Some treatments for myeloproliferative neoplasms (MPNs) have been around for decades, while others are relatively new. Depending on your symptoms and disease progression, treatment options may include:

• Antibiotics and antiviral drugs to fight infections
• Blood transfusions to increase platelet or red blood cell levels
• Bone marrow transplant for a potential cure of MPNs
• Chemotherapy to control abnormal cell growth
• Growth factors to boost red or white blood cell counts
• Phlebotomy to remove red blood cells and reduce clots
• Medication to lower red blood cell production or release red blood cells from bone marrow
• Medication to target the effects of genetic mutations associated with MPNs

Maintaining a big picture perspective and focusing on the intended benefits your treatments can provide may help you accept and overcome any challenging side effects.

To learn more about MPN treatment side effects, myMPNteam spoke with Dr. Andrew Kuykendall, a clinical researcher and physician at the Moffitt Cancer Center in Tampa, Florida.

Dr. Kuykendall discussed some of the typical and lesser-known side effects of MPN treatments. For example, when asked about hydroxyurea, Dr. Kuykendall noted mouth ulcers as a common issue, particularly at higher doses. Less common (seen in about 5 percent of people) is the side effect of chronic ankle ulcers. “It typically does not get better until patients come off the medication,” he explained about ankle sores. “But once they come off the medication, it heals nicely.”

Dr. Kuykendall emphasized the importance of counseling his patients on all potential side effects so they can be identified and addressed right away. Here are some of the side effects to watch out for and tips on how to manage them.

Gastrointestinal Side Effects

Taste changes, mouth sores, and digestive issues, like diarrhea and constipation, are typical side effects of chemotherapy treatments and bone marrow transplants. Members of myMPNteam discuss how they deal with these common symptoms. Some of their advice has included:

• “I take Pepcid twice a day. It seems to help that nauseous stomach. Sometimes, I add a couple of Tums, too, especially at bedtime. I always take my meds with food. If I take them on an empty stomach … nausea!”
• “Early on, hydroxyurea gave me an upset stomach, but once I started to take it before bed, I didn’t notice.”

Reaching out for the support of an oncology dietitian can help equip you with strategies to stay nourished and maintain a good quality of life through cancer treatment.

Physical and Mental Fatigue

MPN treatment can take a lot out of you, both physically and mentally. Dr. Kuykendall noted that fatigue is one of the most common symptoms he sees with MPNs, either as a symptom of the disease, a side effect of treatment, or an “intersection of both.”

For example, drugs like interferon-alpha, Gleevec (imatinib mesylate), and anagrelide are known to cause physical and mental effects, including:

• Body aches
• Depression
• Dizziness
• Drowsiness
• Inability to concentrate
• Joint pain
• Memory issues
• Reduced physical strength
• Sleepiness
• Swelling of the extremities

Dr. Kuykendall explained that aside from medication recommendations, he promotes lifestyle changes, including “good sleep hygiene, exercise, yoga, and a healthy diet” to help people with MPNs maintain higher energy levels. He also explained that sometimes fatigue can feel more like the type of weakness experienced with a virus or a cold.

On myMPNteam, members connect to discuss how to deal with MPN symptoms and cancer treatment side effects. One member asked:

“My biggest hurdle on most days is fatigue. I still work full time, so taking extra time during the day to rest or lay down isn’t always an option. What are some of your best ways to combat fatigue? I can’t imagine having another cup of coffee is a best practice.”

Others responded with suggestions including:

• “I found that dates, figs, apricots, and pomegranate juice all boost my hemoglobin. When I started, my level was around 9. At one point, I got up to 11.5 or so. Better than Procrit injections!”
• “Honestly, I have had the best results combating fatigue by chugging LOTS of water. I generally don’t drink enough, and I finally realized that dehydration was amplifying all of my symptoms. Ditch caffeine and definitely have water first thing in the morning and last thing at night. Hope this helps you!!!”
• “I fight fatigue with sewing, quilting, cross-stitching, and any kind of hand activity. I also started a yoga program and continue on my own. It’s amazing how much it helps.”

