When is it time for a change?

Hi All,

I'm 44, JAK negative with ET and currently only on a low dose aspirin regimen. I saw my hematologist yesterday and my platelets have gone from 959 to 989 in the last couple of months. I see many of you have much lower platelet counts and are taking other medications. My doctor assures me that I'm low risk and that the increase doesn't constitute a change in treatment. I guess I'm wondering if some of you are in a similar situation. I'm grateful to be considered low risk, but if my counts keep rising... I just wonder how high is too high.

Thanks!

Jason

21 Replies

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  • Hi jwc, there have been a few posts about when to start medications other than aspirin. I to am ET calr, aged 50 and been on Hydroxy 1000mg/day for nearly 2 years. To be honest if I could get away with aspirin I definitely would and have tried to stop/cut back on meds but count just climbs to dangerous levels. If your count is fairly consistent and level at around just below 1000 and your Dr thinks this is OK I would be take the aspirin and not worry. If the count goes over 1000 and keeps rising you can worry about it when/if it happens. Good luck 1972jwc, hope that count stays under 1000.

    Cal

  • Thanks, Cal! I appreciate your thoughts.

  • Hi

    My sister has ET and is now 50. She just takes clopidogril (same sort of thing as aspirin), her counts have always been 800-900.

    She was told originally that if her counts went up to consistently over 1000 (in her 40's) then they would conisder hydroxy, they then told her later on this had changed to 1500.

    I beleive now its 1000+ for over 50's so you are fine with them as they are. The high/low risk factor isnt just based on your counts its based on age too. So i do think when you get to 60 they try and put you on hydroxy regardless as your age makes you more high risk.

    Paul

  • Hi Jason - consensus in the UK seems to be that up to 1,500 is OK for aspirin only, so long as you are under 60 and have no other risk factors.

    I was on aspirin only for many years with counts in the 800s and 900s and only started other treatment when I had 3 consecutive counts over 1,000 and was about to hit 60. That seems like an arbitrary age but the view is that age adds to risk of stroke so even if nothing changes immediately on your 60th birthday it seemed sensible to start reducing my risk of thrombosis.

    Hold out as long as you can and make sure you're being advised by haems who have a good understanding of MPNs..!

    Cheers

    Andy

  • Hi. I am in my 40s too, have PV, counts around 850's and am only on aspirin and venesections. My understanding is that as under 60, don't smoke, lead healthy lifestyle, and platelets under 1500, that I am considered low risk.

  • I am in my 40s and like you JAK neg ET - my count goes between 1200 and 1400. i have made the decision not to take medication at this stage - and even recently (after seeing a paper posted on here pure.qub.ac.uk/portal/en/pu... stopped taking Aspirin. Whether or not to take meds for those of us lucky enough to be low risk is a very personal decision based on lots of factors. being med free suits me for now :)

  • Morning :)

    I have PV Jak2+ (54 yo)

    May seem strange to say but I never even think about keeping track of my platelet levels. I presume they're OK as no one ever mentions them... just had a look back and they range between 279 & 362.

    My PV is managed by aspirin and I have venesections approximately every 8 weeks.

    I had a small stroke in 2012 (before diagnosis) and at first I was considered as high risk due to that. My consultant mentioned the possibility of hydroxy when I was initially diagnosed in 2014. But since - thankfully - I'm now considered low risk.

    I don't smoke, lead a healthy lifestyle and my PV symptoms are easily managed with venesection. Long may that continue...

    I know that there is a possibility that things may change at some point, but I'm keeping fingers and toes crossed that it won't be for a long time yet. :)

  • Hi, I'm 54 platelet count is around the 920 mark and I'm also only on aspirin. I was told by the haemo that I'm low risk also. By the way I'm in the UK.

    If you've not had a clother, ,stroke or heart attack then your deemed low risk it seems. That is until you reach 60 then they start you on the chemo drugs.

    To be honest I'm happy to stay on the aspirin as long as possible as I don't relish the thought of the medication and it's side effects. Although I acknowledge that there different for everyone.

    All the best, Ian.

  • Hi Jason, you should be good too go on aspirin for a good few years yet, I would have thought. You are still young!!! I am 64 an still on aspirin only. My platelets are sitting at 647 last check! I have been also told by my specialist that I am low risk. I also have to say, I wondered how high is too high? Lyn

  • Sorry for crashing Jason's thread - but I would just like to ask, is the criteria in New Zealand regarding age 60 for starting treatment different?

    Jason, I think the platelet count is only one factor. Mine was low (500) and I was full sure that I could get away with just aspirin as I was only just 60 and healthy. When I questioned the hematolgist as to my platelets being low, I can't remember her exact words - but it was something along the lines; they don't know exactly why, but when they're in this range they're more prone to clotting than if they were higher. On the day I was trying to take in so much information so don't take this as gospel.

