Hi, I’m new here, I was diagnosed with ET 6 weeks ago.

[ScrabbleM]

My platelet count was 540 and after 6 weeks of 500mg daily of Hydroxyurea my count is now 304. I won’t be seeing the doctor for another 7 weeks and I’m concerned that if my count continues to drop at that rate, it will be way too low by then! I have a call into the doctors but I’d appreciate any thoughts from the group. Thanks!

[Whitehair51]

You might be leveling out now, but you should probably ask for another blood count in 3 or 4 weeks.

[ScrabbleM in reply to Whitehair51]

Yes, that’s what I’m thinking too.

[hunter5582]

Greetings and welcome to the forum. Glad you found your way here.

Standard protocol for initiation of hydroxyurea is CBC every 2 weeks until your levels stabilize. This is precisely what my doc did when initiating HU. "Hydroxyurea is an antineoplastic (anti-cancer) agent used to treat ... Start: 15 mg/kg/day as single dose; monitor patient's blood count every two weeks ..."

rxlist.com/consumer_hydroxy...

Here is a bit more information about hydroxyurea.

drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

You have passed the treatment goal used by some MPN experts. Do please note that there is not complete agreement on this. What really matters is actual symptoms, not numbers on a lab. "A target platelet count of ≤ 600,000/mcL is often used for patients treated with cytoreductive therapy. (J Clin Oncol 8:556-62, 1990: NEJM 332:1132-1135, 1995)"

silvermpncenter.weill.corne...

Here are a couple of useful resource regrading ET.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

That was a somewhat long way of saying you are asking a very reasonable question. We each respond differently to each of the treatment options we have. We each have different treatment needs based on our unique presentation of the MPN. Since your doc initiated cytoreduction, it would seem you are in a high-risk group either due to age>60 or another known risk indicator. If you do indeed need cytoreduction, then close monitoring as you initiate treatment is very important to see how you respond. It is also important to consult with a MPN Specialist, MPNs are rare disorders and most hematologists do not have the KSAs to provide optimal treatment. Here are two lists of MPN specialists.

World-wide mpnforum.com/list-hem./

USA pvreporter.com/mpn-speciali...

Hope you get answers soon.

[ScrabbleM in reply to hunter5582]

Thank you for the welcome! Yes, I am high risk, age and JAK2.

I appreciate all the information you shared with me. I have some reading to do!

Thanks 😊

[TZJ1]

How wonderful you’ve responded so well. 150-450 is considered normal.I’m so pleased for you that you’ve got them down with minimal treatment. Model patient 👍😀

[ScrabbleM in reply to TZJ1]

Lol, thank you for your kind words 😊

[Townie]

Yes it’s very worrying when they leave it so long between visits. I’ve had ET now for 29 years (1992) and my blood count goes up and down. I have just dropped to 1000mg after having 1500mg for ages and I hope that my blood count has stayed stable when I go for my blood count this week.

[ScrabbleM in reply to Townie]

I hope your count stays stable too. Wishing you the best.

[Cja1956]

It looks to me that the Hydroxyurea is working for you. It took me a year and a half for my platelets to return to normal on HU. Stupidly, I took myself off of it at that time, and ended up in the hospital for 3 days with a blood clot in my spleen. Even though I went back on medication, my platelets have never gone back to normal, and that was 11 years ago. I now take 1000 mg per day and I also take a drug called Fedratinib for MF, plus baby aspirin. My platelets hover now in the 700’s to 800’s. I don’t know how to advise you on how often you should see your doctor, but I saw mine every couple of months unless I was having a new symptom, like night sweats or increased fatigue and dizziness.

I hope you continue to improve.

[ScrabbleM in reply to Cja1956]

Wow, I’m sorry to hear what you went through. I hope you continue to do well.

[Mazcd Partner MPNVoice]

hello ScabbleM and welcome to our forum, it can be very daunting when you are first diagnosed, trying to understand everything, I hope that the information on our website is helping you, and also being part of this forum. It is good that you have a call with your doctor before your next appointment so that you can discuss your concerns about your platelet counts. Best wishes, Maz

[ScrabbleM]

Thanks for the welcome 😊 Yes, I appreciate being able to access all the information on this website. Thank you!

[Wyebird]

Hi Welcome to this amazing site. You will get lots of valuable information here. Did they reduce your meds?

It’s daunting to get to grips with this illness. For peace of mind maybe talk to the doctor 3 weeks in and express your concerns and request a blood test.

[ScrabbleM in reply to Wyebird]

Hi, thanks for the welcome 😊I called the doctor Friday and I’m still waiting for a call back. I’m expecting either an ok to get my blood test sooner, like 3 or 4 weeks, or an explanation of why I shouldn’t be concerned. I did expect she would reduce my meds when I got down this low, but I’m not a health professional and don’t understand exactly how this all works! Yes, this is daunting and I doubt I will ever understand it all. Thanks for your response.

[Wyebird]

You will soon be an expert. Are you in the UK?

[ScrabbleM]

Lol, no I don’t think so. No I’m in the US.

[Wilma66]

Have you counts retested. The Dr. may need to adjust meds. God bless ☺

[ScrabbleM in reply to Wilma66]

Thanks for your reply. That’s what I’m hoping the doctor will do. I’m still waiting to hear back!

[Wilma66 in reply to ScrabbleM]

Good deal ☺