Anyone had MPN for a few years and maybe had high but stable platelets for quite a long time and was trying to stay off chemo .?
Then platelets started going up ?
Just had latest results . Platelets have been between 800 and 900 for a year and a half.
Consultant said it was ok to put off meds till 1500.
The nurse I spoke to today reckons steady means disease not progressing . What do you think ?
I was diagnosed just over a year and a half ago with JAK2 positive . Seeing a functional practitioner and taking various natural things to try and help.
Keep hoping platelets will reduce.
I guess I should be happy they haven’t gone up and all other bloods are good!!!
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Mostew
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Hi ive had ET and Jack2 positive since March 2014 but I didnt find out or get diagnosed tell end of march this year bear in mind my platelets are not has high has yours,found out 2014 was 498 then 2016 were 698 then 2018 were 701 then doctors sent me to get check has jump quite high said from 2014 to 2016 but started me on 75mg asprin March 2020 then 5ty April platelets went down again 598 then July went bk up again to 691 then oct gone bk down again to 598 so mine been like this up down since 2014 stable for now with numbers am getting my bloods are okay for now aswell my next appointment is after New year and too get my bloods done again then but told me only be worried if my platelets kept going high and high said to me to start being concerned if my platelets get over 1200 all the best to u 😊Xx
Yes me too has am only on 75mg asprin started me on this march stress me to have a healthy lifestyle and diet so that might of help me aswell has taking 75mg asprin daily only to be concerned if keep going up and up ive had this since 2014 so been 6 years but was going up bit from 2014 to 2018 but since started me in asprin been going up and down bit from march 2020 tell now,ive got arthritis in my left knee and also problems with hip pains had that aswell for couple of years not too bad with it just get worse winter times not carnt cope with i get quite a few pins needles in my feet that could be due to arthritis but I do get sometimes in my hands back pain and sometimes ax feel tired alot but part from all am okays in myself Xxxx
I think you should mention pins and needles in feet to your heamo. It could be a symptom.
I’ve experienced it once and mentioned it to my blood nurse. Because it’s only been once she wasn’t concerned. If it persists she said they would double the asprin.
I have had a MPN for 30 years. Was ET - now PV. Platelets typically range in the low 500s to mid 700s. Sometimes spikes up into the 900s. I have never had a single incident of thrombosis. I do not need to use cytoreduction at this point. Phlebotomy-only is my current treatment protocol.
The short version is I think your consultant is right. You do not need meds right now (other than maybe aspirin). There is no linear relationship between platelet levels and risk of thrombosis, particularly below 1 million. You may actually be more at risk for hemorrhage. In the absence of symptoms other than abnormal lab numbers, the risks of meds would not justify the putative benefits. The thing to understand is that platelets do not just stick together on their own, even when there are too many of them. It is more complex than that, The issue is actually about how your blood cells behave. The coagulation cascade is complex. Each person with a MPN has a unique risk profile. Some can tolerate platelet levels about 1 million. Others have problems at 800K. Your treatment plan needs to be based on how your MPN presents.
Symptom I have is a sort of clamped feeling in my head . Not noticeable when doing things only when still .
Interesting to hear how unique our reaction is
My first consultant was insisting on meds immediately. And very condescending when I resisted his advice. Changed after about 9 months . That was the first time I was told it was ok to leave unmediated apart from aspirin
If you have not already mentioned it to your MPN Specialist, I would do so. It is likely that you need nothing more than standard headache treatment like acetaminophen, but it pays to be careful. Due to my having both PV and Neurofibromatosis my NF Specialist did a routine screening MRI, even though I had no symptoms. Turns out I hade a NF-related brain tumor. I am a true believer is aggressive diagnostics and conservative treatment.
Ive never had a headache before a few months ago. Did mention to consultant. She recommended pain killers but not bothersome enough to take. And don't want to mask symptoms..
I would lay pretty big odds this is about systemic inflammation related to the MPN. Very probable. Note that migraine is also associate with MPNs. Just don't assume that is what it is. Check it out.
Hunter - I should add that all my numbers for other tests are within range with exception of last visit with NP. Told I have Chronic Kidney Disease stage 3. She said that's an early stage.
Well after the horrible Green Laser PVP surgery, heart surgery, brain surgery, and jaw surgery - the visual migraines and hallucinatory palinopsia episode were just a tad more than I wanted on my plate. Like the PV is not enough. The good news is that this point, conservative treatment for the visual migraine/palinopsia does seems to be working. I REALLY do NOT want to need to use an anti-seizure med to treat. Side effects are most bothersome (have been on Lyrica and Keppra before - YUCK!)
