Hi, i am worried and confused , i have high platelets 500-850 fluctuating since 5 months , i ws jak2 positive by one lab and negative from another lab , dont have any symptoms though , could it be ET ?? With or without jak2 ? Do platelets fluctuate in ET or they only go up without comjng down , im on aspirin only and 32 yrs old .
Also ive read and told by friends about this black seed , being told as a miracle seed to treat cancers it has some chemical in it thymboquinone which is anti cell growth and anti cancer ???? Dors anyone has precise info pls help
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Aojai
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Hi Aojai, I can understand that you are worried and confused, especially as you have been given different results. I would advise that you discuss this with your haematologist. I would also recommend that you read the information on our website about ET, it might help you to understand more mpnvoice.org.uk/about-mpns/....
With regards to the black seed cure, it is advisable to be very cautious about these claims and to take advice from your doctor about any medications. Maz
Hi maz , the link isnt conecting , do platelets go down in their own if its ET ?? Or its on a growing trend always ?
Also this black seed usage ive read over internet as it is anti tumor and anti cell proliferation my hemo says to keep a wait n watch strategy but i want to know if anyone in this group has experience with black seed or its oil and if theyve had ET with jak2 negative , does this mean it could b some other mutation ?? Or i need a BMB ?
Black seeds are natural flower extract seeds known to cure many diseases , my hemo said diet doesnt effect platelet fluctuation if they go over a mill ul have to start hydrea but im not clear even in jak2 pos or neg even if i was negative i still need meds ? Other than aspirin which im takkng daily
Yes ive read it , im taking seeds for now once a day , im searching for the oil and i need to consult for its consumption , oil has to be pure and medical grade unfortunately the brands here i cant trust maybe in US or UK can find pure extract which is approved by FDA etc
You can have ET and be JAK2 negative, in fact there are people who have ET and are triple negative, so they don't have JAK2, CALR or MPL mutations, I myself am triple negative ET. And yes, platelets do go up and down all the time. Maz
Thanks for the info , i might b triple neg too though with a confusion of jak2 i might run a third test im calr negative also , is jak2 positive more serious thank jak2 negative ??
And does stress and PTSD may cause these MPNs , ive had a rough life with stress , anxiety and this might b the cause is it ??
Im just 32 i read this hapens to older ppl , how could this hapen to me i think its because of my stressful life ? Is there anyone with the same scenario
Since ive been given low dose aspirin only , it does progresses with time could it still temain unprogressive or are MPNs chronic diseases that wont remain stable and will always progress with time without meds , is ET a malignant cancer?
Hi, if u are triple neg , is it obvious u might have some othet mut? Since the problem is all about cell mutation and it isnt detectable? Also if one person is neg could that mut become pos in future??
Also , could it be any other cancer is ur triple neg with ET ?? Pl if u have any info on my questions
I believe i have it at least 20 years. I am 36. I was and i am diagnosed with chronic anxiety also. As far as i am remember myself, i was an anxious person/kid.. i believe there is a link.Are you serious about beeing negative on one laboratory and positive in another???? I am negative for jak2 ,but i would prefer to be positive cause all new drugs target this mutation. Now i am more afraid
I have had high platelets since 5 months without symptoms one lab gave me jak2 pos and one neg so im confused the calr came negative, but platelets r still fluctuating btween 600 -900 im on aspirin only for now , it makes me triple neg for now but il do my jak from another lab to clear this confusion of pos from one and neg from another so im realy woried n confused , if anyone in the group can tell me if these tests can come positive now and negative in future or vice versa?? Also if u are more than 40 yrs abd hav symptoms even being triple neg u might need chemo drugs, im taking raw black seeds as herbal med just started ive heard alot of its cure with cell disorders and cancer etc with aspirin nothing else il try to avoid these chemo drugs as posible as they have adverse side effects so fingers crossed. Jak2 positive is more prone to clotting compared to jak2 neg
Im a young person just that i went thru stress i didnt got to research much and it has no causes but i think my platelets issue or ET caused by my stresful life events
I was diagnosed at age 40. I tried every alternative medicine that I read about and researched. I went to visit a doctor who practices Eastern and western medicine. He told me the miracle herb I was looking for didn’t exist. I know how you’re feeling about being so young. The chances of getting diagnosed as a young male are rare, but it does happen. Best of luck while you’re figuring this out
Hello. I found someone with my same situation...wow. My Jake is negative however I'm in my child bearing years and not open to hydra even though I've tried that regimen. Any suggestions? I was diagnosed in 2017 or so, bone marrow previously that resulted in negative jak2 in 2014
Oh really? Are you triple negative ET? I didn't know. What is going on with triple negative ET?? How serious or not is it? How many years do you have ET? If transfrorm to MF, will also be triple negative MF?
HI Aneliv, yes I am triple negative ET, I was diagnosed in 2003 and have been taking daily aspirin since the day I was told, and also have been taking Hydroxycarbamide for over 12 years now. I don't know the answer to your question of it transforming to MF and staying triple negative. Maz
What if i dont take hydrea or other drugs and i take only aspirin, since these drugs spoil other cell lines also along with supressing platelets since these r bone marrow supression drugs , my hemo said ul hav to take if it goes above 1000 and yes it has side effects
He also said diet doesnt effect platelets but i dont believe that , i hope it can cme down naturaly with diet a fruits n veg like garlic and pomegranates which have anti platelet effects does anybody has experience with this ?
