More diversity in clinical trials needed and other stories

The New York Times has a flurry of
end-of-the-year stories of interest to 
you as an ET patients. Hint: One of 
them tells you to quit sitting around
all the time.

Newspapers often sit on some really great feature stories until the end of the year, when the news is slow and there's more empty space to run them. Here are some great end-of-the-year stories that you, as an ET patient, might want to be aware of from the New York Times:

Denise Grady did an excellent feature report on the fact that, when it comes to clinical trials for cancer in the U.S., patients are overwhelmingly white. Her story focuses on K.T. Jones, who has been looking for treatments for an aggressive form of Hodgkin's lymphoma for the past 15 years. Jones, who is an African-American, has had good results from experimental treatments, but he is not typical. The report underscores that wage disparities among ethnic groups in the U.S. lead to under-insurance for so-called "minorities," and that this makes learning about and participating in clinical trials more difficult.

Peg interferon vs. Hydrea ... again

Pegylated interferon seems to be the hot new treatment for high-risk ET patients. Dr. Rubin Mesa, MPN expert with the Mayo Clinic, offers the results of two studies presented at the American Society of Hematology (ASH) conference held earlier in December that studied the effectiveness of hydroxyurea (Hydrea) and pegylated interferon (Pegasys) in high-risk ET patients.

Those studies, which followed patients for a year, showed:

• Both drugs were equally effective at lowering platelet counts and reducing the risks of clotting and bleeding.
• Peg interferon has more side effects that patients found difficult as the study progressed.
• Peg interferon may better the progression of ET over time, but more study is needed.

If you've spoken to your doctor about peg interferon or are taking it, please weigh in here or on our FB page (link at right). Watch the video below:

Be well!

Related: Two clinicians talk about hydroxyurea vs. pegylated interferon

Related: Inteferon, another ET chemo

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Two clinicians talk about hydroxyurea vs. pegylated interferon

Yup, age matters. In fact it's the most important factor that two
Italian hematologists consider when they prescribe treatment
for ET patients.

Drs. Elisa Rumi and Mario Cazzola, two Italian hematologists, discussed how they treat ET patients in this fall's issue of Blood Journal.

While the docs are clearly up on all the latest info, and they "slice and dice" patients by mutation, risk, age, familial factors, etc. ... they pretty much come up with just three three different first-line treatments: Baby aspirin only, aspirin + hydroxyurea (Hydrea), or aspirin + pegylated interferon (Pegasys). Age seems to be the determining factor in who gets what.

I've joined the CALR-positive club

My CALR test bruise is a beaut! I learned that an ice pack will
take down swelling and relieve discoloration quicker. Also that
it's really hard to take a photo of your own arm with a tablet.

Last week I went to a specialty lab to get tested for CALR. The specialty lab was like something out of a David Lynch movie and resulted in the worst case of swelling and bruising I have ever had from a blood test. The upside is that it put me in touch with my inner fifth grader, allowing me to show my prodigious bruising to all my friends to astound and gross them out. (Tip: If this happens to you, icing the swelling will reduce it quicker.)

Anyhow, today, the results are in, and I am now officially in the CALR group of patients with ET, specifically CALR exon 9, which I realize, sounds like something Scotty would need to add to the dilithium cyrstals in order to move the U.S.S. Enterprise into warp speed.

There was also a whole lot of blah blah about the test on the results I got that I will ask my GP to translate when I see her for my regular check-up in a few weeks. Since my treatment (a baby aspirin every day) is not likely to change, I'm not going to try to get past the army of schedulers to see Dr. Blood about this before next year's appointment.

Anyhoo, now I'm busy relearning all the info I amassed in the past year about CALR-related ET. IMPORTANT CAVEAT: The CALR mutation and its link to ET has only been known for a few years. So saying anything definitive about it is impossible. However, short-term studies show the following: