Hello, I've got my test results last week and it says Jak2 Mutation tested, may platelets from 700+ goes to 1300+ last time but I'm on my period then I don't know if there's any relation.
I came back to doctor and he says I don't need to take Hydroxyurea yet since he says I'm young (28y/o) and Im healthy.
He said we just need to monitor platelet count so it won't go high 2000+ if then I need to take other measures.
Is there anything I should do to keep my platelets lower? any food I should eat or thinga I should do?
I would greatly appreciate your answers. Thank you very much.
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livelovelaugh1992
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Age is a factor when deciding treatment. I think you would be advised to consult an MPN Specialist rather than rely on your GP who is almost certainly not one. You can find a list of them on the MPN Website. Hope all goes well.
Hi I am consulting with a Hematologist right now, for now I am taking low dosage aspirin, sorry I didn't get to mention, and he said to come back a month after to monitor CBC.
I am pretty sure other members, more experienced than myself, will suggest seeing an MPN specialist for that. What I know, is that with platelets over 1m you should start considering the increased risk of bleeding. The 2m mark is too high (and rare I think) I assume you're asymptomatic, so that is good but the protocol (in France at least), is to consider platelet reduction medication above 800k (i.e. for low risk patients like yourself).
As for food, there are reports about omega-3 fatty acids and garlic having some impact on platelet count. I've been taking omega-3 supplements for 7 years before my ET/JAK2+ diagnosis and that didn't stop mine going from 430k to 630k. It could have delayed it (or accelerate it, for that matter) but I doubt you can fight this with nutritional changes.
Since bleeding could be more of an issue for you, I will not tell you about what can affect platelet behaviour (i.e. tendency for clotting), firstly because it is probably irrelevant in your case and secondly, because I don't believe it can really make that much of a difference.
My humble opinion is that as we're diagnosed with something that sounds (at least) so sinister, we should try and have a balanced diet and enjoy little pleasures (like food), with moderation. I personally find depriving yourself of little pleasures (like when starting strict and weird diets) causing more harm, at a mental level.
Thank you! Yes I'm trying my best to keep healthy at least, more vegetables, fiber and water haha I'm just kinda restless that I can't do anything specific to lower it or make it worse. My doctor said since I am young and have no other symptoms he don't require me yet and we just monitor the cbc for now, because the hydroxyurea may cause me unnecessary side effects, but I do take aspirin daily as prescribed. Thank you for your help. It's reassuring that people here are living a good life. The first time I got my Jak2+ results I was in despair and don't know what to do, having this platform to talk with people alike are a relief.
Hi, I too have ET Jak2 with high platelets, now above 1500. What I have read over the past few years in lots and lots of peer reviewed scientific papers on ET is that there is no correlation between platelet numbers and risk of thrombosis. There are other more important factors such as age ( again that varies, age >60-65 in different papers) previous thrombotic event, lifestyle factors such as smoking.
I found the paper “ Polycythemia vera and essential thrombocythemia: 2019 update on diagnosis, risk stratification and management “ very interesting and helpful.
I have tried various dietary things but have not found them to impact my platelet number. I did also discover I had several vitamin deficiencies which I have sorted out and feel so much better for doing so.
However eating healthy wholesome real food makes sense for everyone, plus a little exercise. Plus have some fun. I think laughter is the best medicine. Enjoy life 😁
Hi! Thank you for answering, so basically you're not taking any medicine for the ET JAK2, and just resolve the vitamin deficiency? The 1500+ platelet count is dangerous right? I kept thinking on my case I'd get sudden heart attacks or stroke which is scary haha or I'm just being too paranoid 😅
Hi, so i DO NOT take any cytoreductive drugs. I do take a little bit of aspirin, about 2 x a week suits me, but everyone is different.
Resolving vitamin deficiencies won't change your ET! But personally I did feel a lot better: less tired, less forgetful, stopped dropping things, lots more energy ... after correcting my vit B12 deficiency.
But you may not have any vit deficiency, so that may not be relevant for you. You could always ask your GP to check.
I do not consider my high platelets to be dangerous- for me- as I am fit, healthy, under 60, never smoked, have no other health conditions and eat very well - no processed food or sugar, just natural real food, mostly organic. I know there are others on this site who would freak out at those high numbers, but for me, it's fine. I'm OK with it.
All I am saying that everyone is an individual and the therefore the treatments also need to be individual. My personal preference is to avoid drugs for as long as possible but there may come a time when I may need them. I am just not in a rush yet, as all drugs come with side effects, and as I currently have no symptoms that interfere with my life, the side effects could be worse than the actual condition. It's a case of weighing up the pros and cons and only you can do that.
Keep asking questions. Keep reading the scientific papers. Talk with your doctors. But keep in mind, it's your body and only you can make the decisions about what is best for you.
I agree with what you said, I try to avoid taking medication too so I'm trying my best to live healthy haha, but it is true reading helps you to know that it is manageable, this page is really great, I've been reading and learning a lot.
Welcome to the forum. Love your screen name! It reflects a good attitude that will take you a long way in managing your ET.
You can likely manage the ET for a long time with aspirin only - unless you become symptomatic. Be ware that there are three risks that accompany ET - thrombosis, microvascular event, and hemorrhage. Sometimes on - sometimes all three in the same preson. The risk of hemorrhage is something to pay attention to the higher your platelet levels go. It is actually your risk for bleeding that can increase in correlation with your platelet levels.
There is a bleeding disorder called Acquired von Willebrand Syndrome. It used to be thought that this only occurred around 1.5 million, but now is known to occur starting around 800K. this disease is caused by a decrease in von Willebrand factors which are essential to healthy/normal coagulation. Your hematologist should have already given you a von Willebrand panel as part of your assessment. This would include a check of your prothrombin time - ptt/aptt - INR (clotting time). At platelet levels upwards of 1 million, this should be periodically rechecked. If you are positive for AcqvWBD then aspirin is contraindicated. Cytoreduction does become the treatment.
If you do need cytoreduction, hydroxyurea is not the first choice at your age. There is the possibility of leukemogenic progression with the long term (more than 10 years) use of HU. People of child bearing years typically would not opt for HU because it is teratogenic. For males it can cause oligospermia/azoospermia due to compromise to testicular tissues. This effect is not always reversible. Men are advised to consider sperm banking if they want to someday have children. If taking HU and considering having children, women must discontinue 6 months prior to conceiving. Men must d/c 12 months prior. Most MPN specialists would recommend considering Pegasys (or Besremi in the EU). Anagrelide and Jakafi are other second tier options.
Something to be aware of is that most hematologist do not have the KSAs to provide optimal care for MPNs. these are rare disorders and most regular hematologists only see a small handful of MPN patients in their entire careers. I learned this the hard way. My old hematologist had me misdiagnosed as ET when I had progressed to PV. I now have a MPN Specialist on my care team. I found the doc on this list.
Regarding diet, many of us are using a Mediterranean (anti-inflammatory) Diet. At the core, MPNs are inflammatory disorders. The JAK2 mutation causes inflammatory symptoms that go beyond increased hematopoiesis. This causes many of the secondary symptoms we experience. Controlling inflammation is vital to quality of life. It also does help control platelet levels. Note: some of us use supplements like Curcumin. If you are interested in complementary health options - send a note for a separate conversation on that topic.
Controlling thrombocytosis without medications requires understanding what drives it (beyond the JAK2 mutation). Reactive thombocytosis can be driven by inflammation, infection, injury, and hemorrhage (any form of bleeding). Iron deficiency can also drive platelet levels up. Controlling for those things will help to control platelet levels. Dealing these things will not cure the thrombocytosis, but will help to avoid exacerbating it.
Here are a couple of articles you may find helpful.
See this year's MPN Molecular Biology in particular
FYI - I was diagnosed with ET about 30 years ago (in my 30s). It progressed to PV about 7 years ago. I spent the majority of this time on aspirin-only. I have never had a single incident of thrombosis.
I want to take a moment to thank you for all your insights on this post. I just joined MPN group, having been diagnosed with JAK2. V617F. 2 months ago. I am 57 but have had one thrombotic event, but it was post-surgery a year ago, and the surgeon did not do an ultrasound, so still unsure. But, after the bone transplant in the knee, experienced severe pain in the back of the calf and then lower leg was discolored for several weeks. ( not fun and very scary). thank goodness I was on aspirin at the time, as per post-surgical protocol. My numbers back then were around 470-530, I guess that is why I was not flagged at risk prior to surgery. I know better now. Anyhow, I am interested to know about any more experience you had being only on aspirin protocol for most of the years you had ET diagnosis. I am in the middle of making a decision to go onto HU or not. My hematologist, who seems to be an MPN specialist, says I am borderline but is recommending 500 mg once daily of HU to begin with. Honestly, I am at the stage where I do recognize the signs of having had ET for some time without diagnosis ( fatigue, headaches, dizziness) but I am so very active and work a pretty stressful job in healthcare management, that I always attributed these to my workload. The inability to have my energy level from hiking and cycling, I figured was about getting older. I still push myself, but I now understand why my body pushes back at me.... I guess I am reaching out to you because you have experience, and also tremendous resources to share. I am not asking for specific support, just wanted to connect with someone whom I was very encouraged by ( Second hand from initial post you provided to Livelovelaugh) and to say thank you for your insights and for taking time to share these to those of us early on this journey.
I was diagnosed with ET in my 30s. Back then HU was the default treatment for everyone with ET. After a couple of years the hematologist took me off of it when the protocol changed. I did fine just being on aspirin for many years. I never had a single incident of thrombosis. While I used to tolerate HU, this is no longer so. I have been on it twice for 1 year periods, in 2013 and 2018 when I had spikes in thrombocytosis. This last time I experienced significant toxicity even at very low doses. HU was also ineffective in controlling the erythrocytosis as I had progressed to PV. The Interferons (Pegasys, Besremi) have been much more effective and easier to tolerate for me. Note that this is my experience. We are each different in how we respond to these medications.
There is an underlying decision that you will need to make about whether to engage in cytoreduction at all at this point. People with ET usually do not begin cytoreduction until age 60/65 unless they have known risk factors. Previous incidents of thrombosis would be a risk factor. There are other co-occurring medical conditions that are risk factors too. Based on what you have described, cytoreduction sounds like a reasonable consideration but not an absolutely necessary step at this point. It really depends on what your treatment goals and risk tolerance are.
Regarding treatment goals, there is more to managing ET than reducing risk of thrombosis. There are also risks of hemorrhage and microvascular symptoms to control. Issues like headaches and dizziness are often microvascular issues. There are also the secondary symptoms people with MPNs often experience. Fatigue is the most common of these. Many secondary symptoms are thought to be related to the overproduction of inflammatory cytokines. MPNs are at the core inflammatory disorders. Controlling inflammation and reducing symptoms is a key component of managing MPNs.
The decision about whether to initiate treatment other than aspirin should be based on what you want to get out of your treatment plan. The decision is based on a risk-benefit analysis of each of your options. It is also important to be clear which symptoms and risks you wish to address and which risks and adverse effects you are willing to accept.
It is very important to ensure that you review ALL of your treatment options with a MPN Specialist. If you are not sure whether your current hematologist is a MPN Specialist you can check on these lists, mpnforum.com/list-hem./pvreporter.com/mpn-speciali...
This is certainly not a black and white decision. For what it is worth, I would be considering cytoreduction in your situation. I would be very clear about the importance of doing more than just reducing risk of thrombosis. In my view, controlling the symptoms and adverse effects that negatively impact quality of life is just as, if not more, important. That is my approach. It will be important for you decide what your approach will be. We each have to make this decision for ourselves.
Very helpful. Thank you for taking the time to provide your insights and opinions. Your experience helps pave the way for those of us newer on the journey. Grateful.
Hi I was diagnosed in my early 40s with platelets around 700. Went up to the 900s but my haematologist at the time was happy to let me go up to 1500 as I had no other risk factor ( age, no smoking, no history of clotting) and no obvious symptoms. He was very keen to get me off the pill though. Managed on aspirin for a couple of years but next consultant wasn’t happy with numbers and moved me to hydroxy. Felt much better almost immediately ( hadn’t realised how tired I was) and numbers dropped to 400ish. Have been on hydroxy for a few years now but my consultant always seems more concerned about my haematocrit than actual platelets and recommends the odd venesection to bring it back to normal levels. He is also keen to start talking about moving to interferon due to the long term potential side effects of hydroxy as a ‘younger’ patient. Guess you might have a similar journey ahead. All the best.
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