The question of how long I’ve had polycythemia vera (PV) is an interesting one. I guess you could say I’ve had it since 2019, though I’ve only been treated since 2022.

Symptoms and the Stress of Grief

Shortly after all those tests that ended in misdiagnosis, my spouse of 40 years was diagnosed with late-stage, metastatic cancer. I spent the next 18 months providing home care during treatments.

Throughout that time, I was not well but was determined to provide quality home care. I believed my fatigue was from caregiving and anticipatory grief. Once I became a widower, I continued to believe my fatigue and other ailments were due to the stress of grief.

It wasn’t until I became extremely ill and went to the doctor that it became clear something more significant was wrong. I was given blood tests, with the assumption that we were looking for an infection. When the results showed rather extreme levels, I was called back for additional blood tests.

The second set of tests included a JAK2 mutation test. My hematocrit and hemoglobin were extremely high, and I tested positive for JAK2 mutation.

I began taking aspirin immediately and started a formal PV treatment under the care of a hematologist two weeks later.

Starting Treatment for Polycythemia Vera

My initial treatment was phlebotomy and hydroxyurea. Phlebotomies were weekly for several months, and hydroxyurea was started at a basic dose and gradually increased.

During that time, I was advised by friends in a myeloproliferative neoplasm (MPN) support group to go to a major cancer center and find an MPN specialist, which I did. I went to Dana-Farber Cancer Institute in Boston.

I had a number of additional blood tests performed, met with an MPN specialist who was exceedingly helpful, and subsequently had a bone marrow extraction and biopsy. Although the procedure wasn’t pleasant, it gave my doctors a baseline for tracking whether my condition changes over time.

If you haven’t had a bone marrow biopsy, it may be worth asking your hematologist or MPN specialist whether one would be useful in your case.

Finding the Right Specialist

As I was starting treatment and trying to learn about PV, I would ask my hematologist questions. When I asked about what appeared to be an increasing iron deficiency, he told me “not to look at the lab results” and that he “would tell me what I needed to know.”

Two weeks after that, I met with the MPN specialist in Boston, who asked me if my doctor had told me I was extremely iron deficient.

Needless to say, I have a new hematologist.

After my second visit with the new hematologist, we discussed some changes in my care plan. He asked if it was OK if he consulted with my MPN specialist in Boston. It was then that I knew I had found the right doctor.

Worsening Symptoms Require a Change in Treatment

For a while I was getting weekly, and then biweekly, blood tests. When my iron was dropping, iron and iron retention were added to regular tests.

The numbers showed that the standard treatment of hydroxyurea and phlebotomies wasn’t working for me. I was sick and unable to function, and my numbers weren’t coming down.

Some of my fatigue and inability to function could probably be attributed to the lack of iron (and also vitamin B12). My quality of life was getting so bad that I had decided that if they couldn’t do anything more for me, I would take my chances with Mother Nature. My thinking was that it was better to have two or three good years than several bad ones.

Starting Besremi

I have since started using ropeginterferon alfa-2b (Besremi), an interferon that’s self-injected. It’s too early to tell if it’s going to work. Time will tell.

One thing is for sure, however — not being on hydroxyurea has made a huge difference in how I feel and my overall quality of life.

Build a Medical Team You Feel Confident About

One thing I’ve done for myself is to be vigilant in getting the care I need. Vision can be affected by blood cancers and treatments, so annual eye appointments are a good idea.

I spoke with my ophthalmologist about my cancer. He took a number of images of my eyes and examined factors beyond his standard eye exam, so he’d have a baseline in case things begin to change.

Staying on Top of Preventive Care

Because PV and some of its treatments can affect oral health, many resources recommend discussing with your dentist whether you need more frequent care than the usual twice-yearly visits.

I spoke with my hygienist and discovered my dental insurance has a program for people with medical issues. I was asked a few questions about my cancer and treatment, my hygienist completed an application, and I was approved by my insurer for four hygienist appointments annually instead of the usual two.

Assembling a Strong Care Team

My advice is to take care in assembling your team. I now have on my team dental specialists, an ophthalmologist, a physical therapist, a psychologist, a spiritual director, a hematologist, and a hematology MPN specialist. I’m in the process of finding a new primary care provider and plan to eventually add an acupuncturist to my team.

I encourage everyone to establish a strong team. Confidence in the quality of your care and knowing you have access to great resources can be very reassuring when you’re struggling to get out of bed in the morning.

Listen and Then Determine Your Own Path

My advice is to listen to people’s stories and then determine your own path.

I’ve found that none of us seem to be the same. We have similarities in our experiences and have learned things that are important to others dealing with relatively similar health challenges, but our reactions to medications, our doctors’ ideas about what’s best for us, and much more are all quite different. Some of us do well on certain medications while others don’t.

Since we all respond differently and have different symptoms, our treatments will, understandably, also vary. We can’t expect that what worked for someone else with PV will work for us. We can only use their experience as additional information as we forge ahead in developing and managing our own care.