Hi, just wondering if anyone has any advice for me I have been diagnosed with ET last june with a platelet count of 987 put on low dose aspirin 75 mg.Since then my platlets have jumped about they went to 1280 back to 990 and have risen constantly to 1420 now no major symptoms,
I am triple negative
Has anyone got any ideas on how to lower the platelet count naturally / turmeric / ginger/cbd oil can these affect the aspirin I am open to anything?
Thanks
hi Mike I was diagnosed last august with triple negative ET also I’m on hydroxy cabamide 500mg daily my platelets are 416 was at hospital yesterday so they are stable do you not take this drug?
Hi thanks,Not yet my consultant is monitoring the situation but if I go over 1500 I will be put on this.Just looking for any natural treatment before that to see if it could drop them as I say I have no major symptoms.
ok sorry I could not be more helpful goid luck
No problem, i am new on this so it's good to chat thanks.
your welcome
I have ET no symptoms tried various food options & natural things . Nothing works. If you imagine the platelets producing & unable to switch off only medication works. I am fit healthy & many sport hobbies . Unfortunately even Mediterranean diet etc will not solve this but will keep you healthy. I was lucky to suspect my problem from a sports injury not healing . My platelets were 590 on diagnoses. Took Hydroxy 500 mg but body rejected it drastically. Started on Peg Interferon also body didn’t like but reduced to low dose & ok. It does reduce platelets slowly but I sought advice from MPN. Haemotology are very good but unfortunately needed another opinion once body rejected drugs . Julia . UK.
Hi Julia, I can see what you are saying if we could park the diagnosis in the back of our minds and keep the stress levels down it could be as good as diet.Sorry that the medications were not straight forward for you,
We're you put on the hydroxy at 590
Was the bruising a factor in that decision.
Thanks mike
I injured shoulder sailing in the September but because Covid times didn’t get MRI for 7months. It wasn’t healing & nagged Dr to take bloods as a friend died of bone cancer they missed from a shoulder injury . They never did bloods till too late. Unfortunately Drs were not helpful as I looked well !! Took 6 visits lots of nagging to get correct bloods sent off . First bloods came normal as just sent for wrong tests . Platelets came back raised sent Haemotology bloods sent away. 5 days later called to hospital with ET diagnosis. Told I needed to be on Hydroxy to reduce platelets. It was horrendous medication for me . Turned into a none moving Zombie . After 6 weeks refused to continue & contacted Professor Harrison at Guys hospital . I got approved for Peg Interferon injections. 90 weekly. Body rejected it . Blinding headaches. Of everything 8 weeks . Started again on only 30 monthly interferon . No bad reactions . I currently working on tall ship in Carribean with disabled sailors for a month . Feel fit & fine. Hoping bloods won’t have risen drastically but do feel the interferon best for me . No escaping the fact I have ET & can see my platelets have been rising on nhs records for 4 years . I guess if not known I maybe had a stroke or worse. It’s only rare as no one knows they have it unless symptoms . I take 75 mg aspirin daily. I read lots on this disease but you can either worry & think the worse or find a drug that suits to control it. I hate all drugs & taken none all my life. Unfortunately with this the platelets cannot be controlled without it . The interferon bought mine down from 590 to 300 in 5 weeks on 90 but now monthly on 30 it will be slower but tolerable . Hope this helps ease your thoughts 👍. Julia .
Exeter21, discuss having a transplant with your specialist. Yeah I know, the doctor says It's ET and you'll live a normal life. Is your life normal now? The older one gets the opportunity may no longer be available for many reasons a progression occurs in the meantime. When my wife turned seventy her oncologist retired and the new one mentioned she was no longer a candidate for a transplant. Only medications were discussed before and now a cure thru a transplant could not be exercised because previously she was was not made aware of it and now too old! I lost her August of last year when it progressed to leukemia and treatment was ended. I believe a transplant would have spared her the hell she endured in the final years.
I’m very sorry for your sad loss ♥️
I'm so sorry about your wife, and that she was one of the extremely unlucky few to progress to leukemia. I hope you have the support you need.
However, Exeter21 has ET and I'm fairly sure that SCT would not be an option. My SCT consultant warned me that SCT, even if successful, could reduce my quality of life significantly. I have been lucky and am doing okay so far but if I "only" had ET, there's no way I would risk it or put myself through such a gruelling process.
Thank you for your condolance. Every patients situation is unique and keeping abreast of the range ot treatments available at each stage offers an opportunity for an informed decision. One suggestion I can offer you is to maintain a high level of activated thiamine (vitamin B1), thiamine requires adequate magnesium for activation. It appears pre and post SCT patients have fewer complications with activated thiamine. A search on : thiamine deficiency in stem cell transplant patients that may address some of your concerns.
Thank you for your thoughts, although I don't have any particular concerns about my post transplant health. My medical team are monitoring me as they will be for a long time. However, I will have a look at the thiamine information - interesting.