Continuing to be hopeful that what I am doing will work.
I'm newly diagnosed with ET JAK2+. In 6 weeks my platelet counts have been 749 & 791 in that order. I'm 72 & on 3 blood pressure meds. My hematologist (who I really like) is starting me on 500mg of Hydrea and will measure platelet levels adjusting dose until they drop. She said if I were younger, she would have me take aspirin but my age & hypertension put me in a higher risk category. My NP tells me I'm in good health other than this (I work at it). An untra sound of my spleen found it to be perfect in size. No prior incidences of thrombosis, no symptoms with this & it's possible I've had it for last 3-4 years because last CBC was 2016. I just started the Hydrea on Tuesday but am loathe to take it until I have to. She will do a CBC in three weeks. I'm thinking: 1) Take Hydrea for that time and see where platelet levels are & stay at the 500mg if levels stay at or below 800-1500, 2) Quit Hydrea after that, have CBC in 2 months - eventually develop a range. If numbers stay in that range, no Hydrea. Continue taking 85mg aspirin daily. I've also been taking 4000 mg daily of Omega-3 from fish oil & believe that also has anticoagulant properties. Thoughts? Really appreciate your input on this forum. Very informative & helpful to me. Thank much!
I can see why cytoreduction is indicated given hypertension and kidney disease. Hope the HU works for you without significant side effects. Do be aware that HU can impact kidney function. Would be sure to discuss this as well as the other options. Not saying don't take it - just know what to watch for (e.g. edema).
FYI - your platelet levels are not that bad. Platelet levels can fluctuate by as much a 100K in 1 day. This is normal. It is the trend over time that matters. HU is cytostatic, so it should reduce the blood cell numbers to some degree. Suggest talking about the goal of treatment (sanitizing blood cell numbers vs controlling symptoms) so you are clear on the treatment goal.
Thanks Hunter. I don't have enough CBC counts to determine a trend. That is one of the things I want to discuss with my Hematologist. The treatment goal according to her is to get the platelet levels down. All my CBC's before 2016 hovered around the 400's (just above or below). After info on this forum, I think I'd be comfortable not taking the H if #'s stay under 1500 and taking aspirin or something like plavix given the CDK3. Going to educate myself on the coagulation complex. I have a lot to consider. Again, thank you for sharing your wealth of knowledge on this.
It is important to understand how the coagulation cascade works to understand what treatment is needed and why. It is not just about how many platelets and other blood cells you have. It is about how those blood cells behave. My hematologist explained platelets are like bricks. They do not stick together just because there are too many of them. You need the mortar (coagulation cascade) for that to happen. The coagulation cascade is quite complex and inappropriate triggers for thrombosis involves complex cell biology and abnormal cell function (more than just "too many"). I still only partially understand it myself. Working on it though.
Here are a couple of resources you may find interesting, Not directly about the coagulation cascade, but relevant to what you are deciding,
Hello Mostew, your picture sounds very similar to mine! My platelets have been stable around the 700 / 800 point for the last cpl of years with the slight fluctuations not being significant. They steadily went up to just below 900 in Jan then have gone back to fluctuating around the 700 mark this year.
My haematologist, like yours, is not planning to start me on treatment until they're over 1500 - and even at that point he may not if I'm my risk factors are still low, so like you I'm taking baby aspirin & being frequently monitored. My age, general health and lack of previous thrombotic events were the factors behind my haematologist's approach. That and only starting the 'harsher' medication if we absolutely had to - something that I really value.
My haem also told me that this stabilization may last for month or years or always and whilst the platelets are not hiking up I'm clinically stable - and yes you're right, it's an indication that the disease isn't progressing. He also told me it's all the more reason to check regularly because it is important to look for early indicators or change.
You mentioned seeing that you're seeing a functional practitioner. May I ask where you're based and if you recommend them? I've been wanting to see someone for some time.
I hope you continue to remain stable & keep well!!!
Like you, I have ET jak2 positive. I was diagnosed 8 years ago and my platelets have steadily gone up, now at around the 700-800 mark for the past couple of years (although I've had bloods done a week ago that haven't been reported on yet... Waiting for my GP to contact me)
I take clopidogrel only (I tolerated aspirin for a few years, but started having stomach issues so was switched and now on lansoprazole to protect my stomach lining too)
My haematologist has told me that once my platelets are over 1000 he'd want to start me on other meds. I'm not keen and doing everything possible to keep healthy - exercise and very healthy, sometimes organic, veggie diet. I guess I have age on my side too being 43, and no thrombotic events.
