Taking chemo? Use a condom

Yes, patients taking any kind of
chemotherapy should use a condom
to protect their partners from getting
a dose of chemo. 

Whether to use a condom if you are taking hydroxyurea (Hydrea) or other chemo came up on an MPN patient support group over the weekend. Most people were not aware that condom use is recommended for chemo patients. I sure wasn't. But two cancer nurses this morning confirmed it: If you are taking any kind of chemo for your ET, use a condom. This will prevent you from transmitting a dose of chemo to your partner.

Here's more info:

Three essential questions to help you determine the best chemo for you

Doctors differ in their approaches to many things, time
travel, Daleks ... and ET.

I've learned from following online patient groups that doctors, and thus their patients, can become pretty wedded to their ideas about the "best" therapy for ET.

This is a long post, so bear with me. At the end of are three simple questions to your hematologist to see if you and your doc are on the same page about your treatment goals.

Until recently ... Doctors treating ET patients were mostly worried about clots--deep vein thrombosis, strokes, clots in the heart and lungs, rare conditions like Budd-Chiari (clots clogging the veins of the liver), and small clots in the hands and feet causing ischemia (loss of blood flow). These are all things doctors remain vigilant about. Aspirin and hydroxyurea (Hydrea) and anagrelide (Agrylin) have worked well to address these problems and have been the treatment of choice for decades.

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: