Answers to your ET questions!

I got answers to many questions from all of you who read this blog and our Facebook page at the MPN Advocacy & Education International conference on in Novi, Michigan, on Thursday, so let me get to those first, and then watch the blog for other entries for more info to come.

Your questions:

If you are CALR-positive, will ruloxitinib (Jakafi) work for you? Short answer is yes, from Dr. Kristen Pettit, University of Chicago. Don't ask me to explain the genetics, but tests show that this drug works on ET regardless of mutation type.

Jakafi also seems to improve symptoms for patients instead of just controlling platelets, but it can take some time to work. It can also result in weight gain and/or higher cholesterol levels for some patients. Like some other chemo, it may lose effectiveness over time. And it's expensive.

There are programs to help patients pay for Jakafi through the manufacturer Incyte and GoodDays, a non-profit organization that helps those with rare diseases afford meds. Links are at right.

What work is being done on the root causes of the mutations that cause ET? What should we prevent exposure to? Not a lot of clear answers here. Some attention is being paid to family groups that have MPNs. The suspicion, according to Dr. Anas Al-Jamadi, Michigan State University, is that there is some kind of genetic factor that hasn't been discovered yet.

In my view, there is not enough attention paid to environmental factors. Breast Cancer Action, which started in the San Francisco area, is one group that has focused on pollutants and other environmental factors in the development of cancers. They have been active and have had some success in opposing things like irrigating crops with fracking waste. In addition, Safer Chemicals, Healthy Families also provides alerts to and tracks all types of environmental substances thought to be harmful. I do track these groups' efforts.

What is the future of gene therapy and immunotherapy for ET patients? Stem cell transplants show a lot of promise for some high-risk patients, and were outlined by Dr. Abhinav Deol of Kamanos Cancer Institute. These transplants actually reverse the fibrosis in the bone marrow. But some things to be aware of: The mortality rate after transplant is greater in low and intermediate risk patient, so this procedure is limited mostly to high risk myelofibrosis patients. The transplant process is also pretty grueling and requires a lot of hospitalization and immuno-suppression medication, like any other transplant. While this option probably isn't for most of us ET patients, I'll write more about this in its own post later on.

Any new research on disease progression for ET? This is ongoing as more genetic information is uncovered (remember that the CALR gene was just discovered a couple of years ago). The information presented at the conference seemed to match earlier reports here on the blog that tracked disease progression by mutation.

Does yoga really help? You may recall from an earlier post that Arizona State University and the Mayo Clinic did a study to find out whether yoga could alleviate some of our symptoms. This was a pretty small study of 38 patients, and those who gained benefits from 60 minutes of yoga every week over 12 weeks were mostly overweight patients. (Overweight patients have a BMI of 25 and above--guilty!)

Just personal experience here, but I do a quickie yoga routine twice a day because I have severe scoliosis. This keeps me pretty limber and mostly pain free. I have also added some additional yoga a few times a week to alleviate sciatica, which can be very painful. For me, this works really well, and I don't need to take n-saids like aspirin, that might cause dangerous blood thinning.

As always: Don't be afraid to ask questions here or on the FB page. The MPN Research Foundation Community page is also a really good place to get info and chat with others. Use what you read here to help guide conversations with your doctor.

And do consider attending programs like the one I did. They can be motivating and really helpful. See MPN Advocacy & Education International's page of events.

Be well!

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