Lenolidamide and Ixazomib

Posted by Ginger, Volunteer Mentor @gingerw, Sep 22, 2024

Lenolidamide [known also as Revlimid] and Ixazomib [known also as Ninlaro.

I have been on lenolidamide plus dexamethasone for over 3 years. We are now going to add ixazomib to the protocol. This is to treat my multiple myeloma, IgM Kappa type.

Does anyone else have this protocol? Any tips to share? Curious when you take the once-a-week ixazomib, and is it at the same time of day as the lenolidamide? I take the lenolidamide at night to minimize nausea effects. What side effects have you experienced? Any thoughts are much appreciated!

While there is patient education scheduled this week at my cancer center, it's always nice to hear from fellow soldiers in the foxholes!
Ginger

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Hi. I saw this thread when searching for something else.

I’ve been on that protocol for some time now. I was randomized to this with a consolidation treatment after a stem cell transplant a couple of years back. This is a medical trial and this was the most “advanced” protocol.

The meds are fortnightly Ixazomib with 21 days per month cycle of Lenolidamide. With supporting meds.

Lenolidamide and Ixazomib My experience has been very positive. Minimal side effects, some fatigue after my fortnightly infusion but overall I’m living normally. I’ve noticed some taste and smell issue post transplant however could have been damage from massive dose of chemo involved.

Context is I was diagnosed very early, just beyond “smouldering”, my Kappa Light Chain elevation was picked up after a routine blood test picked up a mild kidney impairment. I was very very lucky as no other damage had occurred. Doubly luck that I live in England and haven’t been asked about a bill or insurance once. The treatment has been incredible. It’s actually pretty shocking seeing how effective a public health system can be. I can’t imagine having to think about insurance and bills. Cancer is also a protected characteristic here, meaning all treatment time off must be granted as paid leave and you cannot be fired because of your medical condition. All my prescriptions are also free, not just for my maintenance meds but for everything. It’s wild.

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As you know my husband has been on this a few times, and the side effects were very minimal. The fourth and last time he was on revlomid (lenolidamide), he started to have some real digestive distress. His protocol has been changed this time due to other changes in his myeloma.
@grammers he also had smell and taste changes after transplant. He said he will never eat creamed corn again either.
I am so glad that you shared this positive story of public health. How amazing would it be if everyone could have that kind of cancer care.
How long have you been diagnosed?

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