Lenalidomide precautions

[Nancy Byham]

I know the protocol handling this drug but husband worried about contact with
Grandkids . Other than out of reach of anyone- and rough housing ( bleeding) are there any other precautions necessary?
Should he use gloves taking pills?
This is all very new.. thanks for your help

[Lee Warner]

Nancy, are you asking about Revlimid? Or is the product actually labeled lenalidomide with no other name?
It might be best to directly contact the maker of the drug. Bristol Myers Squibb bought Celgene the maker of Revlimid.

On a post here, perhaps to you, I identified the maker of Revlimid as “Merck”…. it’s not Merck, it’s Bristol Myers.

[Nancy Byham]

As far as I know it’s lenalidomide. I guess I’ll wait till it’s delivered and see for sure what it is.
Thanks

[stacey]

Hi Nancy,

When I started taking Revlimid as a clinical trial drug for compassionate use back in 2004, I noticed my doctor would count the pills I had remaining in my bottle when I brought it in to her by tilting the bottle and counting by sight. She actually never touched the capsules with even gloved hands. So since then, I don’t touch the medicine when I take it, I just tilt the bottle, put a single capsule in the pill cap, tilt my head back and drop the capsule in my mouth so it doesn’t actually touch my hands. I still wash my hands in my upstairs bathroom after just as an extra precaution. The medication guide and pharmacist counseling will mention not to crush or chew the capsules, but it sounds like you are aware of that already. I take the medicine with water from a separate glass than the glasses my children ever use, and it is washed after that single use.

In addition, I wash my clothes separate from my children’s. This is probably totally unnecessary, but I never knew if Revlimid would come out in my t-shirts if I sweat, so I started this all those years ago and just stayed with it.

I also keep my Revlimid at the very top, high shelf of a closet inside in its chemotherapy warning Ziploc bag that was shipped with the medicine. It is at a constant temperature, kept away from light and heat, and I put a childproof lock on the door handle when my kids were babies. My kids are teenagers now, but it has all stayed that way ever since.

Hope this helps. Best of luck to your husband.
-Stacey (age 51, 5q- MDS, diagnosed in 2004, currently taking 5mg Revlimid capsules every day daily, no other medications except Synthroid)

[Nancy Byham]

Ok I’m absolutely blown away- we are on fixed income. We have supplemental to Medicare with minimal copays.
But $2000 copay ? Who can afford that?
Why even suggest this treatment? There are no programs or coupons available either. And the cost with no insurance?
$35000/month😳 good ol USA .

[lisab]

Hi Nancy
Been on lenalidimid for almost 3 years. The pharmacist is constantly warning me that no one of child baring age should have contact with it. My rule is no one touches it but me. I wash my hands after as well. It was explained to me that this drug is related to thalidomide which caused so many birth defects over 50 years ago.
I’ve done well on this drug. Been transfusion free since I started. Have some side effects but the benefits out weigh those.

[Lisa Dana]

I believe the lenalidomide is the generic for Revlimid, that was approved in March 2022. You can get grants from the company or several other pharmacies. I’ve been approved for many grants regarding Revlimid. Most last about a year and I have no copays at all. I’m also on Medicare. I think if you reach out to Celgene they may be able to help with the copays. One place to check out is Patient Advocate Foundation they can put you in touch with copay information. I’ve been on Revlimid for about 5 years, seems to be ok although I still have blood transfusions every 3 weeks with my hemoglobin staying below 7.

Every month my medicine is delivered by Fedex overnight. It comes heavily packaged with and ice pack, several wraps of caution tapes and bags. Then I get 3 phone calls from the company, the pharmacy and someone else to answer questions about how to handle the medication. You don’t need to wear gloves but no one else should be handling it.

Just as a side note. One of the lenalidomide capsules got stuck in my throat last month. The pill broke in half, one half stuck in my throat and the other have was ‘coughed’ out on the floor. My husband called the emts and poison control. I was taken to the hospital and had a throat wash. Hazmat was called to remove the half capsule from my carpet. They wore zoot suits and gloves and thoroughly cleaned my carpet.

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