Hello

[Mike1021]

Hello. Recently diagnosed with ET. Platelets around 700 during routine blood work. Referred to hematologist. Tested JAK2 positive. Put on hydroxyurea, 1000mg per day, and aspirin. Only 3 weeks into this so still wrapping my head around it. I had no symptoms....feels like all this came out of left field. Came across this site, it is encouraging to read comments from many of you living with it and have for many years.

[hunter5582]

Welcome to the forum. Glad that you found your way here. This is a great place to find support and hear information from other people who live with MPNs.

I was diagnosed with ET about 30 years ago. It progressed to PV about 8 years ago. I have lived a rich life and continue to do so at age 66. There can be challenges, but they can be managed.

Not sure why you are on a relatively high dose of HU if you are asymptomatic and your platelet levels are relatively low (unless you have a significant cooccurring medical condition). I would suggest getting a second opinion from a MPN Specialist. Unfortunately, most hematologists do not have the KSAs to provide optimal care for MPNs due to how rare they are. Consultation with a MPN Specialist is very important. Here is a list.

mpnforum.com/list-hem./ - Worldwide

pvreporter.com/mpn-speciali... USA only

The good news is that you will have a lot of time to sort this all out. Here are c ouple of excellent articles on ET that are worth reading.

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

legeforeningen.no/contentas...

All the best to you as you start this journey.

[Mike1021 in reply to hunter5582]

Thank you for the response, suggestions and comments. I thought the dosage seemed high, but what do I know.... Was referred to oncologist so will definitely discuss with him on that visit.

[lakeview65 in reply to Mike1021]

Hi!I went through the process of my ET diagnosis this summer. I feel the same way you do, it came out of left field and it took me awhile to wrap my head around it. I take 1000 mg a day also. My platelets ranged from 630 to 697. I am tolerating it well. After 2 weeks platelets went down to 524 and after another 2 weeks 451. I went to an mpn specialist and he kept me on that dose for now. I believe at my next appointment he will reduce the number of pills per week. I am 65 with no symptoms.

[Mike1021 in reply to lakeview65]

Hi, back! Sounds we are in similar boat. I am tolerating the med so far. Thankful for that and the fact I feel fine otherwise. Never been one to like taking anymore medication than absolutely necessary. Hopefully can find a specialist and feel confident in course of action. Thanks for the reply, take care.

[hunter5582 in reply to Mike1021]

Many hematologists are also oncologists and vice versa. Some just specialize more on one side than the other. The main specialty that matters is expertise in MPNs . Most docs do not have that. If you doc is not on the lists, be sure to ask how many MPNs he/she has treated. The first session is a lot like a job interview. You are the one doing the hiring.

Do be sure to discuss the target/goals for your treatment. Many MPN Specialists focus on actual symptoms and real risks, not arbitrary numbers on a lab. Many now believe there is not value in making the numbers look "normal" as this does not correlate with actual risks. When a number is used for cytoreduction in ET, 600 is now recognized as the target by some of the leading MPN experts.

silvermpncenter.weill.corne...

Hope you find the information helpful. It is a bit overwhelming at first, but as you build you knowledge base you will be able to effectively manage your MPN.

All the best.

[Ratton726]

Welcome to the forum.Like yourself I am asymptomatic-and diagnosed 2 years ago-was put on same drugs as yourself- Platelets over 700 !Now on aspirin and Anagrelide (as had bad reaction to Hydroxy)!It is a shock I was in my early 70's and had just recovered from Colon cancer thought that would be the last of any cancers!

Hope you will continue to feel well.

[Michali45]

Hi Mike, interesting that you are on that dosage. I am in the process of being officially diagnosed with ET. My platelets were 1200 when I fell and broke my wrist 9 weeks ago. They continued to rise and reached over 1500! I have been on 500mg a day of Hydroxycarbamide for a month now and my last blood test showed my platelets at 600, so a vast improvement. I had follicular lymphoma many years ago so not sure there is a link but it is daunting to know this treatment is for life! All the best to you!

