Im ET jak2 2 +. I went for my 3 month review with the nurse not the hematologist today and my platlets have gone up a bit they were 471 three months ago now 484. The nurse said things are stable all my other bloods are ok so she said just carry on taking aspirin. I questioned the fact that my platlets seem to be be increasing every 3 months but she said not significantly ?? Apparently my count has been up and down since 2015 maybe longer they were 413 when I was diagnosed 2018 and when I first seen the heomotologist they'd gone down to 383. So from July 2018 to may 2019 they've risen by 100- would you say this is a significant increase?
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Camelian
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Hi, not particularly high increase. My husband who is ET/PV had his increase from 720 to 830 in his 3 months before they started venesections (before he changed from ET to ET/PV) He now hovers around 700-850 so the venesections are keeping his platelets steady as well as his HCT. An increase is scary but UK doctors unless you are high risk don't tend to do much until platelets are 1000-1500 range. Hope you feeling OK, this would be when they would consider maybe medicating at a lower level although with hubby even though he's very symptomatic because he's low risk due to age & cholesterol levels etc... they won't medicate yet. Take care x
Hello Camelian. I've had ET for 10 years and started with counts just under 3,000! With medication my platelets are around 650 - 750 and do fluctuate.
My medical team agreed that to get the counts to 'normal' would be difficult as the amount of medication to do that would cause too many unacceptable side effects. I take interferon Alpha. Everyone is different and different things will lead to changes in the counts, but the main thing is to trust the medical team who deal with this all the time, as well as listening to your body and knowing how to manage the other potential threats to your health that could lead to bleeding or a stroke - e.g monitoring cholesterol, not smoking etc.
Do read other people's stories on this site and ask questions of your consultant.
I still cannot get over the fact that a person can be diagnosed with a 'cancer' and be advised to take aspirin. Comments regarding this came from a Professor on the Mayo Clinic site recently. Can't find the link myself but it shouldn't be too difficult to find.
It's not too significant. I used to work in the veterinary field and I dealt with bloodwork all the time. Patients platelet levels can vary quite a bit from day to day.
That is an insignificant degree of change. Your platelet levels can routinely fluctuate by as much as 100,00 for a variety of reasons - sometimes just your body's natural response to stressors. More recent research shows that there is no positive correlation between thrombosis and platelet levels below 1 million. Many docs go with aspirin only for lots of patients since the chemotherapy comes with a host of risks and negative side effects. Since you are ET rather than PV, you are not at additional risk of Leukocytosis or Erythrocytosis. Leukocytosis + Thrombocytosis does = increased risk for thrombosis. There are a few things worth checking on. It is important to know what your JAK2 allele burden is (% of mutated alleles on JAK2 gene). The test is called a JAK2 Mutation Quantitative Analysis. Less than 50% = more favorable prognosis / lighter symptom load. The other thing to watch is your prothrombin times ptt/aptt. If your platelets start to get really high and if ptt/aptt starts to look a bit too long, then the nurse/doc will run a von Willbrand panel. Oddly, for some of us, when platelet levels get too high, they stop clotting and we are at risk for hemorrhage (see Acquired von Willebrand Disease). Having said all that - sounds like you are really lucky to have providers who know what they are doing. Too many are focused on "sanitizing" blood numbers when the risk of doing that outweighs the putative benefits. Lots of folks only get down to your numbers with a lot of chemo, so you are relatively fortunate to be so mildly affected. Be well - be happy!
Camelian, your platelets seem to be close to normal. I would not worry too much about the numbers fluctuating in the range you report, especially since you are on aspirin and being frequently monitored. I am sure they look at your whites and your reds. I do think that people should be treated if they are symptomatic and you don't mention symptoms.
I’ve always read that anything under 450 is normal. I wish I could get back to those numbers. When I first got diagnosed I was at about 600,000. I’ve been as high as 800,000 with medication. So I wouldn’t worry too much. Just continue your check-ups and note any changes that you are feeling and share with your doctor.
Hello Camelian, I agree with the other MPNers. Your platelets are almost normal and haven't risen much at all . They do vary up and down . Mine were 530 in Nov 2018 ,620 this February,730 March and last week 702. I have only just started on Hydroxy again after several months off. I do know they are rising and they change significantly, but I'm sure you have nothing to worry about with that small rise in 3 months. Best wishes Fran
I've learnt so much about this condition from you lovely people and I read the posts dairy and follow threads of interest.
I do get symptoms similar to the ones reported on here:-headaches, episodes of Vertigo and muscle/ bone pain that change in severity but I'm not sure if this is related to ET or menopause??
Everyone is truly different. My platelets first went above the upper limit (400) at our hospital to 413 in 2004. They then dropped down the next year into the 300's and have bounced around since then usually going up by about 15 to 20k per year since then. Have been as high as 550 3 years ago and last test they were 507,000. I am 69 y.o. and only take aspirin so far. Go back to specialist end of May. cycling and swimming seem to keep symptoms away.
That's good news that you're still only taking aspirin at 69. The heomotologist and the nurse I saw in the clinic said I'd go on hydro when I am 60 irrespective of my platlet count but the nurse I seen on my last visit said not necessarily it would depend on other blood results and symptoms?? I'm very nervous about starting meds but I'm more scared of having a stroke and having to be Looked after therefore I've got mixed feeling s and sometimes think I'll be better off on it, well safer I suppose??
I've got to be the world's worse for taking meds but I understand the importance of it for condition. Well done for keeping so active🤗
I've been walking to work so I've made a start- trouble is I'm on a computer for most of the day so don't get much excercise other walking too and from work.
Your platelet count could vary by as much as 100 as part of your body response to stressors per my doc. So don't sweat the small changes. There is a shift in thinking away from the numbers game and more focus on symtoms in determining treatment. There is no direct correlation in risk of thrombosis based on numbers below
1 million. In the absense of Leukocytosis the doc is likely not real worried thus the conservative tx approach. Since you are JAK2+, it would be worth knowing what your mutant allele burden is. Less than 50% is predictive of a milder course. All the best.
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Confused! Do I have to follow up everything from my consultant with my GP?
Et triple negative platlets gone up to 1560
