What Platelet count is your doctor recommending?

[FloydWood]

I have been recently diagnosed with Jak 2 ET. At the time of diagnosis my platelets were 575. Was put on hydroxyurea 500 mg once a day but has been increased to 9 per week. First blood test after showed platelets at 438. Two tests since then showed platelets at 518 and 509. Doctor said he was trying to keep platelet count below 600. I was surprised that a count this high was considered OK when medicating. What has your doctor said about optimal reading?

[shiftzz]

The NHS suggests the following Platelet Count Adult 140 - 400 x109/L

At my worst I was over 1100.

Good luck

[GK40]

Hi.Am also on HU (have awful side effects from it) have ET triple negative. Take 2 HU per day and dr also said 600 as platelet count......I'm above that at present though so hoping to go back on anagrelide soon

[Solyesh]

Floyd - interesting question. My MPN specialist has always stated that there is no "magical number" but being in range would be ultimate target - in his view it really depends on the patient and the symptom burden (if any) and overall risk factors. My platelets have been high for about 7 years (at least we know of) and have ranged from 600 - 1,400 during that time.

Given my low risk category (<60 years old and no thrombotic events) he was fine on just aspirin and monitoring..until the platelets shot up to 1,400 and I had bleeding at the gums - that's when we moved to cytoreductive therapy. He said in general 1,500 tends to be a "magic line" to start medication (even without symptoms) but once on medication he would like the platelets to be within normal range if at all possible but it really depends on medication tolerance and overall symptom burdens (i.e. he would be fine with my platelets, everything else being equal, below 600 if it meant that I could be on a lower dose of medication and I had no other issues (quality of life was excellent).

He also always reminds me that individual readings can vary by about 100, recently (2 months ago) switched to Pegasys and am weaning off HU - last reading was first time in 7 years platelets were within range (at 429) but I am still on a fairly high dose of Peg (90 mg/week and was still taking 1,000mg/day of HU at that read) so we'll see the next read. He has said if we can get me completely off the HU and perhaps reduce the Peg to 67 or 45/week then he would be fine with platelets under 600.

HTH

[Davesutts]

Hi, my platelet count has been in the high 400’s so Doc put me on HU one 500mg a day 5 days a week. He wants my number below 400. No major side effects just terrible leg pains which I’ve had for ages. Good luck

[Anniepops112]

I think it depends on our individual circumstances. My platelets are around 800-900 and I’m on 75mg aspirin. I’ve been told as long as under 1,000 no action required. I’m in my 30s, otherwise fit and healthy

[Joetcalr]

Mine are around 600, which is good imo, but haemo keeps telling me that 400 is the target, but as I was 1600 + when diagnosed, I don't get the logic. Such a medication heavy lifting to get lower

[K-itty in reply to Joetcalr]

Mine are currently at 1200 and my oncologist has stated he wasn't going to be concerned until my platelets are around 1500-2000. A few months ago they were 752...go figure? They seem to fluctuate. I resisted going on hydroxyurea since I was diagnosed with ET in 2016 , then PV a few years later. I recently started on a very low dose of hydroxyurea and will see how it goes at the next Blood draw.

[Bluesloth1]

A question I too often wonder about - when I was started on HU 5 years ago I was told aim was to be under 400 (never achieved) this changed to under 450 (achieved once). Now my target is under 500 and my last two counts were 497 and 480. This is now considered ‘stable’. From reading the comments we all have different experiences. Good luck with it all.

[shiftzz]

royalwolverhampton.nhs.uk/s...

[SueYoung]

I'm 61 and triple negative ET, my counts hover around 600 plus or minus 50. My haematologist only has me on aspirin, I am symptomless apart from night sweats and hot 😳 but that could be my age of course 😁. He will only put me on HU if I'm consistently above 600.Hope you get the right treatment that suits you. Xx

[ainslie]

HiMost experts will not treat platelets under 1000 or more unless symptomatic, lesser haems like to dish out meds when not necessary for platelets, it’s also common for platelets to jump up and down even by 200.

