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:

IPSET helps figure your thrombosis risk

I'm over 60, so how come I'm not on Hydrea (hydroxyurea)? Other patients my age with lower platelet counts are on chemo, while I'm still taking an aspirin.

All I understood from Dr. Blood at our last chit chat was that she considered me "stable" (that is my blood counts were staying in the mid 600s to mid 700s), and that age 60 wasn't a magic number that indicated a need for chemo, even though everyone over 60, regardless of health status, is walking around with a statistically higher risk of blood clots.

My self-improvement kick #6: Physical therapy, massage, and flu shots

I try to keep myself in shape and take care of myself, but it is increasingly difficult what with age and ET and Life in General getting in the way. Here's my latest saga:

I wrote about going to physical therapy earlier this year, and it helped a lot. None of the exercises were terribly strenuous. Nothing hurt a lot. Most involved stretches. But do allow me this brief rant: 

I ended up having to pay about $400 for this treatment. It was worth it, and I will pay it, but I could have gotten out of this a lot cheaper if I had just asked for a prescription for a pain killer. And therein lies a big problem with American health care. Physical therapy is a "high touch" proposition. You need an actual person to assess your problem, show you what to do, make sure you're doing it properly, prescribe your exercise regimen, and follow up to see if it's working. It doesn't work all at once. I did not dance out of the office Day One and throw my cane in a gutter. But six weeks later, I am sleeping at night. And I am saved having to take a bunch of medication. I am not walking like Chester on Gunsmoke. Why don't insurance companies cover this treatment better if they truly want people off the oxy and other pain meds? 

Anyhow,  I should be good as long as I do the exercises. Which leads me to ...

The debate: should some ET cases be reclassified as preMF?

Dr. Heinz Gisslinger and some other MPN specialists are looking at whether we should add a new sub group of MPNs: preMF. This is important because it affects those of us with ET.

Dr. Gisslinger explains it here (his German accent may be a little difficult at first). I have a summary after the break.

ET complicates everything

It's me! I'm running the yarn swap table at the Michigan Fiber
Festival. I look pretty good for somebody with cancer who's
running on about three hours of sleep, don't I? Despite
challenges, it was a great time, but ET makes this complicated.

I have REALLY neglected this blog due to a hectic schedule and the fact that ET complicates everything. As an ET patient you have to learn to prioritize and sometimes ditch what's not necessary. I need to prioritize my blog here. Meantime, here are some observations from my summer activities.

As you may recall from previous blog entries, I went to physical therapy this summer for sciatica. The PT really helped--no more sciatica!--and I can sleep through the night now. That's really important because when a common problem like sciatica messes with your sleep it can make you feel run down really fast. That's because you're already fighting fatigue (the Number One complaint of ET patients) from the cancer (and chemo for some of us), and the lack of sleep makes you extra fatigued. Lack of sleep also worsens the brain fog. And lack of sleep for long periods can also be hard on your general wellness. ET complicates everything!

MPN Landmark survey results are in!

Over on our Facebook page awhile back I posted a link to the MPN Foundation's Landmark survey. Many readers of the blog and FB page took that survey, and the results are in.

Please join us on our FB page to discuss. Meantime, some of the interesting tidbits I found:

• More than half (56 percent) of us say our disease affects our quality of life. Not surprisingly, fatigue and headaches are our most reported symptoms.

• There are differences in treatment goals between doctors and patients. For example, 21 percent of us want the progress of our disease to slow. Only 4 percent of doctors set that as a top goal.

• Most doctors (94 percent) said they understand how our disease affects our lives. But fewer of us (74 percent)say that the doctors actually do get it.

• About 56 percent of us have changed our doctors, mostly because we weren't satisfied with our initial care. But once we found the right doctor, we are happy with him or her.

Here's Dr. Ruben Mesa, who took the lead on this study, talking about the findings.

Be well!

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