[SylvesterMarcus]

Mike, don't panic. Like you I received a diagnosis right out the blue. I thought I was as fit as a 63 year old robber's dog could be. My platelets were over double what yours were and two years later they are within the normal range. Like you, I have had an aversion to taking unnecessary meds so being someone who has to take 1000mg of Hyd and an aspirin everyday doesn't fit with the image I have of myself. Still, it is what it is. Fortunately I'm tolerating it well enough. There are the odd changes I've noticed but provided I can get out on my bike I can forget about them. This is a good forum Mike with contributions from good and helpful people. Good luck mate.

[Cotswoldgranny]

Hi MikeI too have just been diagnosed with ET my platelets are in the 900 range I start my treatment today so not sure what dosage I will be on yet, but was glad you are symptoms free and its working well for you

[Mostew]

Welcome Mike , glad you found this forum, it’s a great help and at times comfort..Like others I wonder why you are on high dose.

I find it useful to write a list of things I want to discuss before appointments.

As Hunter would say. Assertive patients get best treatment( sorry if that’s misquoted!!!! ?

Carolyn

[Minu68]

Welcome Mike:)Not the best club to become a part of, but the best community for support, information and advice, glad you found us.

I was diagnosed last year February, a total shock ! Unlike you, I had symptoms, unexplained for some years until finding out I have ET, and this forum helping me understand what was going on.

My platelets were at 900, and I was started on 500 Hydroxy, slowly titrated up by going to 1000 on 1 day of the week, to 3 days after a few months. Once my platelets were well within range and stayed steady, the dose had lowered to 500 on 5 days, 1000 on the other 2 days of the week. If they stay steady, could be lowered again.

How are you feeling on the Hydroxy? I hope you’re tolerating it ! Take care

[Doggy1903]

Good morning. Yes ET is often symptomless and found by chance. Please feel welcome to ask anything. i was diagnosed about 3 and a half years ago, and likewise was most surprised. Also on Hydroxy and managing well so far.Haematology unit are excellent and check bloods every 4 months. Hope you stay very well.

[blueseas45]

Hi Mike. welcome to the site. I am on 500mg HU a day and it drops my platelet count nicely. Hope they lower your dose soon, seems high.

[mhos61]

Hi Mike and welcome to the forum.

Just to add that the dose of hydrea you’re currently on doesn’t necessarily mean you will stay on that dose.

Your haematologist’s approach maybe to get your platelets down quickly then titrate your dose accordingly. As long as your haematologist is keeping a close eye on all your blood counts in the initial stage of treatment?

[Runner999]

Similar to me - except the Drs let me ease onto H given my reluctance. Still ended up on 1000mg/day though!And yes - there are a lot of us who are asymptomatic - so be open to other "symptoms" which may creep up on you over the years being down to ET or SE ( Something Else)

Good luck!

[Hopetohelp]

Yes it comes out of the blue when you don’t have symptoms. Happened to me too. Everyone’s so lovely on this site and loads of help and info if you have any concerns.

[Cja1956]

Hi, Mike, and welcome to the forum. I too was diagnosed with Et jak 2, but in 2008 at age 52, with platelets around 600,000. My doctor immediately put me on hydroxyurea even though I was low risk for other health problems. But I was trusting and didn’t really question him. I didn’t join this site until 2018 and I found out that at age 60, most people start chemotherapy for this disease. My medications have been adjusted many times over the years, and I’ve been on anagrelide, Jakafi, and Hydrea in various doses. Since 2019, when I finally found an Mpn specialist, I found out I had MF intermediate 1, so currently, I’m on hydroxyurea, Fedratinib, and baby aspirin.

I wish you the best in your Mpn journey.

[otisthedog]

I am on 500 mg per day platelets were at 870. Pegasys for a while than switched to HU. Platelets last count were 415. I am hearing that most specialists say 600 is alright. Hope you get the best care and this can be figured out.

[EPguy in reply to otisthedog]

What was the reason you switched away from PEG? Did your Dr try different dosing?

[otisthedog in reply to EPguy]

My white counts dropped down some to zero. I also had some type of burning reaction. I may ask you to try it again in the future but this is it for now. Platelets at 359 now. I will ask to reduce my dose at next appt.

[EPguy in reply to otisthedog]

That is a strong WBC effect from INF. Some members here are using very small dosages, ~25mcg with good effect, see Ritaandscooter below. If you want to restart you might ask your Dr about that.

You possibly will benefit from Ropeg INF when it is approved. I'm on HU and it keeps blood counts but I don't like it.

