Hello, be interest to know if anyone has chosen not to take medication for ET, only low dose aspirin and if it is viable through diet etc. Thank you
ET JAK2 positive - Anyone over 60 only on Aspiri... - MPN Voice
ET JAK2 positive - Anyone over 60 only on Aspirin? and able to treat condition naturally?
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lorikeet
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I’m 64 . JAK 2 pos. and trying my best to stay off chemo. Diagnosed a year ago.
I’ve seen a functional practitioner who recommended a herbal mix he made up and CBD 10 and curcumin oil , vit d reishi mushroom 3 times a day capsules , vit c , fish oils
My platelets remain to high but I feel good . Apart from clamp like feeling in head / face
SO , just got in touch with the homeopath I used to see who is also a conventional qualified Dr.
For past few days I’ve stopped mushrooms and herbal mix
Taking a homeopathic remedy 4 days . and Coriolus ( just today )
After 2 days my head is much clearer so hoping this will continue
taking low dose aspirin
I wouldn’t try prescribing myself , trouble is it’s expensive !!!
How high are your platelets ? And what about other bloods ? How do you feel ?
Thank you for your reply really appreciated , has taken me ages to post :)..Mine is a rather a long story, I am 63 and on low dose aspirin since diagnosed Oct 2019, prior the aspirin, I had many symptoms from Jan 2017, regular aura migraine, intermittent burning toes, fatigue and some thunderclap headaches...(after my own research into my blood tests in Feb 2017, it was clearly printed, suggest JAK2 test, sadly not followed up by doctor. and none of symptoms taken seriously i think...) Specialist advised I should have been on at least Aspirin from Feb 2017, followed up by bone marrow biopsy and HU...still rather annoyed as at times my symptoms were not easy and I would have made different plans and able to deal with in all)
So far since commencing aspirin, nil aura migraines or any headaches, I have burning toes very intermittently and fatigue.
This all happened when I was in Australia, I attending a doctors surgery practice of at least 8 doctors specialised in various illnesses, looks like my doctor did not request any feedback from them........I still shake my head and angry for not getting a second opinion...... 
I do have a lot of fatigue and also worries me having a stroke etc, which is part of anxiety with some other issues I am dealing with.
I was prescribed with 500mg HU to take every day in March this year, not yet commenced. A recent consultation, with another experienced specialist suggested I commence with 500mg on 3 alternative days per week to see how i go, Platelets have creeped up on regular basis to 730 ....
Ps anti inflammatory diet is worth looking up
I am age 65, JAK2+PV with erythrocytosis and thrombocytosis I am on a phlebotomy only protocol. No aspirin. No chemo. The MPN Specialist took me off the aspirin because my risk for hemorrhage was greater than my risk for thrombosis. This is the right approach for me for now. It may need to change. If the PV progresses, I will need to look at other options, likely PEGylated Interferon.
It is really important to consult with a MPN Specialist rather than a regular hematologist. Most hematologists do not have the KSAs to provide individualized care. They will apply the "standard protocol" because they do not have the experience to do anything else. The would be hydroxyurea + aspirin for ET age>60. This may or may not be the right approach for any specific person. Consult with a MPN Specialist to get optimal care mpnforum.com/list-hem./ .
Regarding complimentary health approaches, the answer would be yes to options that help. This does not necessarily mean huge differences in the number of platelets on your labs. It is a reference to controlling symptoms. Bear in mind, there is no linear relationship between platelet levels and symptoms below 1 million. That does not mean that thrombocytosis is not an issue. It means that it is more complicated than numbers. There is no value to "sanitizing" lab numbers per the MPN specialist I see.
You will find refences to a Mediterranean and/or anti-inflammatory diet. The short answer is yes they do help. They reduce your cardiovascular risk and help control the systemic inflammation that so often accompany a MPN. There are some supplements that can help. I had the best success with a bioavailable form of Curcumin. That made a big difference for me. Be aware that is a supplement is biologically active enough to help you, it can also hurt you and interact with other drugs you take. For example, fish oil significantly potentiates the blood thinning aspect of aspirin and increases you risk of hemorrhage. It you are over age 60, you would consider yourself to be at even greater increased risk. This is why it is so important to consult with a doc who is familiar with both complementary health and traditional Western medicine.
