A beneficial effect of lenalidomide maintenance therapy on overall survival (of MM) in this setting has been inconsistent between individual studies.
I have been on Revlimid for four years. Nothing has changed since my autologous stem cell transplant following my multiple myeloma diagnosis. The Revlimid is causing side effects that are really affecting my lifestyle. Did you ever stop taking maintenance drugs?
My MM is behaving because it’s not growing. I’m in Very Good Partial Response (VGPR). Concerned that if I stop taking revlimid that will change. I appreciate any input you have. Suzanne
Hi Suzanne-
I am sorry to read of your MM diagnosis though happy to see that you are in VGPR. A four year plus remission is above average.
I understand your concern about discontinuing low-dose maintenance revlimid. Research confirms that maintenance chemo can increase a MM patients progression-free survival (remission).
Unfortunately, maintenance revlimid can also bring side effects. Only the patient can decide if the risk of discontinuing maintenance chemo is worth the risk of stoping chemo.
One possible solution for may be evidence-based but non-toxic therapies shown to kill MM. 
- Anti-angiogenic foods
- Anti-angiogenic supplementation
- Anti-MM therapies such as exercise and whole-body hyperthermia
All have been shown to fight MM. The catch is that none of these therapies has been studies and approved by the FDA. That is why they are called non-conventional.
For the record, everyone relapses eventually. Those studies that say that maintenance therapy extends PFS also say that maintenance therapy does not lengthen OS or overall survival. People do not live longer by taking maintenance therapy.
I will add the MM CC nutrition guide below. Please watch the Ted Talk of Dr. Bill Li. Watch for the slide when Dr. Li talks about anti-angiogenic foods and chemotherapy. Revlimid is right next to curcumin and resveratrol.
Another idea to feel better is to lower your dose of revlimid and add integrative therapy- curcumin in this case. If your current dose of revlimid is 20 mg, consider lowering the dose to 10mg. Half the chemo, half the toxicity.
To learn more about LDRM- click now
Let me know if you have any questions. Hang in there.
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Recommended Reading:
“Patients with multiple myeloma treated with lenalidomide maintenance therapy have improved progression-free survival, primarily following autologous stem-cell transplantation.
A beneficial effect of lenalidomide maintenance therapy on overall survival in this setting has been inconsistent between individual studies.
Minimal data are available on the effect of maintenance lenalidomide in more aggressive disease states, such as patients with cytogenetic high-risk disease or patients ineligible for transplantation. We aimed to assess lenalidomide maintenance versus observation in patients with newly diagnosed multiple myeloma, including cytogenetic risk and transplantation status subgroup analyses…
“Revlimid side effects
Revlimid can cause mild or serious side effects. The following lists contain some of the key side effects that may occur while taking Revlimid. These lists don’t include all possible side effects…
More common side effects
The more common side effects of Revlimid can include:
- cough
- skin rash or itching
- diarrhea
- constipation
- nausea
- fatigue (lack of energy)
- anemia (low levels of red blood cells)
- insomnia (trouble sleeping)
- vomiting
- loss of appetite
- feeling weak
- neutropenia or leukopenia (low levels of white blood cells)
- muscle cramps or spasms
- upper respiratory infections, such as the common cold
- infections in your lungs or digestive tract
Most of these side effects may go away within a few days or a couple of weeks. If they’re more severe or don’t go away, talk with your doctor or pharmacist.
Serious side effects
Serious side effects from Revlimid aren’t common, but they can occur. Call your doctor right away if you have serious side effects. Call 911 if your symptoms feel life-threatening or if you think you’re having a medical emergency.
Serious side effects and their symptoms can include:
- Liver failure. Symptoms can include:
- nausea
- fatigue
- diarrhea
- jaundice (yellowing of your skin and the whites of your eyes)
- swelling in your legs or belly
- Tumor lysis syndrome (a serious condition caused by the breakdown of cancer cells). Symptoms can include:
- tiredness
- fast or irregular heart rate
- passing out
- trouble urinating
- loose stools
- muscle weakness or cramps
- upset stomach, vomiting, or lack of appetite
- Serious skin reactions, including Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN). Symptoms can include:
- sores in your mouth
- a red or purple skin rash that spreads
- hives
- blistering or peeling of your skin
- Tumor flare reaction (an immune system reaction). Symptoms can include:
- fever
- rash
- lymph nodes that feel tender or swollen
- decreased levels of lymphocytes (a type of white blood cells)
- Thrombocytopenia (low levels of platelets, a type of blood cell). Symptoms can include:
- petechiae (a rash with small red or purple dots)
- purpura (purple, red, or brown bruises)
- bleeding gums
- nosebleeds
- heavy menstrual bleeding
- blood in your stool or urine
Serious side effects, explained in more detail below in “Side effect details,” can include:
Side effect details
You may wonder how often certain side effects occur with this drug, or whether certain side effects pertain to it. Here’s some detail on several of the side effects this drug may or may not cause.
