MPN "specialists" and support groups

Things you hear about MPN "specialists" and other ET-related
issues on social media (including this blog) are usually things
you need to learn more about and discuss with your doctor. 

If you follow online support groups for people with ET or MPNs generally, you'll eventually encounter people who urge everyone to see an MPN specialist. Often, when people complain about their doctors, the first question others will ask is, "Is he/she an MPN specialist?"

I've been following these conversations for over a year, and I think we need to understand that there is no such thing as an MPN "specialist," and that things we hear in support groups (or on this blog that you're reading right now) are things we need to learn more about.

Chronic cancer in the workplace

ET fatigue and other symptoms can create problems for
workers with chronic diseases.

How many people reading here have quit working, taken early retirement, changed to less stressful jobs, or cut back work hours due to ET? I've done All of The Above. And I'm not aone.

The MPN Research Foundation shared a story from the Minneapolis Star Tribune about the plight of acute cancer patients for whom Americans with Disabilities Act protections are inadequate. The story touches on the complex problems cancer treatment poses for workers and employers: Some workers come out of cancer treatment unable to do their jobs, some workers need more than the 12 weeks of unpaid leave the ADA offers, and some patients are fired at the end of their leave period, losing their health care insurance. This can be financially disastrous for patients who want to work, but it's also difficult for employers who have obligations to meet, and have to hire interim help or train new employees.

Working is even more complicated for chronic cancer patients like those of us who have ET, especially younger ones. Federal work leave requirements allows us to take time off to get used to a new chemo or medication. (I took a week off work when I started hydroxyurea. Even though I was only working part-time by then, my employer was very supportive.)

Charting fatigue levels

How is a gear stick related to your ET
fatigue? Read on to think about
developing your own way to gauge
and chart symptoms.

Has your hematologist ever asked how you've been feeling and you haven't been able to give a good answer? Or you tell her how you are feeling that particular day, but you have an idea that that's not really typical for you. Too many hematologists already think that ET patients don't have symptoms, and if you start hemming and hawing when asked about them, it can confirm this belief.

Charting symptoms like fatigue levels can be a good way to help you gauge what's average for you so that you can give the doctor better info. It can also help you spot patterns--times or triggers that make your symptoms worse.

To help me figure out a consistent way to gauge my fatigue, I devised a five-point scale based on the old "four on the floor" stick shifts I used to drive:

Park (Neutral). I spend most of the day parked in bed or on the sofa reading or watching TV. I don't get dressed, and even washing up or making a meal seems like too much. I don't do any exercise. I have brain fog most of the day and feel disorganized. Sometimes I feel like I'm getting sick.

ET and stress

Having comic relief in stressful times can

help you cope.

 There's a lot of talk about the role of stress in cancer. Teasing out how stress might trigger or worsen cancer involves a lot of Complicated Science, and no one really knows the extent to which stress affects patients like us.

Certainly we all feel worse when we're stressed out. And science has discovered a link between stress and some ailments such as psoriasis and migraine headaches. Stress also plays a role in platelet levels. My GP tested my platelets for a few months because I had been stressed out about a heart problem. But when they stayed high and went higher, she sent me to the hematologist, and that's when I got my ET diagnosis.

About six weeks ago, I saw firsthand how stress can increase ET symptoms when my mother died. I also officially retired a couple of weeks after that. And Mom named me as executor of her will. So for the past month and a half, I was busy getting her house ready for out-of-state family members, planning a funeral and making arrangements, talking to a lawyer, and trying to make sense out of Mom's estate.

Yes, ET is cancer. Why is that so important?

Do you ever feel like this when you're trying to come to
terms with your ET diagnosis? Yes, I thought so.

I belong to and participate in some of the private Facebook support groups for ET. When new people come on line, one of the first questions is often this: "What's wrong with me? Is ET cancer or not?"

Often the confusion arises when doctors tell patients that they have a "disorder" or a "pre-cancer" or "cancer but not really cancer," or (weirdly) a "benign cancer." Then they look up their disease on line, and find out that ET is a "rare, chronic blood cancer."

And they freak out.

It's beyond me why doctors don't realize that, when they give patients vague info, those patients are going to go online. And that's not going to make the doctor's life easier. But that's a doctor problem.

When new people ask the "is it cancer?" question, support group members often jump in and very vehemently affirm that ET IS cancer.  I wanted to learn more about why patients feel this is so important.

Golden retrievers may hold cancer keys

A study of 3,000 golden retrievers in the U.S. may eventually help researchers understand the role that environmental factors play in spontaneous mutations like the ones that cause ET. (And, yes, dogs can get ET, though instead of coming with clot risks, canine ET more often results in inflammatory disease.)

Dogs and humans share as many as 500 diseases in common, and dog studies have already been parlayed into treatments for some cancers in humans. NBC news reported  that Emily Brown, who suffered from a terminal type of bone cancer, was treated with an immunotherapy designed for dogs.  She has lived for 20 years since receiving that therapy.

According to the Washington Post, cancer is the leading cause of death in all dogs after age 2. Sixty percent of golden retrievers, according to a CBS report, get some form of cancer in their lifetimes. (Here's a healthy but somewhat hyper goldie in the video below!)

Family viewing , triaging, and MPN tracking

I found a really good video that you may want to view with your family that explains a lot about MPNs, why we're tired, and how it affects our lives. The speaker is Dr. Robyn Scherber, Mayo Clinic MPN expert. Even if some of the science is over your head (and I admit it's often over mine, which is why I have a doctor ...), the 30-minute video covers a lot of ground. It will help your family understand that, even though we don't look sick, we are often jealous of our time and energy.

As always, many thanks to MPN Advocacy & Education International for making these conference videos available! They are linked in the Resources list at right.