MPN Research Foundation/Incyte survey of MPN patients

OK, let me say up front that I am leery of giving info to Big Pharma like Incyte, the manufacturer of Jakafi. However, with Jakafi poised to be approved for use with some forms of ET at a price tag of $7,000 per month, I think the company needs to know that a lot of us won't be able to afford it. 

So I did take the survey co-sponsored by Incyte and the MPN Research Foundation as advertised on Facebook:

A research study (sponsored by Incyte Corporation) is being conducted to learn more about the impact of MPNs on patients’ lives. Incyte is seeking patients aged 18 to 70 with MF, PV or ET to participate in a one-time, 30-minute online survey about how your condition has affected your work, finances, and quality of life. If you are eligible and complete the survey, you will be compensated. For more information, please visit: https://www.surveymonkey.com/r/VX27NG2

The survey takes about 10 minutes to complete, and collects info about your household income and how ET has affected your work and lifestyle. This seems to be for patients in the U.S. only (the first question requires that you confirm you live in the U.S.).

Related: New York Times editorializes on drug costs
Related: Jakafi, oral chemo, and drug costs

Home

Nix on blood and organ donation

Even if you can't donate organs,
you can get a cup, pin, or shirt to
raise awareness about donor needs
at the Donate Life America site.

April is National Donate Life Month, and that might be a good time to remind those of us with ET that we should probably NOT be signing up for organ donations or giving blood, though, as always, check with your doc first.

The American Cancer Society offers cancer patients interested in donation some general donation guidelines, and the rule of thumb seems to be that you are not a good candidate for organ donation if you have an "active" cancer. ET and other MPNs are always "active" because they're chronic and there is no cure.

ET can also affect the liver, spleen, and bone marrow, so those tissues might not be healthy enough for donation.

While it's rare, cancers from donors have shown up in recipients. Researchers think that this could be because many recipients have to take anti-rejection meds, which lower their immunity and perhaps make it easier for the transmission to occur.

So, to keep everyone healthy, blood and organ donations are probably off the table for us.

The good news is that you can still support donation and medical research in other ways:

1. Volunteer to work at an an organ donation sign-up event. My college has a yearly bone marrow donation registration drive, and I'm happy to use class time to let the students sign up. They fill out a short form, the tech takes a cheek swab. They're back in class in five minutes.

2. Volunteer to help at or publicize a local blood drive.

3. Make financial contributions to the American Red Cross or your state/local organ donation organization.

4. Wear a Donate Life pin if you've got one. A co-worker whose husband had a heart and kidney transplant gave me one years ago, and I still wear it throughout April. Many people ask me about it and several have talked to their families and signed their donor cards. (Michigan makes it easy to indicate your willingness to be a donor by signing the back of your drivers license.)

5. Donate your body to medical science. The Huffington Post has a great informative essay on the how-to's of body donation. This idea used to give me the creeps, but, dammit, I've got a really rare disease, and I ought to be interesting as hell to some young medical student who wants to "look into it" in depth. Plus, whatever school you donate to (you do have a choice) will cremate you and return your remains to your family at no expense. So, if you have cheapskate tendencies like me, you can save your family a bundle "when the time comes."

Be well!

Home

Up in smoke? Medical marijuana and ET

I live in a state that approved medical marijuana, and, within weeks of legalization, clinics sprang up where you could pay a doctor $100 up front, get a "diagnosis," and smoke your dope legally. It was something of a debacle. People were getting authorization cards for everything from migraines to back pain to PMS. For a term or two, I had students wafting enough dope smoke into my classroom to give everybody a contact high. I had no idea there were so many suffering college students ...

It's been 30 years since I had a toke, but I honestly see nothing wrong with legalizing recreational use of marijuana and taxing it like liquor. But I'm also pretty leery of using marijuana as a treatment for ET, especially after doing some looking around on the Internet.

