Patient Power resources

Patient Power is an online site that offers info to patients with all types of cancer, and I'm adding it to our resources list.  The site puts viewers in touch with info and interviews with lots of specialists at research hospitals. You have to sign up to gain admission (no fee), and you can get updates about MPNs in your email. The site also tracks news from oncology conferences. Patient Power is funded by Incyte, the manufacturer of Jakafi. I always proceed with caution with organizations and sites that are funded by Big Pharma. Nevertheless, the information is credible and scientifically sound. So you may want to sign up, but understand who's driving the boat.

Patient Power also has a YouTube channel. You'll need to use your browser's search function to find those that pertain to MPN's. Use the search term "mpn." Here's a video from July in which Dr. Naveen Pammaraju, Anderson Cancer Center, answers the eternal ET patient question: Why are we so damn tired?

And here's Dr. Srdan Verstovsek, Anderson Cancer Center, explaining why we have night sweats and why I feel so damn good on prednisone, which I have taken for bronchial infections.

Here are some tidbits from this summer and early fall that I found interesting on Patient Power, in no particular order:

Immunotherapy update: Everybody at ESMO (European Society of Medical Oncology) in September was all geeked up about immunotherapy (getting your body to fight off cancer on its own) and "precision medicine," which is treatment tailored to specific patients. While these therapies show some promise, they are still in the experimental stage, Patient Power reports. It's my view that doctors have been fighting cancer for a long time, and a key element that is NOT discussed at conferences like these are environmental factors that might trigger cancer development. How about trying to reduce the causes of cancer as well as to cure it once it occurs? Nevertheless, some immunotherapy drugs to watch include nivolumab and SO-401.

Avoid carcinogens: Speaking of what causes cancer, Dr. Josep Tabernero, Barcelona, urged doctors at ESMO to "emphasize lifestyle changes that would reduce the incidence of cancer: quit smoking, reduce alcohol intake, eat a balanced diet low in red meat, exercise and avoid exposure to substances that have been shown to be carcinogenic." Good advice. But avoiding carcinogens isn't always easy. Not everyone can simply afford to pack up and move away from polluted air and water. And those who work outdoors for long hours in the sun may need those jobs to support their families. Do their employers provide sunblock and information about how often they need to apply it? No, I didn't think so.

JAK inhibitors and Interferon. In June, MPN expert Dr. Verstovsek, from the night sweats video,  discussed early research results for momelotinib, which works like Jakafi (ruxolitinib) to reduce the ability of our genetic mutations to mess up our blood. Speaking at the American Society of Clinical Oncology conference, Verstovsek said that results were mixed for momelotinib in MF patients, so more study may be needed. That drug has not been tested in ET patients. Pacritinib, the subject of some earlier studies which had been halted due to problems, may be tested again in MF patients to see if different dosing might yield better results. NS-018 is another drug coming into view to inhibit the effects of our mutations. Interferon injected every other week seems close to being approved for those with ET and PV. Verstovsek, like many experts, held out the hope of possible remission with interferon therapies. Right now, that rate is about 20 percent, mostly in ET patients with JAK2, lower in those with CALR.

Be well!

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