It's interesting reading posts like yours that feel similar to my own situation, thank you - keep us posted!
As a side note, how often do people have their bloods checked? Mine are every 6 months currently.
You do sound similar apart from age . I’m 64 which is considered high risk .
But I feel so well better than years ago ... do Qi gong , mediate , good food etc, so MAYBE that all lowers risk ( big maybe !)
The functional practitioner is Chris Etheridge . He lives in Epping . Saw him once , did round trip from Norfolk . Then just emails . Not ideal . But he does specialise in cancer .
If you can afford to see her , I would think
Dr Saskia H. Kloppenburg Vieth
Consultant in General Internal Medicine and Specialist in Complementary Cancer Care. Is a good choice as she is a conventional Dr . .
Very expensive though
Yes I have made sure I have regular blood checks
Let me know if you decide to see either of above . It’s good to have support.(as well as on here) !
Functional med docs out of pocket are expensive, but worth it. Really great to have a doc that pays attention to nutrition, systemic inflammation and knows how complimentary health interventions interact with conventional Western medicine. My Functional med doc also supports the practice of Qigong. I am working with my Sifu on various forms. So far have covered: The Six Healing Sounds, Taiji Gigong 10 forms, Tai Qi Quan 24 form, Eight Brocades Standing, and several mediation forms. Currently working on a Gunfu fist set. The practice of Qigong and Gungfu have been very helpful Glad to hear you are doing it too.
ALl the best my friend
Hi Mostew,
I have had ET Jak2+ for a few years with high stable platelets and no treatment (my choice).
I visited GP 4 years ago with symptoms I thought were either menopause (aged 49 then) or vitamin deficiencies. Did not expect high platelets which were around 1300. A past blood test in 2005 also showed raised platelets but no one said anything about it then.
Anyway, a few vitamin deficiencies showed up as well and for me vit B12 was a game changer. All the symptoms I went to GP with vanished within weeks, even the erythromelalgia. Thyroid results also looked like thyroid was struggling a bit so I have corrected this too.(If I lived in USA, probably would have been treated by GP but not bad enough for UK or NL.)
I definitely didn’t want any toxic drugs with side effects when I was feeling so well, was relatively young, and had had no previous thrombosis. Maybe if I had been over 60, I might have considered it. Felt way too young to be on drugs.
My Haematologist was very keen for me to go on a blood thinner, which I reluctantly took for a couple of months. Did not suit me, as I was getting loads of bruises and it made me feel quite dizzy. I kind of thought if I am getting big bruises on the outside, what is happening on the inside where I can’t see? So stopped those. Haem not happy and he told me I was going to die of a blood clot. So I told him I would see him 1x a year, seemed ridiculous to be paying him 240 euro’s a time for his useless service. ( I live abroad so we have private health insurance)
So over the 4 years, my platelets have remained around 1200-1400, although it is a bit confusing as on the 2 occasions when I had 2 blood tests within an hour, the difference has been around 300, one time higher and one time lower. The haem. could not explain this difference. His usual reply to my questions is he doesn’t know or doesn’t remember
(He is also completely clueless about B12)
However, having read many books on diet, cancer etc, I have made changes to my lifestyle. I was already quite sporty and play tennis regularly. I’m not overweight but I have many family members who are and some have diabetes. So, I have gone to very low carb diet to eliminate unnecessary sugars. Have added in extra healthy fats.
I gave up work – (I was self employed)- so that I could travel a bit more with my husband, visit family etc. I take quite a few supplements, vits/minerals. Taken up some new hobbies and some old ones again.
Over the last year, I have started to get erythromelalgia in my toes a bit again. I now take ½ dispersible aspirin after food, usually every 5th day. (I have tried the enteric coated ones, but they do absolutely nothing.) That controls my symptoms very well.
Interestingly, with my diet changes, although my platelets had only gone down 100 (not convinced this is really significant), the other tests for liver, kidney etc were improved, not that they were out of range before, but some were nearer the top end.
So all in all, feeling pretty healthy with a zest for life.
Great to read what’s been going on with you, especially what your Heamo .said . It’s unbelievable how they don’t realise that wise communication should be a basic part of medicine Glad I don’t have to pay thanks to NHS
So important to have support . This forum is great for that isn’t it..
Going the natural way is very much trial and error.
I’ll get a B12 blood test .
Aspirin seems fine for me despite I’ve always had a sensitive stomach
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