Skin rash
Skin rash can occur in some people taking Revlimid. In clinical studies of people taking Revlimid, skin rash occurred in:
- 26% of people with multiple myeloma taking Revlimid immediately after diagnosis
- 32% of people with multiple myeloma taking Revlimid after auto hematopoietic stem cell transplant (auto-HSCT)
- 21% of people with multiple myeloma taking Revlimid after receiving at least one past treatment
- 36% of people with myelodysplastic syndromes
- 22% of people with mantle cell lymphoma
- 22% of people with follicular and marginal zone lymphomas
For many people, the skin rash is mild and goes away on its own. However, in some people, the rash is severe or doesn’t go away. A rash can be a symptom of a more serious side effect from Revlimid.
Tell your doctor if you have a skin rash after taking Revlimid. They can determine if you’re having an allergic reaction to Revlimid or if the rash is a symptom of another serious side effect. Your doctor may also adjust your dosage of Revlimid to make sure it’s safe for you. They can also recommend ways to soothe your skin rash.
Fatigue
You might experience fatigue (a lack of energy) while taking Revlimid. In most cases, fatigue isn’t considered a serious condition.
In clinical studies of Revlimid, fatigue occurred in:
- 33% of people with multiple myeloma taking Revlimid immediately after diagnosis
- 23% of people with multiple myeloma taking Revlimid after auto-HSCT
- 44% of people with multiple myeloma taking Revlimid after receiving at least one past treatment
- 31% of people of people with myelodysplastic syndromes
- 34% of people with mantle cell lymphoma
- 37% of people with follicular and marginal zone lymphomas
If you have fatigue that doesn’t go away, talk with your doctor about how to cope with it.
Diarrhea
Revlimid may cause you to have diarrhea for a few days after taking a dose. In clinical studiesof people taking Revlimid, diarrhea occurred in:
- 45% of people with multiple myeloma taking Revlimid immediately after diagnosis
- 54% of people with multiple myeloma taking Revlimid after auto-HSCT
- 39% of people with multiple myeloma taking Revlimid after receiving at least one past treatment
- 49% of people with myelodysplastic syndromes
- 31% of people with mantle cell lymphoma
- 32% of people with follicular and marginal zone lymphomas
Symptoms of diarrhea can include:
- frequent need to empty the bowels
- fever
- nausea
- pain in your abdomen (belly)
- muscle cramps
- dehydration (water loss in the body)
- bloating (belly feels tight or full)
- large stools
- blood in your stool
Diarrhea that goes away within a few days and that doesn’t affect your daily activities isn’t usually considered harmful. However, severe diarrhea can lead to other issues that can be harmful.
Tell your doctor if you have severe diarrhea for more than 2 days. They may prescribe medication to help relieve your symptoms or suggest a nutritional plan to help treat your diarrhea.
Febrile neutropenia
Revlimid can cause neutropenia (low levels of white blood cells). In some cases, neutropenia can lead to febrile neutropenia, which is a rapid rise in body temperature. People with febrile neutropenia have a fever higher than 100°F (38°C) for more than 1 hour.
In clinical studies of people taking Revlimid, febrile neutropenia occurred in:
- 1% of people with multiple myeloma taking Revlimid immediately after diagnosis
- 2% to 17% of people with multiple myeloma taking Revlimid after auto-HSCT
- 2% of people with multiple myeloma taking Revlimid after receiving at least one past treatment with a different drug
- 5% of people with myelodysplastic syndromes
- 6% of people with mantle cell lymphoma
- 2.8% of people with follicular and marginal zone lymphomas
Symptoms of febrile neutropenia can include:
- fever higher than 100°F (38°C) for more than 1 hour
- infections in the lung, sinus, ear, gums, or navel (belly button)
- pain or soreness in your body
- skin bumps
Febrile neutropenia can be dangerous. High fever can lead to symptoms such as headaches, weakness, and severe infections. In some cases, it can even cause death.
Call your doctor if you have symptoms of febrile neutropenia, especially if you have a fever above 100°F (38°C) for more than 1 hour. Your doctor can prescribe medications to treat your symptoms and help lower your fever.