Google "essential thrombocytosis" and "marijuana," and you'll be inundated with lots of hits (no pun intended) for sites that make a lot of wild claims about cures and symptom management that look like they're designed to prey on desperate people. But there is some reliable info, and here's what I found:

A cuppa cuppa cuppa cuppa cup

Happy Drogo's Day, patron saint of coffee, coming up April 16.

As far as I know, St. Drogo never drank coffee, but he was reported to have been able to bilocate, which means he could zip around in two places at once to multi-task, Hence the connection with the effects of caffeine if not the actual drink.

Anyhow, whether you're into Catholic saints or not, make this Saturday a day to treat yourself to an extra special blend or brew. I'll have one with you. It could be a thing! A Coffee-Drink-In shared with ET patients worldwide!

And don't forget to thank whatever Higher Power you believe in for that friendly cuppa joe that refreshes and enlivens.

Prefer to offer your thanks in song? Here's "The Java Jive" by the Ink Spots. Is there anything that these guys can't make better with their extra smooth latte harmonies? No. There is not.

Be well and pass the percolator!

Home

What patients say about Hydrea

No, it's not Hydrea, it's a hydrangea,
which is prettier, though Hydrea capsules
are also sometimes pink and blue.

Hydrea (hydroxyurea) is the go-to drug used with ET if platelet counts go too high, and many patients fear it because it usually comes with some side effects AND because it may be linked to an increased risk for developing leukemia, though research isn't conclusive.

The Mayo Clinic lists side effects of Hydrea here. But a Web site called Ask a Patient collects comments from patients themselves about how they've responded to various drugs, including Hydrea, and I'm sharing what I got from that site in this post.

To put info together, I looked only at ET patients (not those with other MPNs or sickle cell anemia), since people with other diseases might respond differently to Hydrea. I also looked only at patients who have been taking Hydrea for more than three months, about the time it takes for the drug to work and for side effects to settle down.

And here are a bunch of qualifiers, caveats, and blah blah to think about.

First is that some of the side effects that patients reported are actually symptoms of ET, such as dizziness and fatigue. So disease or drug? Not clear.

Second is that Hydrea doesn't affect everybody the same way or with the same intensity; length of time on the drug and dosage may make a difference.

Third, women on Hydrea outnumbered men by about five to one, and most people were middle-aged (between age 40 and 67). So hair thinning and skin problems? Maybe a function of age as much as meds. (Ladies, once we get to a Certain Age, waking up one morning to find you suddenly look like your mother's older sister is not that uncommon now, is it?)

So, all that said, here's what I found out:

My self-improvement kick #3: Reading my way out of lethargy

Awhile back, I posted Dr. Ruben Mesa's 10 tips for fighting fatigue. One of them is spending less time on your computer and more time reading. I'm not sure that reading actually fights fatigue, but it does fight lethargy by improving concentration.

My recommended reading dose for lethargy is one or two chapters of something interesting. You'll either feel energized enough to get something done. Or you'll spend the rest of the day reading. Either way, you will feel less guilty for "wasting time," a feeling that plagues a lot of us ET orphans.

So in this installment of my self improvement kick, let me share some recent books to inspire you to get your own reading list going:

Carsick by John Waters. John Waters, whose compassion and admiration for the for the truly weird and grotty is legendary, decides to hitchhike from Baltimore to San Francisco. It's not something most of us with ET would have the energy to do (and probably not with John Waters, who, admittedly, is not for all tastes). But Waters sure knows how to write a travelogue. In fact he writes three: In the first part of his book he imagines his proposed trip's best and worst outcomes. Which, if you're familiar with Waters, aren't really that different; his imaginary stint with a carnie named Polka Dottie is memorable, but I can't remember if it was part of the best or worst imaginary trip. The real trip turns out to be less weird and a quite touching homage to the kindness of strangers. Added bonus: Waters offers his list of travelin' songs so you can make your own mix tape for your own road trip.