    Maybe Maz could get clarification on this as I wouldn't like to be giving false information.

    Mary

  • Hi Mary, it is 65 here in New Zealand, so I have been told. I have noted it is 60 in the UK an other places around the world. I am supposed to start HU next year! Not that I want too!! But we will see. Since the normal platelet count is still class as normal up to 400 I would thought 500 would be great!! I also would thought the higher you go,meaning; a larger amount of platelets, the more chance of your platelets clotting? I might be wrong? But it sort of seems logical. Others might have info on this? Would be interested to find out for sure. Lyn NZ

  • Well yes, that's what I thought as well.....hence hoping to get away with just aspirin even though I was 60. But she definitely said something along the lines of the adverse behaviour of the platelets at this level compared to higher levels. Would like clarification though as it doesn't seem to make sense.

    Mary

  • Hi,

    So just to clarify you were told you were more at risk because your platelets were around 500 than someone who had say a count of 1500?

    Well hopefully Maz can advise as i would be tempted to say it sounds wrong to me, but hey i dont know im not an expert but i would be asking for more evidence and a second opinion.

    Considering not that long ago the diagnostic factor for ET was platelets over 650 i would have thought there was an argument for holding off for a little while longer.

    Edit: just to add - the clotting risk to my knowledge is caused by the thickness of the blood caused by the extra platlets in the blood stream, the actual 'clotting' ability of platelets in ET patients is diminished because the platelets arent made as well as a non ET sufferer, thats why an ET patient is more at risk from bleeding than a non ET patient.

    Paul

  • Yes Paul, this was on my first visit with the hematologist.

    When I asked what risk level I was and she said high because of my age. I replied 'yes but my platelets are only 500,' thinking that I would get away with just taking aspirin as I'm healthy. Like I said, I cannot quote her exact words as I was trying to absorb everything, but it was definitely something about the 'behaviour' of the platelets even at this level act in a different way to higher levels creating their own significant risk factor. Not saying higher levels are better at all, as I totally understand the treatment is all about getting the platelet levels down. And this is where it gets very confusing for me, trying to understand the whole platelet levels and treatment process. It has left me with more questions than answers.

    Maz, if you read this post I wonder if you could ask Claire Harrison for clarification on what I was told.

    Thanks

    Mary

  • Just to add to the above.......as soon as I posted I remembered that 'she' said at the lower levels of 'abnormal' the platelets were more likely to clump due to stickiness??

    You wonder why I use the word 'complex' frequently when discussing this disorder?

    I'm even beginning to question did I hear the haematologist correctly at this stage.

    Mary x

  • I just cant imagine it to be true, if it was the case why are people under 60 considered a higher risk if they have a higher count?

  • with me personaly. its also age factors and other health issues i have , so i need to start HU next month if yours keep rising then im sure they will treat you ,but.at minute you are at low risk being only 44 im 64

  • Thank you all for chiming in and sharing your thoughts and experiences. It sounds as if I'm in good shape for now. It's so great to have a community to lean on when you have questions!

  • Picking up on Mary's point I too have been told that our platelets are more 'sticky' than normal ones due to ET, so even though mine are now down to 330 with Pegasys I've been told to continue on aspirin. Haem said he might reconsider if I get down to the 200's - I'm going to keep asking as I now wonder about the risk of bleeding due to lower platelets and aspirin..!

  • Hey Jason... :)

    My understanding is that we can all be just a tad different from one another depending upon a number of known vs. unknown factors.

    In Australia, 'High risk' is generally referred to if you have ever smoked, ever had a thrombotic event (TIA or Stroke), and if one is 60 yo or older.

    Generally speaking, MPNs are considered to degenerative disorders and as we age we naturally begin to be more at risk. Hence, if one has always looked after oneself (never smoked) and maintained a healthy diet and life-style... Then one might be considered a lower risk than those to the contrary etc.

    I was diagnosed w/ Post ET (pre-fibrotic) MF on my 57th B'day in May this year. However, I also had a TIA in August 2015.

    Therefore, I was considered at 'High risk' and started immediately on HU and my platelets were originally at 1700. About a month ago, I was started on Interferon and last count I was 981, and my Haem' has started talking about a transfusion...

    Just recently, and after adding between 5-6kg in circa 4mths, my whole lymphatic system has swelled up and I now have small lumps developing under my arms, in my neck and groin...

    I absolutely detest having to take these cytotoxic chemicals... and if I had the choice of just taking aspirin, I believe that I would be a much happier camper...

    Steve (Sydney)

  • I'm 54 with the same platelet count as you. I too am told I'm low risk and only take aspirin. When I'm 60 this will change and I'll be started on medication as after 60 you're classed as high risk. That's here in the UK.

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