I served in the Army during a more recent war than many of the veterans who have been diagnosed with an MPN. I was diagnosed with Essential Thrombocythemia (ET) in early 2013. My son was only a year old and I had spent two weeks in a VA hospital while hematologists tried to rule out other illnesses. I was put on Hydroxyurea (Hydrea) almost immediately due to the aggressive rise of my platelet count. It was eventually controlled and I was sent off with a permanent Hydrea prescription.
My background in health care and my university education prompted me to research this illness and I learned a lot. I read about alternative drugs, but the drug that stood out to me the most was peginterferon alfa-2a (Pegasys). It’s what was advised for young females of childbearing age, as it isn’t harmful to a fetus. I also learned that Pegasys is the only known drug that gives a glimmer of hope for remission. That’s when I decided I wanted to be on Pegasys. Hydrea was giving me terrible side effects.
I joined several MPN support groups on Facebook. This is probably the best thing I ever did for my condition. The wealth of information in those groups is astounding. I met many people who were very proactive in finding the correct treatments that alleviated some of their symptoms.
I was fortunate to have the wherewithal to find this out on my own. I’m sure there are many veterans who do not or cannot advocate for themselves and are probably too tired, too sick or too confident in the VA to research this for themselves. Or maybe many of them had but had been denied, like I was.
At my visit with my VA oncologist, I mentioned Pegasys and my desire to be on it. I was told that Hydrea is the standard drug for ET and that all other patients are on it. I was adamant to get on Pegasys and was told that only Melanoma patients received it. Luckily, I had a receptive and understanding oncologist who said he’d research it first before giving it to me. After doing his own research, he agreed. I think I was the first ET-VA patient in Central Texas to be put on Pegasys. To this day, I believe I’m still the only one.
I was very lucky. I’m sure this does not happen often with other VA physicians. My other mission was to be seen by an MPN expert. Making all these discoveries on my own really showed me how rare MPNs are and how unaware many VA hematologist/oncologists are about the best current available treatments. This is my life…but not just mine, my son’s too. I owe it to him to improve my health and extend my life.
My hematologist/oncologist agreed to submit a request to get seen at MD Anderson in Houston. I was placed into the Veteran’s Choice program and repeatedly given appointments with local civilian physician. After letting the program know time and time again, that I wanted to go to MD Anderson, my oncologist told me it had been rejected because the VA doesn’t approve “second opinions.”
I was disappointed but grateful that, at least, I was on Pegasys. About a year later, I decided to prepare to have another baby. My VA gynecologist advised me to let my oncologist know of this. At my appointment, I told my oncologist my plans and he said he’d put in another request for the VA to cover a visit to see an MPN expert. I didn’t get my hopes up.
Sometime after, I got a call saying I was approved for two visits at MD Anderson. I saw an MPN expert who basically told me I was on the right medication (Pegasys) but that I was taking it too often because my white blood cell count was low and I was very fatigued (among other disturbing symptoms). He decreased the frequency and I felt much better with my white blood cell count being within normal range for the first time in three years. MD Anderson also tested me for mutations that the VA couldn’t perform. I had many questions answered and was finally at peace with how my condition was being handled. I was ready to move forward confidently, I felt closure.
None of this would have happened if I had been a man. The VA only approved my MD Anderson visit after learning about my intention to get pregnant. As a female, I’m a minority at the VA. There are many male vets who aren’t benefiting from a visit with an MPN expert.
If I hadn’t done my own research on ET, I would still be on Hydrea today. The side effects were very trying. Pegasys wasn’t even on their radar. Even if the VA approves prescriptions for Pegasys, Anagrelide, Jakafi or something else, the patients could be suffering from dosage/frequency problems, like I was. An MPN expert can help sort this out, and so much more.
I encourage MPN patients and their oncologists to do their own research. Veterans have the right to know about alternate treatments. Veterans also need to see knowledgeable experts and have access to blood tests that are relevant to their condition.