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| Happy International Women's Day! Enjoy yourself. But drink that wine in moderation! |
As you know, there are 1.5 female ET patients to every male--that is, about 65 percent of patients with ET are women. So, on this International Women's Day, let's take a look at some of the challenges women ET patients face.
Women diagnosed with ET in their childbearing years need to be aware that taking chemo can cause serious birth defects. However, interferon-based drugs such as Pegasys, may be taken without harming fetal life. Discuss this with your doctor! Anecdotally, younger women with ET who are not on medication may run a higher risk of miscarriage or experience more bleeding during their menstrual cycles.
Younger ET patients who hope to become parents should also understand that the ET is caused by somatic mutation, that is, one that is not passed along genetically. But because ET (and other MPNs) seems to run in many families, researchers theorize that the children of parents with ET may inherit a sensitivity to developing ET later in life if exposed to unknown carcinogens in the environment.
Most women are diagnosed with ET in late middle age, and their symptoms--headaches, brain fog, fatigue, "the blues," and bone pain--may be dismissed as menopausal. Unless the doctor does regular CBCs that would show a steady increase in platelets, a woman might go undiagnosed until a clot occurred.
Back in 2015, a small study examining risks in ET patients noted that 25 percent of patients had had a clot before they were diagnosed, and another 20 percent had clots at the time of their diagnosis. An earlier diagnosis and aspirin and/or chemo might have prevented these clots from occurring.
The good news for women is that a study by the Mayo Clinic and others showed that women live longer with ET than men--longer by about six years. Those studies suggested that gender be added as a factor to the IPSET score, the scale used by your doctor to determine whether you are a low, intermediate, or high-risk patient.
So: How can you celebrate International Women's Day with ET? Some suggestions appropriate for women and men:
- Tell your kids and siblings about possible inherited risks for developing ET later in life.
- Educate yourself about the carcinogens in your environment that could be triggers for ET. Discuss your concerns with local and regional lawmakers. Or join a local environmental group in your area.
- Ask your hematologist about platelet-lowering drugs that are best for you. Nobody wants to take chemo, but there is a lot of misinformation out there that makes patients reject therapies that could help prevent a major stroke or dangerous clot in the lungs or heart.
- If you are on hydroxyurea or another chemotherapy, buy yourself some good sunscreen and a nice hat. Even though I'm looking out at six inches of snow in my yard, I can prepare now for those nice days I want to be in my garden. (Bald guys, take special care with sunscreen and head covers!)
- Make a list of ways you can reduce your overall clot risks. Discuss your cholesterol levels with your family doctor and ask about dietary changes to control it if it is high. Get 20 minutes of aerobic exercise every day to improve circulation and control weight. Get to a healthier weight. Quit smoking. Don't drink excessively.
- Eat healthier. Many ET patients have enlarged spleens that make them feel full very fast. Eating four or five small meals a day may help. Mediterranean or anti-inflammatory diets can also offer healthier eating patterns. These diets are usually more generous in vegetables and nuts, and lower in starchy foods and sugars. They emphasize smaller portions of lean meat and dairy products. Cutting back on sugar and salt can also improve energy levels and help control blood pressure.
- Reduce stress. Way easier said than done, but researchers continue to focus on the role stress plays in making diseases worse. Listen to music, join a support group, read a favorite book, have a cup of tea or coffee in the fresh air, visit a friend, write a letter, join a yoga class, knit--you've got resources, as they say. Use them.
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ET is a serious disease that requires specialist care. Discuss anything you read here with your doctor. No comments promoting "alternative" or "natural" cures (yes, this includes Rick Simpson's Oil) will be published.