High Platelets

I have gotten my platelets down to 388,000 but it has take a long time and it has been all over the chart. When I was first diagnosed, they were 1,250,000 I was first prescribed 2,500 mg of HYDREA daily and gradually the dosis was lowered. We have found a pretty stable dosage of 1,000 mg daily x 7 plus one week I add 1,000 (2 500 mg tabs) and the next I add 1,500 mg. My oncologist feels that if I can keep my platelets below 500,000 I am doing well. Of course, I prefer them closer to 400,000. But I also have to watch my red blood cells and white blood cells which are a little on the low side right now.
I take an 81 mg aspirin every evening. I looked at ANAGRALIDE. My first doctor had mentioned it as a possibility if the Hydrea needed something more. but so far I have had success with the Hydrea plus the baby aspirin.
I read this interesting article recently about ANAGRALIDE on PUBMED.GOV website:

Hydroxyurea compared with anagrelide in high-risk essential thrombocythemia
Abstract
Background: We conducted a randomized comparison of hydroxyurea with anagrelide in the treatment of essential thrombocythemia.

Methods: A total of 809 patients with essential thrombocythemia who were at high risk for vascular events received low-dose aspirin plus either anagrelide or hydroxyurea. The composite primary end point was the actuarial risk of arterial thrombosis (myocardial infarction, unstable angina, cerebrovascular accident, transient ischemic attack, or peripheral arterial thrombosis), venous thrombosis (deep-vein thrombosis, splanchnic-vein thrombosis, or pulmonary embolism), serious hemorrhage, or death from thrombotic or hemorrhagic causes.

Results: After a median follow-up of 39 months, patients in the anagrelide group were significantly more likely than those in the hydroxyurea group to have reached the primary end point (odds ratio, 1.57; 95 percent confidence interval, 1.04 to 2.37; P=0.03). As compared with hydroxyurea plus aspirin, anagrelide plus aspirin was associated with increased rates of arterial thrombosis (P=0.004), serious hemorrhage (P=0.008), and transformation to myelofibrosis (P=0.01) but with a decreased rate of venous thromboembolism (P=0.006). Patients receiving anagrelide were more likely to withdraw from their assigned treatment (P<0.001). Equivalent long-term control of the platelet count was achieved in both groups.

Conclusions: Hydroxyurea plus low-dose aspirin is superior to anagrelide plus low-dose aspirin for patients with essential thrombocythemia at high risk for vascular events.
Hydroxyurea plus low-dose aspirin is superior to anagrelide plus low-dose aspirin for patients with essential thrombocythemia at high risk for vascular events.

I guess if I have a future problem with Hydroxyurea, the doctor would put me on ANAGRALIDE. Would very much like to keep in touch in this regard. I don't think you mentioned your age. Or I didn't see it. I am 72. Was 65 when first diagnosed.

My Dr discussed Hydro and Peg, but when I asked what she would do in my case, she said Peg because while Hydro absolutely brings down platelet levels, Peg has the additional benefit in some patients to prevent the ET from going into the more dangerous fibrotic mode of the disease. Of course no guarantees and many folks are on Hydro for life with no new progression. I did see that word mentioned a few times in my bone marrow biopsy (which my Dr said I do not have at this point) so maybe the fact that my platelet levels were rising so fast made me a better candidate for a more aggressive treatment. My levels went from 600 to 950 in four months. So after my first month on weekly Peg injections, I came down to 900...I'm taking that as a win as it stopped the creek from rising. We'll see next month!

Hi Mortysdad…

I am very interested in your progress with Pegasys for ET JAK2. I was started on 500 mg HU daily but started with daily headaches. I was taken off it for a few weeks and restarted on 500 mg HU every other week. Well, headaches have started going from mild to now every day and sometimes a migraine. When I see my hematologist I think Pegasys might be in my future.

Did you start weekly, dosage, progression?

Thank you, Eileen

Hi Mortysdad…

I am very interested in your progress with Pegasys for ET JAK2. I was started on 500 mg HU daily but started with daily headaches. I was taken off it for a few weeks and restarted on 500 mg HU every other week. Well, headaches have started going from mild to now every day and sometimes a migraine. When I see my hematologist I think Pegasys might be in my future.

Did you start weekly, dosage, progression?

Thank you, Eileen

Hi Eileen, I have been on Pegasus for 7 weeks, at a dosage of 45 mcg weekly. Last week I had my blood drawn and my platelets came down from 588 to 320, into the normal range. Unfortunately my white blood cells are now a little less than normal. I am going to continue this dosage for another month and have another blood draw. I have really not experienced any side effects from the drug up to this point. I have had ET for 30 years, but only recently found out I had JAK2, so I accepted that I needed to do something. Best of luck to you.

I have a part D, Aetna Silver Scripts plan. My doctor submitted the request and the approval came within a day or so. My co-pay is $1100 for 4 vials. My doctor instructed me to use each vial for 4 doses so that’s what I have been doing with no problems.

I use a new needle and syringe each time. I just take 45 mcg out of the vial which is 180 mcg. Then return the vial to my refrigerator. It was stressful in the beginning because I had never injected anything before. But I quickly got used to it. I watched a couple YouTube videos and when I next went to the doctor had the nurse practitioner watch me to make sure I was doing it correctly.