I had an SCT in February this year. I take two Apixaban 5mg (anticoagulant) tablets each day twelve hours apart: 10AM and 10PM. This seems to work well. I set the alarm on my phone to remind me. I also take one Lenalidomide 10mg daily but at a different time. I have found it difficult to find the best time to take Lenalidomide as the instructions on the box are very specific. I suggest you contact your specialist or pharmacist for the best advice.

[myeloma2016Participant]

Hi mulberry
Thanks for your reply. I’m also taking Thyroid medication every day.

Take care

• This reply was modified 4 years ago by  myeloma2016.

[myeloma2016Participant]

Hi Marty
hope you are doing fine.
Besides Lenalidomide and anticoagulant, are you taking any other medication for maintenance therapy after SCT?

Stay safe

[redlinehighParticipant]

Hi All,
I had my first s.c.t. 9th September and I am being put on the lenalidomide maintenance drug and just wanted to ask what people had found to be the side effects long term?
Also i was asked to take the steroid dexamone with it but i found when i took this last time it made me an angry person and i hated it as felt i wasnt in control of my actions, which is not good!!
so was gonna just take 15mg every day with the aciclavor blood thining tablet as normal, any had any experience just taking the lenlidomide?
many thanks for any replies!!

[redlinehighParticipant]

Opps, sorry ment Rivaroxaban as the blood thinning drug, sorry got confused!!

[mulberryParticipant]

I started on 10mg lenalidomide maintenance daily, with low dose asprin about 18 months ago but had to reduce the dose to 5mg daily about 9 months ago as my neutrophils and WBC were consistently too low. Apart from constipation (managed), leg cramps at the end of cycles & possibly some level of brain fog, I’ve not had side effects from either dosage, and these side effects feel ‘worth it’ for the knowledge that statistically it’ll keep my myeloma at bay for twice as long as not having maintenance.
After SCT it seems most people don’t take dexamethasone as maintenance, although those of us who don’t have SCT have a continuous treatment of higher dose lenalidomide plus dexamethasone.

[redlinehighParticipant]

Hi Mulberry,
Thanks for your email and such detailed information, as its really helpful, as the consultant wanted to start me on 25mg which seems so high and the same dose as I was on chemo !
I have been asked to go on the dexamethasone as well which i don’t want to do at all as the steriods made me a horrible person!
There seems such varied way the doses are prescribed which doesn’t help 🤔

On your email you said wbc?
Can u explain what this please?
Many thanks

[mulberryParticipant]

WBC= white blood count

[redlinehighParticipant]

Do you find the treatment disrupts your sleep at all, cause you e.mailed very early in the morning?

[myeloma2016Participant]

hi redlinehigh

the treatment (Lenalidomide 10mg) didnt distrupt my sleep at all. i take it at 9 pm

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