[K-itty in reply to ainslie]

I agree...when I was first diagnosed with ET/PV in 2016, my platelets were low 600 and my hemotologist wanted to immediately start me on hydroxyurea and do a bone marrow test. I think it's just standard protocol... I've been very reluctant to start on hydroxyurea until just recently and I'm taking a very low dosage. At my next blood draw, we'll see if that's working for me?

[FloydWood]

Many thanks to each of you for replying. I was so pleased that the count came down so much on the first test. And so disappointed when it went back up. I was hoping to reduce meds instead of increasing. I am only about 6-7 weeks into this adventure so am still getting my bearings.My anxiety level has been difficult to handle. Well it has been pretty high with all the Covid news the last 18 months and this diagnosis sent it through the roof. I am so thankful I found this site and have spent hours reading here. It has brought me some comfort.

[Cja1956]

It really depends on the person. My platelets have been in the 600-800 range for a few years. My hematologist tells me some people feel fine in that range, but others, like me, feel brain fog and fatigue. She would like to see me in the 500 range, where I seem to do better. But even on medication, we can’t seem to get my platelets down. I have post Et Mf, so I take hydroxyurea, Fedratinib, and baby aspirin. It’s a balancing act because my red blood cell counts are all low. Hope that helps.

All the best

[Gordonek]

Target is 300 and is pretty stable at just under.. on 1000mg of Hu

[shiftzz]

My numbers with NHS Upper and Lower limits in red

Platelets

[hunter5582]

There is no specific number to shoot for when engaged in cytoreduction. When a number is used, 600 is a well recognized target. silvermpncenter.weill.corne...

The thing to understand is that there is no particular value to trying to get the platelets down to a "normal" level <450K. There is no correlation between the number of platelets and your risk of thrombosis at the levels you are experiencing. It is about how the platelets behave, not how many of them that there are.

ET comes with three risks: thrombosis, hemorrhage, and microvascular symptoms. It is hemorrhage that significantly increases as platelet levels rise. It is often the secondary MPN symptoms that are more bothersome (e.g. fatigue). The goal of MPN treatment is to control symptoms and reduce risks. Your risk profile is based on the known risk factors: age>65, prior history of thrombosis, cardiovascular disease, etc. Most people with low-risk ET do not need cytoreduction. The risks of the treatment do not outweigh the risks of the ET.

We are all different in how our MPNs present. Some people tolerate platelets levels around 1 million with no problems. Others have issues at relatively low levels of thombocytosis. We each need an individualized plan of care. Optimal care is best achieved in consultation with a MPN Specialist. Most doctors, even hematologists, do not have the KSAs to provide optimal MPN care. That is why expert consultation is so important.

All the best.

[K-itty in reply to hunter5582]

Well said as usual,Hunter!

[K-itty]

Hey Floyd...my oncologist isn't overly concerned about numbers. I mean he is, but isn't. I've been extremely reluctant for years to subject myself to a toxic, nontheraputic drug like hydroxyurea, but a recent thrombocetic event changed my mind-at least for now. I still try to do it my way, that is, the lowest possible dosage that will work so I don't suffer major side effects. My oncologist works with me and knows that I have to do it that way for me.I don't advocate this for others-you have to do what you feel is right for you.

[Lena70]

It is interesting how much answers vary here. My platelets are always between 600-700. I'm on aspirin and considered low risk.

I'm wondering if I'd feel better if my platelets were lower.

[FAM_KT]

My doctor likes me to sit between 150 and 300 - this is a direct question I asked as my consultant. But I do have clots and everyone’s situation is very different.

When I started treatment I was 600+ it took a while for the count to come down but then it dropped to 104 at one point which they became concerned with so I asked the question what range would you like it to sit between. Hope this helps 🙂