I hope that helps. Here is a great presentation by the MPN Specialist I consulted with.
vjhemonc.com/video/9rf073wi...
Thank you so much for your information, I will re read later as have to go out for a walk. Can you read my reply to Mostew? my first postings, otherwise I will revert. I did have a phone consultation with a new Haematologist who had 30+years dealing with MPN's and very experienced and caring. Decisions....
Glad to hear you are connected to a MPN Specialist. It makes a really big difference. We are each unique in how our MPN presents and in how we respond to treatment. We each need an individualized approach. The important thing is to treat the symptoms, not the numbers. They are not the same thing.
Regarding the HU, that is an individual decision. Some tolerate it OK. I did not. I had toxicity even at sub-therapeutic doses. If you are positive for significant symptoms, you may need more aggressive treatment than aspirin only. Some of the other treatment options may work better for your symptoms than HU. It would be worth talking to the MPN specialist about. Some options are less toxic than HU, but they ALL have a risk/benefit profile.
All the best.
Thank you again for your info; I think that is my dilemma, as u say it is "important thing is to treat the symptoms, not the numbers" after commencing with aspirin last Oct all symptoms have disappeared except the fatigue which is mangeable most of the time. The new Haematologist mentioned (phone consultation) i was 18% jak2...but did not explain the relevance..but he did reduce HU to 3 alternate days per week to see how I go, instead of everyday prescribed in Feb....Even that is already helpful but questions why I was prescribed it daily in the place by first Haematologist. Could it be due to the symptoms I had prior commencing Aspirin.... I will see if I can receive response via email to HAEM rre Jak2 ....Not yet commenced HU..
Hard to say why you were prescribed the dose of HU recommended. Sometimes it is just that different docs approach treatment differently. It really needs to be based on your individual profile. I would always ask "Why this med?" "Why this dose" "What are the risks/benefits?" "What are the alternative meds?"
The 18% JAK2 mutant allele burden is relevant. Very broadly speaking, less than 50% is indicative of a more favorable symptom burden and prognosis. There is a good bit of research on this. Not all of it is clear, but understanding is emerging. Here is just one article on this topic.
ncbi.nlm.nih.gov/pmc/articl...
If you have not seen this yet, there are a couple of great presentations. Be sure to watch the one on MPN Molecular Biology.
mpninfo.org/conferences/201...
Thank you, you are wealth of information 
I am 70 ET Jak2+ and take only aspirin so far. Platelets have been between 460 and 560 for last 3 years, last month was the 560 reading, first test in 6 mo. I have a local Heme and a MPN specialist who agree with treatment so far. Due to see the specialist sometime as it has been 1 year since I saw him due to covid. Diagnosed in 2017 but most likely have had mpn since 2006 when platelets first went above 400k, the upper limit at our hospital.
I’m 64 and only on aspirin - so far anyway 🤞🏼🤞🏼🤞🏼
I am totally asymptomatic as well, even though my numbers are over 1,000
Hello, do you have fatigue?...my energy level can change quite drastically. Does your Haematologist encourage you to commence with HU re your platelet level? Two haematologists urge me to commence even though my level has increased to 730 and I am Jak2 positive. I would really prefer not to take HU but in quandary re benefits and side effects.
No - no fatigue except that which ‘normal’ people would get? I work out at the gym every weekday and do some pretty hard work around the house and still cope as well as I ever did - my friends the same age say I’m fitter & stronger than they are? I have zero muscle aches (unless it’s gym-related) and no bone pain or migraines. I often wonder if my consistent gym program & ketogenic diet help?
My haem wants me to wait until I hit 1500 before considering anything other than aspirin - and then not HU, but interferon.
I am seeing an integrative medical practitioner and following her recommendations which seem to help with other aspects of my health, like insomnia.
That's interesting, which country are you in?
