Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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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
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.
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.
Let me know if you have any questions. Hang in there.
“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 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…
The more common side effects of Revlimid can include:
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 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:
Serious side effects, explained in more detail below in “Side effect details,” can include:
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 can occur in some people taking Revlimid. In clinical studies of people taking Revlimid, skin rash occurred in:
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.
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:
If you have fatigue that doesn’t go away, talk with your doctor about how to cope with it.
Revlimid may cause you to have diarrhea for a few days after taking a dose. In clinical studiesof people taking Revlimid, diarrhea occurred in:
Symptoms of diarrhea can include:
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.
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:
Symptoms of febrile neutropenia can include:
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:
Symptoms of DVT can include:
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.
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:
Symptoms of pulmonary embolism can include:
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.
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:
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.
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:
Call 911 or go to the nearest emergency room right away if you think you’re having a stroke