Seven wishes about ET

In the six years since I started writing this blog, I've talked to hundreds of ET patients online here and through my Facebook page. 

Besides sharing our ET diagnosis, we all seem to share some common wishes as ET patients. So I thought I'd start out 20201 by offering the seven things I wish about ET that I think I share with most of you: 

Wish 1: I wish that health care providers understood that lack of information is the worst "side effect" of having ET. I hear something like this from a lot of my fellow patients: "I was just diagnosed with ET, and my doctor says he's not worried about it. But then I read online that I have cancer! I am really scared now!" Please, health care providers: Five minutes of clear, brisk info and a fact sheet would go a long way toward  helping us better understand our disease. 

Wish 2: I wish more ET patients understood what symptoms to report to their hematologists. Once you have an ET diagnosis, it's easy to wonder if every pain, twinge, and rash might be ET-related. It would be helpful for patients to know what symptoms are typical (for example, fatigue, mild itching or dizziness), when you should call the doctor (for example, bone pain or some kind of worsening trend in your blood counts), and what you need to go to the ER for (for instance, stroke symptoms or uncontrolled bleeding). Again, that fact sheet in Wish 1 would help a lot. 

Wish 3: I wish that doctors would stop using inadequate and misleading analogies to talk about ET. Doctors often try to reassure ET patients by calling it a "benign" cancer or "cancer with a small c" or (my favorite) "a good cancer." No cancer is benign or good. And it is not that hard to explain to patients that they have a rare bone marrow cancer that can be managed with monitoring and medication, and that it is likely they will live out a normal life span. There, I just did it in under 30 words, and I'm not a doctor.

Wish 4: I wish that ET patients would stop looking for "natural cures." "Natural cures" for ET don't exist--not cannabis, not turmeric, not rigorous workouts at the gym, not anti-inflammatory diets, not getting rid of the toxic people in your life, not red wine--none. There are, however, lots and lots of Web sites and alternative practitioners happy to tell you that they have a natural cure in order to take your money. All that said, there are some "natural" lifestyle changes ET patients can make to help manage symptoms. And that brings me to Wish 5 ...

Wish 5: I wish that health care providers would discuss clot risks and the way diet, exercise, and sleep can help. ET increases your risk for having a blood clot, so it seems fairly obvious that doctors would discuss with patients ways that they can reduce overall clot risks. But many hematologists don't seem to cover this with patients. In the six years since I was diagnosed with ET, I've made some lifestyle changes for the better. I wear a pedometer and make sure I get two miles of walking in over the course of a day. I try to get a good amount of sleep and not let myself get over-fatigued. Yoga, which has been proven to improve ET symptoms for those who are carrying some extra pounds. I try to get at least 15 minutes of fresh air outdoors, even in winter, which clears away the brain fog and can energize me. And I eat a diet high in fiber and low in saturated fats and sugar, which also helps with fatigue and may help lower clot risks.   

Wish 6: I wish ET patients had better information about the risks/benefits of long-term chemo treatments. When I was prescribed HU (also known as Hydrea or hydroxyurea), I got no information from the doctor or nurse other than that it was a mild form of chemo and that I would have no side effects. That information was inadequate on a number of levels. First off, I actually felt better on HU. I wasn't expecting that because I was thinking of the infused chemo that acute cancer patients get that usually makes them very sick. I had no side effects for a few years, but have since noticed some hair loss (normal) and dry skin (also normal). Other patients have more pronounced side effects on their ET meds. Once chemo is prescribed, most ET patients will take it for the rest of their lives. They need better information to understand how it will help them, and what they might encounter.   

Wish 7: I wish ET patients could better afford their medications and MPN specialists. I hear from people all around the world on the Facebook page, and one of the primary worries is the affordability or availability of medication or a doctor with a special interest in MPNs. Even in parts of the world with strong national health care systems where cost is less of an issue, access to a specialist can or certain medications can be difficult.

If you are a new ET patient, please check out the info links at right. They will lead you to reliable information about ET. You can also visit the Got Thrombocytosis? Facebook page to interact with other patients. 

And now it's your turn: What are your wishes about ET? Add them in the comments below and, of course, be well!