Australia
Strange, Queensland Haematologist advised Bone Marrow Biopsy first and then HU...Not had either. In England now, Bone Marrow not always carried out. but two haematologists advising HU although platelets elevated to 730. Maybe it has to do with my overall FBC results and Jak2 % , Australia and England, and in general, over 60 is considered serious for this ET. I used to work out at GYM regular in Oz but due to various circumstances and covid this has ceased.....When I left Oz, platelets were 550, a couple of months later 600 and creeped up to 730.
Strange, when my HAEM wants to reduce to under 600 and less, I am 63 with no symptoms on the aspirin, just fatigue, platelets a month ago 730...? I am in England and two Haemos have advised me to commence HU....In Queensland they wanted to do BMB and probably HU when platelets 550? (i did not have the BMB) so strange your HAEM is allowing to 1500...makes me wonder...
Sounds like you have a head-up hematologist who is not following the old protocol of hydroxyurea for everyone. So long as you stay asymptomatic, aspirin-only sounds like a good plan. Something to watch for is the risk of hemorrhage, which we can also get with thombocytosis. There is some research indicating that some people can get Acquired von Willebrand Disease (bleeding disorder) at levels around 800K. What I experienced once I got older (in 60s) is that my response to aspirin changed and I started having issues with excessive bleeding/bruising. Not at a dangerous level, but it was very annoying. The MPN-Specialist took me off aspirin as at age 64 he said my risk for hemorrhage was greater than my risk of thrombosis. Not all of the experts would agree on this, but it is the right choice for me.
I also see an Integrative Medicine Specialist. Sne has been very helpful in dealing with the systemic inflammation issues that accompany MPNs. FYI - insomnia can be a MPN-inflammation related issue. Thought to be related to cytokines. Recently started on Relora to support sleep. It does seem to help without any adverse sedation.
All the best.
Not heard of Relora...on the web it says it can work quite quickly, so might give it a try and might help with anxiety too. Prior the aspirin, I had regular ocular migraines, one a month then progressed to approx bi-weekly. It was weird, would last for about 20-30 minutes, zigzag flashing lines and sometimes in only one eye. *I noticed you asked about that in one of your posts....I also had a few shocking thunderclap headaches, moving was painful, luckily not regular. *thank you again for your help
So far so good with the Relora for me. It really does seem to help. No side effects so far. Be sure to let providers know you are taking it. If something can help you it can also hurt you and interact with other meds.
My ocular migraines we different in that they were silent. No pain at all. Just scintillation and faded vision across my entire visual field. Lasted 2 - 3 hours. I have had a few more incidents where the double vision got worse for a few hours. In hindsight, think it was migraine aura too. The most alarming thing was the 24 hours of hallucinatory palinopsia. Clearly the part of my brain where I had the tumor/surgery is acting up. We are just not sure why. Is it happening on its own or does PV-related migraine have something to do with it? We may never be sure. It appears that this overactivity may be calming down on its own. I sure hope so. Time will tell. Hopefully the magnesium supplements the Integrative Med NP prescribed will help as well.
Did you find something that helped with your migraines? My neurologist recommended Topamax, but I declined due to the side effect profile.
Sorry to hear about your tumour, is that all now sorted? if it can be? Luckily my ocular migraines only gave a slight headache afterwards. The thunderclap headaches were about 3/4 in a year, i was told to drink caffeine (purchased cola which I never normally drink, and was told to take 900mg pain relieve. It worked the next day it had gone but the last one was very very painful. This was before I was diagnosed and all my symptoms ignored with my elevated platelets by my local doctors (surgery of 8/9 doctors.).. It does surprise me that the aspirin has helped with nearly all of my symptoms..... I also had some fuzzy eyesight at times.... I certainly wish I had been more proactive and assertive in 2017-2019.. but alas not..... shaking head! I am sure I would made other plans for rest of my life.....anyway....still rather angry with my doctor.. I should report them to help other patients .....but takes a lot of concentration...
Am 58 and platelets 780. On baby aspirin. No talk of other medication yet thank goodness but remember they look at other bloods results too that form a whole picture. Will be interested to see any natural therapies others can suggest too. Yes fatigue too which hits me badly after eating for some strange reason.
Do you get that fatigue after eating a carb-heavy meal? Because that’s a normal post meal ‘slump’ ?
