Hi everyone, I'm struggling with a new ET diagnosis and am finding this website extremely helpful. I'm 34 y/o and just received the formal diagnosis today although I have been doing testing for a few weeks now. My platelets were at 775 and a week later at 800. I have the CALR mutation but not the others. All other blood tests are normal although it was not recommended that I do a bone marrow test. I was told that treatment would have to start when the platelets climbed to 1000. Is there any guidance anyone can provide about how soon that will happen? I know everyone is different (which is what the doctor said), but I'm anxious about whether I should be expecting weeks, months, or years, or if it truly varies. The doctor kept saying that his timelines and expectations are thrown off for me because of my age and that he didn't want to compare me to people in their sixties or seventies. Based on what I read and my prior appointment with him I expected to be asked to come back in six months or so, but he wanted to see me again within a few weeks and that was a little surprising to me. Any guidance would be much appreciated. Thank you!
How quickly do platelets climb in ET?: Hi everyone... - MPN Voice
How quickly do platelets climb in ET?
Hi, sorry to have to welcome you to this club. Platelets will vary week to week, but it would be wrong to calculate a linear increase or decrease as it doesn't really work like that. I did the same when I was diagnosed with MPL ET. My platelets went up from 750 to 880 in a week so I thought crips by the end of the year my platelets level would be through the roof. The reality is that they just go up and down. Write a list of questions you wish to ask your haematologist on the next visit. You are quite young so I assume they dont think you pose a cardiovascular risk, so maybe you dont need medication. If you were a heavy smoker, heavy drinker and obese they may consider Cytoreductive meds like Hydroxycarbamide and low dose aspirin. Each person would be assessed on their own criteria regarding medication, so talk to your haematologist on your next visit. Good luck. Raff
Thank you!!
Hi welcome to this forum, you’ll find it really helpful, as being diagnosed if like me was such a shock. I was diagnosed last March after my platelets shot up from 300 to over 1000 in a few weeks. But everyone is different and you are younger, so I wouldn’t worry too much, your doctor will just want to check you with being newly diagnosed. Just ask lots of questions, and if your doctor can’t answer, look and ask on here. Jackie
Thank you, Jackie!
I know where you’re coming from! The Prof (I’m at Guy’s in London) was happy to wait until platelets rose to 1500 / I reached 60 before ‘starting a conversation’ about commencing drug intervention. This seems to be the standard approach. But that does depend on whether you have any other health issues or experience of thrombotic events. As it was it took about five years before my platelets hit 1700 and at that point it was a no brainer to start Hydroxy. In the meantime my HCT had climbed and a second BMB confirmed PV (which is probably what I had all along). So don’t panic. My platelets hovered around 1000 to 1200 for a long time. I managed on aspirin alone. It may be worth getting an opinion from someone who has plenty of experience of managing younger patients with MPNs. Good luck!
Thank you!
Welcome to the forum, you will find it a great place for support, suggestions and understanding. In my personal experience, having ET Jak2+, my platelets gradually increased over time, with readings going up and down at each check up. My platelet levels seemed to increase and then stabilise for a year or two before gradually increasing again. In the two years leading upon to my 60th birthday I had two readings over 900 but when I reached age 60 and was started on hydroxy the reading was just over 850. When deciding upon treatment a number of factors are taken into account including any other health issues and age. I managed on aspirin for 13 years so hopefully if you are healthy you will need minimal intervention. Make a note of any questions that you wish to discuss with your Consultant and take them with you to your meeting. Good luck.
Thank you!
