My journey with essential thrombocytosis (ET) began in May 2016. Although I am sure I had it for at least four years prior to to that. I self diagnosed myself after noticing my gums were bleeding when I brushed and flossed. I am a dentist, so how could this be? I have immaculate oral hygiene, floss and brush at least two times a day and get my teeth cleaned every three months. A little voice from one of my lectures in dental school went off in my head; I recalled my professor’s words, “in the absence of gum disease or dental issues, bleeding gums can indicate a blood cancer and you should refer your patient to their doctor immediately.” I didn’t think I would be the one to need the referral. After some research on Dr. Google I put the puzzle pieces together. I had tingling fingers and toes for at least a few years and had actually gone to a neurologist who tested me for carpal tunnel syndrome. Again, being a dentist, that is not unusual to get carpal tunnel. However, after that diagnosis was negative, I just brushed it off. I had also had major hives a couple of years ago all over my legs, I had gone to an immunologist and she said it was allergies and put me on allergy shots. After they didn’t go away, I had gone to a primary who told me my symptoms were stress related, “psychogenic” as he called it and I needed to manage my stress.
Six months before my diagnosis, I had a case of vertigo. Again, I went to my doctor who reassured me it was a viral infection and it would go away in a few days. I never had vertigo again so I believed him. No blood work or additional testing was done.
However, the bleeding gums and my professor’s voice was what made me suspicious. I started researching blood cancers and put all my symptoms together for what pointed toward ET. I took charge of my own health and went to a hematologist and asked him to test me for JAK2 mutation. Sure enough that came back positive and my bone marrow biopsy confirmed it. Platelets were in 900 range and I just didn’t feel like myself. He insisted I start on Anagralide that day and that I was going to stroke any minute.
I wasn’t comfortable with his rush to treatment as I had read a lot on ET prior to my diagnosis, so I knew that Anagralide was definitely not first line of treatment and neither is Hydrea if you are at low risk like me. I am otherwise very healthy, work out religiously, grow my own vegetables and juice fruits and vegetables at least 5 times a week. I am not a smoker and I don’t drink. I have a normal BMI and have no other health conditions. I ran out of that office and went to UCSD in search of a doctor that actually listens.
My new doctor suggested that I start on a low dose Hydrea immediately and I declined. I had research and information on my side-I was under 60, platelets under one million and otherwise very healthy with no other cardiovascular issues or dispositions. So I declined once more and she agreed to monitor me. After 18 months, I had a lot of headaches and could hardly feel my feet and my hands felt horrible, almost numb. Again, I am a dentist, so this scared me and I agreed to do treatment but wanted to try Pegasys instead of Hydrea. My doctor was very reluctant about Pegasys because she believed the side effects are not worth the benefits. I produced a lot of studies and literature on how it works better for some people and in my mind I would rather be on Immunotherapy rather than Chemotherapy. I did take Hydrea for one month while awaiting insurance authorization for Pegasys and I knew immediately that I was right in my intuition. It wasn’t the right treatment for me. I was nauseous all the time, couldn’t sleep, had major brain fog, red dots on my chest and legs, my nail beds even hurt.
The answer to my symptoms by a different doctor at UCSD was to take more drugs. One to help me sleep, and an anti-nausea medication. I am very much against taking drugs if I don’t have to so this didn’t sit well with me. Not to mention, they wanted to increase my dose every week since my numbers weren’t coming down the way my doctor wanted them to. For the first time since my diagnosis, I broke into tears because I knew I wouldn’t have a quality of life if I increased my dose of 2000 mg a day. I have a demanding job and need to have a clear brain! When my insurance authorized the Pegasys, my doctor agreed to let me try it and I have been doing great on it at 90 MCG per week and in one month my numbers are down to 920.
I am not suggesting Interferon is for everyone because you all know we are all different and respond differently to different medications. In some studies that compare Pegasys to Hydrea the dosing of Pegasys was so high and toxic that patients dropped out, I would too. But at a low steady dose, it is working for me. Someday, I may have to go back to Hydrea. No one knows how our bodies respond to certain drugs long-term but for me personally, I wanted Pegasys as my first line of treatment. I am 50 years old and 20-30 years of Hydrea ahead of me was not going to be my first choice.
I guess the lesson I have learned and continue to learn is to be your own advocate, research and study your disease. Doctors are busy people with perhaps thousands of patients. I only have one disease and one patient; MYSELF. I will continue to fight for what is right for my body and luckily I have a great doctor that listens to my wants and needs. If I didn’t, I wouldn’t hesitate to switch till I found the right doctor.
Thankful to God for your story, it is so important to be your own advocate when it comes to your body. No one is ever going to care about you the way you care about yourself. Everyone should be in tune to what their body is telling them before things get worse. Oftentimes, people actually think they have become psychotic because it so hard to get other people out of the box. It is my prayer that more doctors will return to patient and actually hear them and respect that they know their own body better than anyone else. I am grafting to have had a wonderful doctor that actually care and take time to read lab work and review past labs and was able to diagnose my Polycythemia after the second follow up and was able to stress the importance of keeping my levels at a certain number and taking aspirin to prevent strokes. Thanks be to The Lord for her for that I am forever grateful.