It seems any food I eat which is probably too much ha ha . But it is that overwhelming tiredness and often wake up early hours of the morning on the settee where the family give up on trying to wake me now. Have a full on active life so maybe to be expected under the circumstances
Yes - maybe just normal tiredness anyone would get? I used to get that huge post- meal slump when I was eating carb-rich meals. I rarely get it now on keto 🤷🏻♀️
Hi Deefen,
I am ET JAK2+, 53 years old, aspirin only. I have also chosen to go on a ketogenic diet since June. Did you start for it's anti- inflammatory properties or were you keto before?
No more energy slumps for me. I feel great eating this way and I really hope it is helping with the ET.
I’ve been LCHF then keto for about 8years - well before I was diagnosed with this. I’m in Australia but started keto when I was living in China over 6 yrs ago . I initially went low carb furcweight loss, but now I do it because I just feel so much better when I follow this way of eating - more energy, no afternoon energy slumps, no indigestion or acid reflux etc. in addition, my triglycerides on keto are way under 1 - which is a great cardiovascular indicator
Maybe that is the reason, FBC & JAK2 % results , need to investigate...where are you living? I am in England. Haematologists in OZ and England are requesting i commence HU, mainly I think....my age...
I just discussed this very question yesterday (Tuesday). I’ve been off Hydrea for almost 2 months but stayed on aspirin only. Count stayed down up until 2 weeks ago in the 300 but is creeping up to high 400 so we decided to start it again but 500 mg every three days. I’ve never had any problem with clots but don’t want to take a chance at 77. I’ll make another decision when counts go down again. Don’t like the idea of off and on again meds tho. I guess it comes down to personal decision and your own research. I don’t care for the other Chemo meds that can be used. While chemo is never a great idea I made the decision on my own research and current health problems. I also have hypertension. Good luck with your own decision.
Thank you, good luck to you too. I have copies of all my FBC and two JAK2 tests, can you suggest a good site that is helpful to clearly understand FBC, i have found a few but does not always give guidelines. I have looked at bloodwise/Mcmillian but do not find FBC levels advice...
Sorry it’s been so long to reply, but no, again sorry, I don’t know of any sites to obtain info on FBC other than what’s already out there. Just do a lot of digging! Getting info we need isn’t the easiest thing to do. 🤨
Hi there,
I am 73, JAK2 positive-was diagnosed about one year ago. I tried taking HU, JAKAFI, Anagralide . The only one that made me feel good was JAKAFI but my blood work went crazy, especially my liver enzymes. I am now only on 2 baby aspirin a day and take multi-vitamin, fish oil and some low dose cholesterol medication. Unfortunately my platelets are very high-around 1100. All my other blood work, including my HCT is close to normal. I spent July and August in TN working on a vegetable/flower farm working all day in the hot sun and felt fine. I live in FL and I walk 5-8 miles every day and also do some gym classes. I am due to visit my Hematologist the end of October and I will get blood work before then. Hopefully the platelets will not by any higher . Not sure what is next for me but as long as I feel fine I will try to stick with what I am doing.
Hello, at least you tried, you sound very active and healthy diet which is very important. When I was in Queensland, I was at the gym 3/4 times a week, walking etc and in the warmth, my platelets were 550. I was directly advised to take low dose aspirin which weirdly and thankfully ceased the regular ocular migraines and burning toes directly. I have not been exercising regular since January for many reasons + covid. I do try and walk at least 3 times a week I do suffer fatigue quite badly at times. I moved (one of my stupid decisions during a lot of circumstances) to England and after living Queensland 20+ years, finding hard to adapt to the cold...I was prescribed 500mg to take daily in February this year, did not...then a new Haematologist advised a few weeks ago, I could start on 500mg 3 alternative days per week to see how i progress. My platelets have increased from 550 in QLD to highest 775 since Oct last year. I should be grateful and just take it...but find it difficult commence due to how toxic it is.... Then on the other hand I am putting myself in jeopardy for blood clots.... I have had the ET since Feb 2017 and did have all the symptoms and only diagnosed Oct 2019..taking aspirin everyday is fine for me.... I think stress, not enough exercise does play quite a role in ET and MPNS in general.
I also have been lucky, previous always active and no medication.
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