[otisthedog in reply to EPguy]

I agree. I don't like HU either.

[EPguy in reply to otisthedog]

I've often referred to the post:

healthunlocked.com/mpnvoice...

because it is big news for us. If you can find a way to tolerate INF it is a good long term investment. HU is fine to stay alive and maybe feel better, but is more like bailing a leaky boat rather than patching the leak.

[otisthedog in reply to EPguy]

I agree.

[Janis12]

Hi Mike, welcome to the club! Like many others on this site diagnosis of ET came as a result of routine health check. Shell shock, me in my early sixties super fit, have been a keen cyclist for over 40 years, kept horses, do the gym, pilates, aqua, walk and bla bla bla. And so it is. I am still doing all of these things after being diagnosed about 18 months ago although sometimes I struggle to motivate myself but being disciplined is key to it all for me. Most days I forget about what I have apart from when I have to swallow the toxic hydroxy and worry about the blood thinner particularly if I end up being decked by a naughty pony I wonder if I will bleed to death. This site is great for sharing experiences and useful information but sometimes it 'puts the wind up me'. Just a point, my arthritis gives me more trouble that the ET.... good luck.

[nightshadow]

Hi Mike, Same story here, ET - JAK2 positive diagnosed from routine blood tests.

I was in the high 700's and was started on 500mg/day and 81mg aspirin/day to start. My platelets started to go down, but at a much lower rate than reported by those starting at 1000 mg/day.

It may take some time for them to finalize your medication level, I was diagnosed January this year, and platelet and RBC levels finally stabilized within acceptable parameters within the last three months.

Diagnosis was bit of a shock and finding this site really helped me wrap my brain around the situation.

Before diagnosis I had a couple of years of fatigue, brain fog and undefined overall pain that I didn't bother to go to a doctor for, thinking that as a woman of 60 I would not be taken seriously. So though not happy to have ET, I am delighted that it is treatable with a fairly safe drug and that I no longer have so many bad days.

Though, living in S. California, the sun protection routine gets a bit tedious.

[Oscarsboy]

Hi. I am on hydroxy and had a full consultation yesterday with Professor Harrison at Guy's who spent time answering all my questions and queries and she was reassuring. However my blood test there showed my platelets at 435 (started at 550) (am ET Jak 2) and I am on 500 mg per day plus two on Saturdays. She actually now wants the medication increased to bring the platelets to below 400 (whereas I said to her I was hoping I could now cut some down) Her reply was NOT YET. As she is the top MPN Specialist here in UK I heed her advice as being the best I can receive and she will now refer her findings back to the Consultant at my local hospital who very kindly put me forward for a consultation with her. There is also talk of increasing the aspirin to try and aleviate some of the symptoms which I am still having. It appears that everyone's body tolerates the raise of platelets at different levels with or without symptoms. We discussed interferon also but due to health issues in my past that have affected my central nervious system (ie polio as a child) it would not be recommended for me, certainly at this point and all the time I am tolerating HU ok. I hope this helps you too.

[ritaandscooter1]

Hi Mike, I agree with Hunter. Why are you on such a high dose of HU and if I might ask.....how old are you? I was diagnosed 16 yrs ago with platelets about the same as yours and just took an aspirin a day and a phlebotomy when HCT was over 45. This was the recommended course of treatment as I was fit, healthy and had no clotting history. I'm now 60 with PV and taking very low dose Pegasys (22.5mcg) despite my MPN specialist saying he would NOT put me on anything but two low dose aspirin a day with a phlebotomy as needed. I read these posts and am a bit alarmed at the amount of drugs people are being put on but then again I understand that we all have different medical backgrounds. The HU dose seems really high for 700 platelets. Mine hover around 800 which I'm happy with as they used to be 1300. Definitely get a second opinion from an MPN specialist. Kerry

[Jody00]

Hi a was diagnosed march 2020 had essential thrombocythaemia since 2014 which I didn't know my platelets been up and down from 596 to 677 but do get quite few issues in my body nothing that I carnt cope with my platelets has slightly raised to 745 I have appointments every 3 months has only on 75mg aspirin at the moment if a do get any symptoms inbeetween time then to let them know but not on anything else only need to be on 75mg aspirin unless anything changes massively with platelets inbeetween time Xx