Hello. I was 42 when I was diagnosed, so not quite as young as you but still fairly young for such a diagnosis. I agree with the other replies so far. Counts fluctuate quite a bit and that is normal. For the first year after diagnosis I would go to the hospital for blood tests every month, and the reason for that was so that the consultant could build up a picture of how my counts were changing (if at all) over a set period. I actually welcomed it as it allowed me to get a better picture and understanding of what was happening. I wouldn't be alarmed that your Dr has asked to see you again so soon. Once my consultant had 6 months' worth of results it allowed him to then make recommendations. My counts didn't constantly rise but fluctuated. After 6 months we both agreed that a second opinion would be good and I went to Guy's Hospital London. That might be worth you considering once you're a bit further down the line. I had a bone marrow biopsy taken within the 2 months of diagnosis and again I welcomed it (well, perhaps not quite as chirpy about it as it happened, just uncomfortable that's all) as it confirmed the diagnosis and gave the Dr a fuller picture. Your Dr might be waiting till his has more of an idea of your count pattern before he makes a call on that. The key thing seems to be that everyone is very different. My platelet count is on the high-er side, ranging from 1100-1500, yet both my consultant and Guys' hospital agree that no treatment for me is necessary at the stage, other than aspirin. I think remembering that you're unique and what's right for others may not be right for you is a key thing to remember. The whole diagnosis is very stressful, however I do think you'll feel better once your Dr has got a better picture (regular set of results for you) as that will help paint a more informed picture. Happy to keep in touch if that would help. Take care, Caroline.
Thank you, Caroline! The general consensus seems to be that seeking a specialist is important. I'm going to post shortly and see if anyone can recommend a particular specialist in my area (I live in the states so London would be an amazing trip, but quite the distance!).
Ah yes, that would be a rather expensive trip!!! I would recommend you contact Maz who is the Administrator of the site (see the members tab above) as I believe there is a group similar to MPN Voice in the US that would be worth contacting, they'd probably be able to give you some info about specialists in the US.
Hi Caroline, was it your own consultant that suggested going to Guys for a second opinion? I’m only 53 and was put on aspirin and Hydroxycarbamide straight away and my platelets are steady, would love to come off the chemo tablets and just take aspirin for as long as I can. When I went to the forum in Liverpool quite a few older than me ladies had come off it, and just taking aspirin. I see my consultant on Monday for my 3 monthly check so will see what my platelets are this time, last time they were 350. Jackie
Hi Jackie - the conversation actually started as my consultant hadn't had much experience with younger patients and I asked whether a second opinion would be a good idea, my consultant told me that he favours that approach and so it was fairly easy to arrange. Maybe on Monday you could have that conversation? All the best.
Hi Purple, hey just to let you know platelets do go down! I am the same mutation as you. When My platelets were first picked up as elevated they were 770 that was almost 4 years ago. I became very stressed and anxious over some terrible private stuff and they went up to 990! I got rid of the stress and guess what they went down to 601. At present 4 years later 701. I have blood tests every 6months and see Dr yearly. He was going to stretch it to 18monthly. He is not to concerned.
Thank you! That is reassuring. I am going to start paying more attention to stress and healthy eating, etc.
Also only recently got diagnosed with ET with Jak2 mutation. The covid thing has been a royal pain in the arse as the comms between me and the docs has been limited/non existent. Im trying the following. I live alone so don’t eat as well as I should. So I’m now using a meal supplement called Huel of which I have twice a day, then a regular meal in the evening. I’ve up’d my fruit And veg intake along with my daily water intake and I’ve cut down on my caffeine. I’ve come off the oral contraceptive and stopped smoking. I’ve also just started taking Tumeric capsules every day and am looking into Aloe Vera drinks. My counts have been mid 600’s and the last one 777. I’m due a new set of bloods very soon, then again in 3 months when I’m scheduled to see the consultant again. I’m only on 75mg aspirin daily at the moment. And I’ll be interested to see how my lifestyle changes are affected over coming few months. Point to note I haven’t had a silent migraine since the aspirin and my lethargy is massively reduced since using the supplements and stopping smoking.
Good luck.
prayers dear God has your hand hear. Im 63 jac 2 pos 1 year diagonosed and i peaked ariunf 775 and went down and still havent beem that high again waited a lmost a year to treat with hu.
And only started due to other complicatio s im having take your 91 mg enteric coated aspirin drink lots if water 8 -12 glasses per day and give any stress to the lord .
educate but dont let it chamge yiur life tour young and should be fine based on percentage alone
Possible ET? Higher levels of Platelets for years 
ET, platelets and stroke risk
Is this normal for platelets to increase so quickly ?
Sharp rise in platelets
How the Hydroxy treatment goes in time?