Deep vein thrombosis
Some people taking Revlimid can get deep vein thrombosis (DVT). This condition occurs when a blood clot forms in your veins. The blood clot doesn’t allow blood to move through the vein, so the blood can’t reach all your organs and cells.
In clinical studies, only people with certain conditions who were taking Revlimid had DVT. These included:
- 10% of people with multiple myeloma had DVT when taking Revlimid immediately after diagnosis
- 7% to 9% of people with multiple myeloma had DVT while taking Revlimid after receiving at least one past treatment with a different drug
- 4% of people with mantle cell lymphoma had DVT while taking Revlimid
- 3.4% of people with follicular or marginal zone lymphomas had DVT while taking Revlimid
Symptoms of DVT can include:
- swelling in your legs or arms
- muscle cramps
- deep pain in your legs, ankles, feet, neck, or shoulder
- changes in your skin (feeling warm, having red or blue coloring, or having pale or dark patches)
- unexpected pain in your neck or shoulder
- weakness in your hand
DVT can be very serious. It can cause heart problems that can be life-threatening. Tell your doctor if you’re having symptoms of DVT. They can prescribe medication to help relieve your symptoms and treat your DVT. Call 911 if your symptoms feel life-threatening or if you think you’re having a medical emergency.
Pulmonary embolism
Revlimid may cause a pulmonary embolism. Pulmonary embolism occurs when a blood clot forms in the arteries of your lungs. The blood clot blocks your arteries and doesn’t allow blood to move through them.
In clinical studies of people taking Revlimid, pulmonary embolism occurred in:
- 4% of people with multiple myeloma taking Revlimid after trying other medications that were not effective
- 2% of people with myelodysplastic syndromes
- 2% of people with mantle cell lymphoma
- 2.3% of people with follicular and marginal zone lymphomas
Symptoms of pulmonary embolism can include:
- shortness of breath
- weak pulse
- irregular or rapid heartbeat
- clammy or bluish skin
- feeling lightheaded
- feeling anxious or not being able to relax
- intense pain in your chest
- fainting
- spitting up blood
Pulmonary embolism can lead to death if untreated. Tell your doctor right away if you’re having symptoms of pulmonary embolism. They can prescribe medication to help relieve your symptoms and treat your pulmonary embolism. Call 911 if your symptoms feel life-threatening or if you think you’re having a medical emergency.
Heart problems
Revlimid can cause heart problems such as atrial fibrillation (irregular heartbeat). These problems are more common in people taking Revlimid to treat multiple myeloma.
In clinical studies, 7% of people with multiple myeloma taking Revlimid for the first time had atrial fibrillation. In this same group, 1.4% of people with multiple myeloma taking Revlimid had heart attacks.
Atrial fibrillation occurred in 4% of people with multiple myeloma taking Revlimid after receiving at least one past treatment with a different drug. In this same group, 1.7% of people taking Revlimid had heart attacks.
Less than 5% of people with multiple myeloma taking Revlimid for myelodysplastic syndromes had atrial fibrillation or heart attacks.
Symptoms of heart problems can include:
- fatigue (lack of energy)
- feeling weak
- feeling dizzy or lightheaded
- fainting
- not feeling strong enough to exercise as usual
- shortness of breath
- confusion
- bluish skin color, especially on the lips, gums, fingertips, or around the eyes
- heart palpitations (feeling of skipped or extra heartbeats)
- intense pain in your chest
Heart problems can be very serious and even fatal (cause death). Call your doctor right away if you have any of the symptoms listed above. They can prescribe medication to help relieve your symptoms and treat your heart problems. But if your symptoms feel life-threatening or you think you’re having a medical emergency, call 911 or go to the nearest emergency room.
Stroke
Revlimid may cause a stroke in some people taking Revlimid for multiple myeloma. A stroke occurs when your blood can’t reach your brain. This means your brain doesn’t receive enough oxygen, and brain cells start to die. A stroke can be life-threatening if not treated immediately.
In clinical studies, about 2% of people with multiple myeloma taking Revlimid after trying other medications that were not effective had a stroke. Stroke wasn’t a side effect for people who took Revlimid to treat other conditions.
Symptoms of a stroke can include:
- intense headache, vomiting, and nausea
- dizziness
- trouble walking, losing your balance, or lack of coordination
- vision problems (darker or blurred vision)
- trouble speaking or understanding others
- numbness or not being able to move parts of your legs, arms, or face (especially on one side of the body)
Call 911 or go to the nearest emergency room right away if you think you’re having a stroke
