Revlimid: Understanding Adverse Effects “is Crucial”

Since her multiple myeloma diagnosis in December, Laurie Miranda has been getting a crash course in life with cancer. She’s learned the importance of advocating for herself in healthcare settings, taking detailed notes during conversations with her care team, and asking about insurance coverage and cancer treatment costs to avoid financial toxicity.

When she started taking lenalidomide (Revlimid) in January, Miranda learned that she should have asked more questions first. The adverse effects caught her off guard.

“Every horrible thing that could have gone wrong happened,” Miranda said. “In the first three days of taking Revlimid, I don’t know how many messages I sent my care team through my portal.”

After a few weeks, Miranda’s hematologist took her off Revlimid with a plan to revisit it again later.

What Is Revlimid?

Revlimid was the first oral medication developed to treat multiple myeloma. It’s an immunomodulatory drug, which means it fights cancer by helping the immune system work more effectively. It can also target and destroy cancer cells and prevent new cell growth.

Revlimid is a capsule, taken once daily with water, which makes it easy to administer. It is also effective. According to the Multiple Myeloma Research Foundation, Revlimid significantly decreases the risk of disease progression and can be used to treat all stages of this rare blood cancer. It is often prescribed in combination with a corticosteroid called dexamethasone.

The Adverse Effects of Revlimid

Like many other cancer drugs, Revlimid has adverse effects, and Miranda experienced many of them.

“The Revlimid was very, very strong for me,” the 68-year-old retired detective from Arizona recalled. “I had every [adverse effect] you could imagine. If the warning label listed it, I had it.” She said the only adverse effect she didn’t experience was diarrhea.

“I had headaches and an itch that made me want to gouge out my skin,” Miranda continued. “And the neuropathy was horrible.”

While not everyone experiences adverse effects with Revlimid, the International Myeloma Foundation lists these as some of the more common ones:

• Itchy skin

• Rash

• Nausea

• Diarrhea

• Constipation

• Tiredness

• Fever

• Insomnia

• Headaches

• Swelling of the arms, hands, legs, feet, and skin

Less common but more severe adverse effects include:

• A risk of new cancers

• Liver problems

• Birth defects

• Blood clots

• Severe allergic reactions, including skin peeling and blisters

Miranda’s hematologist started her on 25 milligrams of Revlimid daily, which is a standard dose. He also prescribed dexamethasone and generic bortezomib (Velcade). As Miranda experienced the physical adverse effects, her doctor noticed an issue in her lab work.

“The Revlimid made my kidney numbers go up,” Miranda said. Her doctor and nurse practitioner weren’t sure if the multiple myeloma or the Revlimid was to blame. Still, since Revlimid is excreted by the kidneys, they decided to stop it temporarily to give her renal system a break. She continued taking the other two medications with a plan to restart Revlimid as soon as her kidney numbers improved. It’s not something she looked forward to.

“I was on the Revlimid for two weeks and then off for one week, and I couldn’t stand it,” Miranda said. “I wouldn’t let anybody come to my house, and I didn’t go anywhere. It was just that miserable. Needless to say, this experience has frightened me for treatment.”

Questions to Ask Your Care Team

Understanding the potential short-term and long-term adverse effects of Revlimid and other cancer drugs is essential so you can prepare mentally, emotionally, and physically. In a Patient Power program called Managing the Side Effects of Myeloma Treatment, Rafael Fonseca, MD, FACP, from the Mayo Clinic in Arizona, shared another reason why understanding potential adverse effects is crucial for people with multiple myeloma and their care teams.

“It is critically important that people pay attention to toxicities because myeloma patients now can live for many years after a diagnosis,” Dr. Fonseca said. “So, carrying the burden of a toxicity, particularly one that you’re going to carry for longer, is really not something we want to see. We have to be extra careful and attentive to prevent some of those toxicities that might be there for the long term for patients.”

Here are some questions to ask your cancer care team before starting treatment. You can ask these about Revlimid or any cancer drug:

• How often will I take this drug?

• Should I take it with water? Food?

• Do I need to eat a special diet?

• How long will I be on the drug?

• How will we know it’s working?

• What are the most common adverse effects?

• What are the most severe adverse effects?

• What can I do to ease the adverse effects at home?

• When should I tell you about the adverse effects?

• What’s the best way to get in touch with you?

• When should I go to the emergency room or call 911?

• What are my options if this treatment doesn’t work?

• Is there anything else I should know?

Keep Moving Forward, One Day at a Time

As someone who spent her career in law enforcement and was always physically fit, receiving a cancer diagnosis was startling for Miranda. Still, she’s learning as she goes and offered to share her Revlimid experience to help others because she understands the importance of community. With the support of her husband and friends and her own inner strength, she keeps moving forward, taking it one day at a time.

“My kidneys are getting better, so I started back on Revlimid at a lower dose,” Miranda said. “Since I reacted so strongly to 25 milligrams, my doctor and nurse practitioner decided to start with 5 milligrams this time, but that wasn’t enough. Last week, they upped it to 15milligrams. Hopefully, the 15 won’t hurt my kidneys. I’ll get my lab results next Monday.”

To learn more about Revlimid and to see a complete list of potential adverse effects, visit the U.S. Food and Drug Administration (FDA) prescribing information for details.