High Platelets

Hi Eileen,
So i have been in Pegasys for 3 months now. I inject once a week and use only 1/4th of a 180m vial which is standard size. This is a starter dose and my hemo may raise. I have my 3rd blood draw tomorrow. I started at 950 platelet count and went to 900 then 869. My only side effects are less sounds sleep, but I have more energy and less itching. So, so far, pleased with the drug overall. It is very $ as it is a tier 5 immunotherapy drug. I like that over a chemo drug like Hydroxy. One builds, one tears down, or at least that's what it sounds like to me. Hope your decision gives you a better pathway to healing. I'll post my numbers as this will be 3 months of data...be well!

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

That’s all interesting. I appreciate hearing other stories. With my ET/CALR I have the interesting issue of Acquired Von Willebrand Disease. It’s a failure to clot issue which is so counterintuitive. I’m not at a high risk for thrombosis but a very high risk for bleeding out now. Two rare chronic conditions. The use of anagralide is in hopes of controlling aVWD where the HU has not helped it. I’m 53 and 110 lbs and in pretty good physical condition. Like I mentioned just fighting fatigue and headaches. Stay tuned… 🙂

Yes, and Yes I am doing the 500 mg twice daily (one in AM one in PM) and two days a week I take an extra 500 mg. with the following week, three extra 500 mg. This exact dosage has gotten me in a safer place with my platelets. I also take 81 mg aspirin each PM. as well as other heart medications.
I am somewhat familiar with ALPHA INTERFERON, not for this disease, but back in 1991 they were using it to treat HEPATITIS C (which my first husband acquired during blood transfusions/cancer treaments back when they did not know about it or screen for it). I gave my husband ALPHA INTERFERON injections 30 years ago. They did not have much of a beneficial effect on him for this condition, and as they yet had no cure for the HEP C in those years, he passed away about 3 years after diagnosis. But it would be interesting to see how effective it has been in the treatment of Essential Thrombocythemia.

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.

ET/CALR and aVWD. My platelets were nearly 2900. I now take 1500mg of HU 4 days a week, 1000 mg )n the other days. I also take 1mg of Anagralide daily. Sounds like a lot but it helps keep my platelets down under 1000 and trying to address the aVWD. Long process with weekly blood draw. Main side effects are fatigue and headaches. Have had issues with mouth sores but seem to have subsided.

Hi @esperanzam The other medications used in the treatment of Essential Thrombocythemia are Anagrelide and Alpha interferon. The go-to first tier drug is Hydroxyurea.
If you’re having side effect with the HU, I’ve noticed other members in the forum have talked to their doctors about altered doses such as 3 days on 2 off or reduced dosages with lab monitoring. Have you talked to you hematologist about this option?

From Esperanzam :
what other medications are you refering to that can help slow the progression and side effects of ET?

I was diagnosed with ET in May 2015. A good doctor in Venezuela South America diagnosed me as we lived there as missionaries at the time. I did have a blood clot, though now resolved after a year and a half of blood thinners. So far they have not found anymore. It is or can be serious if we don't take it serious, but, yes, it could be a worse disease. I am followed by oncology and have regular blood work. I have had a few bumps in the road, especially when I have had to have steroid shots or treatments, since the steroids are what they give to the patients who have too few platelets, to increase their platelet production. I needed the steroids for severe back and leg pain, until I had back surgery. Things are much better now. But it does demand you and your doctor pay attention to your blood readings. We have had to adjust the Hydrea or Hydroxyurea several times during the last few years while I was undergoing treatment for my other problems, chronic lung problems, hip replacement and back surgery, and sciatic and osteoarthritis problems. But at 72 I feel I am doing pretty good as long as I keep up with my meds and lab work. I do have what I consider a few side effects, but hard to tell which effects are because of which medicine. Mainly my feet. I have sore, scaly, feet that the skin peels off and gets raw, and sometimes can be very painful if not kept moist and treated. I have been to dermatologist twice and tested negative for fungus. Oncologist/Hematologist came to conclusion it is probably the Hydrea causing hand/foot skin problems which other chemo does to some. I do get heartburn with the Hydrea from day 1 but the doctor prescribed an acid reducer. And I drink lots of water to make sure it gets down and does not cause esophageal burning. I have had several nobe marrow biopsies; the first one, to confirm the JAK 2 and the next because of concerns about my severe leg pains being from possible myelofibrosis, to rule it out. I am going into my eighth year with this. Sometimes I forget I am fighting a disease that , if not treated, could cause life threatening problems, but mostly I deal with it daily as I do my other problems. I am a Christian, so my hope is in God, both in life and in death. He strenghtens me day by day. My first husband was a cancer patient at the age of 26 way back in 1976. He passed away at the age of 45, not from the cancer, but from Hep C, which he got from a blood transfusion during cancer treatments, before they screened for it. So, comparitively speaking, this is not as hard to deal with, although the frequent blood draws are making my veins a little shy and squemish. 🙂 I sometimes worry about more blood clots or strokes, but will have to let God help me deal with that.
I am glad we have support groups like this.

Still no definitive answers. I met with the hematologist yesterday. She is an MPN specialist. She recommends a bone marrow biopsy so that a diagnosis can be made. she suspects ET or Pre-PMF. My WBC were slightly raised as was the LDH again. In addition, my blood pressure was very high (I think due to anxiety) but she sent a noe to my PCP who wants to see me today or tomorrow. What a mess. The biopsy is scheduled for 1/27. I am feeling overwhelmed right now as I really dread a diagnosis of pre-PMF. It does not help that I live alone as I am dwelling way too much on this. I know my situation is much better than many so I will attempt to dwell on the positive and trust in God's plan knowing that He is in charge.