If you’re not feeling like yourself during MPN treatment or after a bone marrow transplant, there’s a good chance you’re experiencing side effects that are largely temporary. However, it may be necessary to take a step back at work or recruit additional help around the house as you focus on your health.

Members of myMPNteam also offer tips for dealing with symptoms like swelling. One member wrote:

“My feet are swelling now, too, but my doctor asked me to get compression socks, which I have purchased. They seem to be helping with my foot swelling. I got some really crazy colors, too. It was fun shopping for them.”

Finding ways to ease your side effects can help you stay positive until they subside.

Sexual Health Side Effects

Talk to your health care provider to learn about ways you can preserve your fertility before chemotherapy or radiation, as these can cause temporary or permanent damage to sperm production and ovarian function. Even if you’re able to get pregnant, you may be advised to hold off for six months until MPN medications like hydroxyurea have had a chance to clear from your system to prevent potential birth defects.

For women, the hormonal effects of treatment can lead to the early onset of menopause, and antibiotic treatment may increase yeast infections. In men, ejaculation changes, difficulty keeping an erection, and abnormal sperm may result. Additionally, physical changes like hair loss, weight changes, or low energy levels can leave you feeling less interested in sex and intimacy. Communication and compassion (for yourself and your partner) are essential for overcoming the added strain of MPN treatment on relationships.

Potential Long-Term Side Effects

Although most side effects should lessen with time, potential long-term effects may include thyroid issues, other cancers, infertility, and cataracts. Your health care provider can help you understand your risk factors for certain side effects so you can accurately weigh the risks and benefits of different treatment options.

Precautions

The side effects of MPN treatments can put you at a higher risk of skin cancer, infections, and other health concerns. Here are some smart precautions to take while you’re undergoing treatment.

Practice Sun Safety

Some medicines for MPN, including hydroxyurea and ruxolitinib (Jakafi), can raise your risk of skin cancer. Staying away from the sun, wearing sunscreen and protective clothing, and getting preventive skin checks can help keep you safe.

Wash Your Hands

If your treatment plan includes chemotherapy or a bone marrow transplant, you’ll need to be vigilant about protecting yourself against germs. Frequent handwashing, cooking food thoroughly, and avoiding high-risk social situations are crucial while your immune system is in a vulnerable state.

Use Birth Control

Experts advise using a reliable form of birth control during treatment and for at least six months afterward to prevent pregnancy until it’s considered safe to conceive. Discuss a plan with your doctor to avoid an unexpected pregnancy for you or your partner.

Be Mindful of Medication Interactions

Always let your provider know about any over-the-counter medications or supplements you plan to take while undergoing MPN treatment. Because grapefruit and grapefruit juice interact with several medications (including anagrelide), it’s best to avoid these for the time being.

Get All Recommended Testing

Your doctor will likely recommend regular testing to monitor for potential side effects. Don’t miss these appointments, which will help your health care team monitor for the development of side effects or complications. “With some medications, we watch out for lab abnormalities such as liver enzyme elevations,” explained Dr. Kuykendall. “We’re looking at uric acid levels. We’re recommending eye exams yearly.”

When To Seek Emergency Assistance

Some side effects are to be expected, and others warrant immediate medical attention. Don’t hesitate to call your doctor or seek emergency treatment if you experience:

• A body temperature of 38 degrees Celsius (100.4 degrees Fahrenheit) or higher
• A headache that doesn’t go away
• Coughing or trouble breathing
• Persistent bleeding through a bloody nose, bleeding gums, or blood in the urine or stool
• Severe nausea or vomiting, especially if you can’t eat or keep your meds down
• Signs of infection, like swelling, pus, pain, or redness
• Skin rash or itching
• Uncontrollable shivering

In addition, always contact your doctor if you accidentally injure yourself because MPN treatment can put you at a higher risk of bleeding or infection.

Talk With Others Who Understand

On myMPNteam, the social network for people with myeloproliferative neoplasms, more than 1,900 members come together to ask questions, give advice, and share their stories with others who understand life with MPNs.

Have you experienced side effects from MPN treatments? Do you have any advice for managing them? Share your tips in the comments below, or start a conversation by posting on myMPNteam.