Please do. A factor that may have made my wife's case more agressive than others was she worked in an industrial lab involving benzene and toluene. Recently I learned it has been known since 1938 they cause myelofibrosis even though Doctors at a prominent cancer hospital assured her it wasn't the chemicals when she went for a second opinion after ET was diagnosed in 1992. I encourage you to keep a weather eye out for these chemicals in products commonly in use.
it’s not uncommon for platelets at that level to jump up and down by say 200
Mike1974, when my wife's platelet count went over a million, 50 mg twice a day of palm oil tocotrienol lowered her platelets. Annatto tocotrienol may do the same. Always consult with your health care professional before using any supplement.
Mike1974, that's red palm oil. If you haven't already, remove inflammatory things like sugars, seed oils and high carbs from your diet. Look into flavinoids, as a rule they have a low absorption rate so look for curcumin enhanced absorption for example. Filter out chlorine, floride and as many other nastys from your water. Geranylgeraniol is an orally acitve vitamin K2 sub-type. It along with K2MK4 is worth your time to study for ET. Dr Weston Price, a dentist, called K2MK4 Activator-X. Check it out for natural sources.
Hello and welcome to the forum. this is a great place to be when managing a MPN.
I was diagnosed with ET about 30 years ago. it progressed to PV about 9 years ago. My platelets have cycled between the 500s and 900s based on what was going on in my body. Despite this, I have never had a significant thrombotic event. When my PLT > 800 I did have a tendency to hemorrhage (bleed/bruise) more, particularly when taking aspirin. I also experienced erythromelalgia when I was off aspirin. Going back on aspirin solved this problem.
There are a number of things that can cause reactive thrombocytosis, exacerbating the problem with ET. Injury, infection, stress, bleeding, and inflammation can all increase thrombocytosis. Managing inflammation is a key component of treating MPNs. At the core, MPNs are inflammatory disorders. The deregulation of the JAK-STAT pathway does more than make the body make too many platelets. It also causes the overproduction of inflammatory cytokines. Systemic inflammation is not a good thing.
Pte82 made some excellent suggestions about reducing inflammation in a more natural way. I would add that I have had excellent response to a liposomal form of curcumin. Something to be aware of is that many anti-inflammatory agents can potentiate the blood thinning effect of aspirin. It is advisable to consult with a medical professional who is familiar with supplement-medication interactions. This is not all docs as many do not have this knowledge base. that is why I consult with an Integrative/Functional medicine doc. There are also some helpful on-line resources.
reference.medscape.com/drug...
mskcc.org/cancer-care/diagn...
Given that your platelets are above 1000, you should already have had a von Willebrand Panel done. Even if you do not have Acquired von Willebrand Disease, you would still be at risk for hemorrhage as well as thrombosis. This is something to monitor and review with a MPN Specialist for case-specific advice. If you do need to initiate cytoreduction, you have several options to choose from. If the need arises, it is best to review all of your options with your care team.
Wishing you all the best moving forward.
Thanks Hunter, I will have a look at all the suggestions and see I'd I can pull something together.Mike
Might sound strange....but, look into either candida diet, and/or a strict ketogenic diet along with fasting....may not seem like a connection could be there, but if you're interested in doing something natural (as I am)., then it's worth a look into. If you are interested in more information or a direction (ie: authors, books) let me know. Good luck to you and sorry to hear about your symptoms and diagnosis!
Thanks I am going to have to have a good look at these and see.Mike
hi welcome. I’ve tried various things nothing works I’m afraid although if you start medication you might find various vitamins / minerals worth taking.
Because of my age and medical history I was put on meds straight away mine were over 800. You might think you don’t have any symptoms but put on a low dose of meds you might realise you have.
We are all so different.
Mine have lowered a little yesterday at consultation ,I eat an avocado every day I am sure it's helping I was 575 went to 535 hovered for a while then dropped to 403 went up in last consultation to 435 now 402 been eating avocado for 2 month and walk 5 mile a day through the the day worth a try
Hi everything is worth a go and if its what you think is working for you them great.i hope they stay down for you.Thanks Mike
I have been treated for ET/ Jak2 for 3 years on 500 mg of Hydroxyurea. It has brought my platelets down to 320. Risks for not treating high platelets depending upon your age can be stroke or heart attack. I am 68 and in that category. I would find an MPN specialist to make that determination. Hope this helps! Wish you the best of luck!
When i was first diagnosed with Et my platelets where 1300. For the next 7 or so years i tried many natural therapies, different food, ways of eating, fasting, cuting out all junk food. Took up running and weight training. Different suppliments, different herbs. Etc. I become very fit, lost 15kg but my platelets remained roughly the same.
Eventually when i was about 45 yo i was getting worring symptoms. So i resigned myself to taking Hydroxyurea. Now platelets are good and i dont have any symptoms.
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