Lenolidamide and Ixazomib

Posted by Ginger, Volunteer Mentor @gingerw, Sep 22 12:58pm

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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Colleen Young, Connect Director | @colleenyoung | Sep 27 3:26pm

I believe that @bbc2024 may have experience with Lenolidamide (Revlimid) and Ixazomib (Ninlaro) and may be able to share their experience.

@gingerw, did you add Ixazomib yet?

Ginger, Volunteer Mentor | @gingerw | Sep 28 10:28am

In reply to @colleenyoung "I believe that @bbc2024 may have experience with Lenolidamide (Revlimid) and Ixazomib (Ninlaro) and may be..." + (show)

@colleenyoung This morning [Saturday] was my first dose. In the patient education I received from my cancer clinic, it is to be taken on the same day I take my dexamethasone. There will be two doses [today and next week] before I see my oncologist on 10/9.

Hoping to hear from @bbc2024!
Ginger

bbc2024 | @bbc2024 | Sep 28 12:19pm

In reply to @gingerw "@colleenyoung This morning [Saturday] was my first dose. In the patient education I received from my..." + (show)

Here I am. Since my second transplant I have been on Darzelex, revlimid and Ninlaro, dexamethazone cocktail. I have been tolarating it well. I have just had my 20 th cycle. My numbers improved and have been steady for the last 6 months. Actually my doctor cut down my steroid to 4 mg once a month. So I am ok so far.

bbc2024 | @bbc2024 | Sep 28 12:21pm

In reply to @bbc2024 "Here I am. Since my second transplant I have been on Darzelex, revlimid and Ninlaro, dexamethazone..." + (show)

Sorry Darzalex, ninlaro, revlimid and dexamethazone coctail.

Ginger, Volunteer Mentor | @gingerw | Sep 28 6:54pm

In reply to @bbc2024 "Here I am. Since my second transplant I have been on Darzelex, revlimid and Ninlaro, dexamethazone..." + (show)

@bbc2024 Thank you so much for responding! Really glad to hear that you are doing well. How long after your second transplant did you need to go back onto a cocktail like this? Did you reach remission at all?

The Darzalex addition will be my next step. I am not a good stem cell transplant candidate due to extenuating circumstances. At patient education they told me to take the Ninlaro on the same day as my dex, which is Saturday. I am on 12mg once a week of the dex, down from 20mg where I started.

Fingers crossed, today was without any incident.
Ginger

bbc2024 | @bbc2024 | Sep 28 7:29pm

No I did not reach remission. My second transplant was in December 2022 and I think I started in early February I think. As I said I have just been through 20 cycles. You hope to achieve steady response regardless of remission. I think, darzalex is a must and Zometa monthly.

bbc2024 | @bbc2024 | Sep 28 7:36pm

In reply to @gingerw "@bbc2024 Thank you so much for responding! Really glad to hear that you are doing well...." + (show)

I should have said that you hope to achieve MGUS like state.

jnet116 | @jnet116 | Sep 28 7:47pm

In reply to @bbc2024 "No I did not reach remission. My second transplant was in December 2022 and I think..." + (show)

What qualifies you for remission!

I have just been diagnosed. My first treatment is this week, October 3. So I’m still learning.

Thank you

bbc2024 | @bbc2024 | Sep 28 7:56pm

No evidence of cancer means remission.

Ginger, Volunteer Mentor | @gingerw | Sep 28 9:49pm

In reply to @jnet116 "What qualifies you for remission! I have just been diagnosed. My first treatment is this week,..." + (show)

@jnet116 welcome to Mayo Clinic Connect. We're you diagnosed with MGUS or multiple myeloma? What treatment are they planning for you? What part of the country are you in, where is your cancer center?
Ginger

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