It cn transform to MF making it post ET MF cuz of the over active cells the tissue scarring occurs causing MF but its rare to progress , its a cronic disease ehat ive read progression is variable person to person but its not must it wil progress
Hello, I had PV for 16 years (from age 41) before I moved onto MF. During that time I kept myself well using alternative therapies and managed to keep off the mainstream meds until the MF was confirmed. I now take Ruxolitinib and aspirin and I feel very well (thank goodness).. My thoughts are that stress and anxiety are behind most illnesses, and if you break down the "flight or fight" body reaction, you can see that our body goes into major blood production in case we decide to "fight". So, I would say, and I'm no expert, that taking up something that calms this response, mindfulness or meditation, tai chi, yoga, anything that calms the breathing and stress response, will help to create a sense of calm and allow you to feel better and a little more in control. As for the black seed oil, yes, I've tried it but, for me, it didn't have any real effect. The Blessed Seed was the company I used and they do the oil and capsules. The only thing I have found it invaluable for is taking the reaction out of insect bites when applied topically. I can tell you that we all go through the initial panic and fear soon after diagnosis, you are not alone, but rest assured that life will settle and continue and you will be offering advice to newbies on here in due course. In the meantime, give mindfulness or meditation a go, calm your breathing, find a space for your mind to relax, it may not change the level of your platelets but you will feel better and that, in the end, is what it's all about. Take care, it will get better, Christine
Ive been told and read online in researches to consume black seeds raw half teaspoon , some chemical TQ seems to effect cell proliferation , i hope it works , i havent tried any brand yet though im seeking to get its oil extracted maybe i hope it works , i dont want to go to these chemo meds cuz ive read they spoil other cell lines also so i dont think personaly to spoil other cell lines juat to fixup these shootig platelets... its awful and scary to think of its side effects
I took it a long time ago, 1 teaspoon daily, I can't remember how long for but long enough to see no change in my results. Most people stick to an anti-inflammatory diet with good clean water to keep the blood flowing well. You will have to investigate and see what resonates for you. If I look back over my results from the last 21 years my platelets and white cells have fluctuated a lot, but then thinking back to what was going on in my life at the time, a hike in numbers always correlated with a stressful situation going on. As ever, it's always easier to see these connections looking back, the benefits of hindsight etc, but the one thing that has never failed me is taking the time to quiet my mind and asking for help or guidance from your body, the universe or anything you believe in, and something or someone helpful always pops up when you're least expecting it. This is a long journey that you have just begun, take the time to enjoy life now, one day at a time, if you feel well, enjoy it.
Firstly, I can sense the panic and anxiety in your messages and I want you to understand this, you are young and if you have no symptoms then that's a good thing. Please don't stress or panic or worry. Many of us live very well with PV, ET and even MF. I am now 45 diagnosed 10 years ago with PV, I also have high platelets. Don't get too caught up in the numbers, they are not dangerously high. Mine have hit 999 before and I was ok. I sit around 400 - 600 mostly. I also have bladder cancer since 2014 and post menopause (yes early onset), my issue is fatigue however, I am taking black seed oil and as someone mentioned the best company that is trustworthy is The Blessed Seed. I have personally had good results since taking it but I can not confirm it is just that as I have also been cutting out coffee, alcohol and sugar 3 things that is not only good for my cancer but also for the menopause. I am on aspirin daily. I eat healthy and follow a vegan lifestyle, aiming to be whole foods plant based. I also take a high CBD from a cancer charity. But there is no quick fix, no magic cure in life, you have to understand that everything comes from healing, whether it be physical or emotional. I am going to update my blog soon if you wish to read it, I will post a link shortly. Anyway back to the black seed oil, all I can say is from experience it has helped with my immune system and also since I started taking it I went 9 months without needing a venesection for my PV and my bladder tumours have become less, and instead of needing surgery I am now having laser treatment. Now I can't say for sure it is due to that but I feel it is linked, and a combination of things. It won't hurt to try it, but just remember there is no known CURE for PV or ET or MF, but they are manageable conditions. I also believe we should all be focussing on HEALING. Namaste x
In addition to black seed oil, investigate red palm tocotrienol, delta tocotrienol from annatto, selenium, liposomal C and liposomal curcumin, boron, magnesium, B complex together with benfotiamine and astaxanthin as they apply with ET. Red palm oil reduced my wife's platelets. Delta tocotrienol has many benefits you should check out. Liposomal C is also a JAK2 inhibitor as is curcumin, astaxanthin, tocotrienol which is also a JAK1 and STAT3 inhibitor. Magnesium is needed to create enzymes needed to activate many processes including thiamine. Stress causes loss of magnesium and a diet or supplementation of it is needed everyday. Magnesium also keeps platelets from sticking together. Selenium will be needed too. Finally, look into K2 MK4 & MK7 as it applies to MPN's & cancers. Keep a health gut. Before using a supplement get approval from your health professional.
Do read the information that Mazcd has suggested. A few things to bear in mind.
1. thrombocytosis is when you have platelet levels over 450K.
2. Thrombocytosis can be secondary, caused by another disease.
3. Another term you will hear is reactive thrombocytosis, which is when your platelet levels increase as a reaction to something. This is of particular note if you already have elevated platelet levels.
4. Everyone's platelet levels vary naturally in reaction to many things including inflammation, injury or illness. Platelet levels can vary by 100k each day per my hematologist.
5. Essential Thrombocythemia (ET) is a primary disease - a Myeloproliferative Neoplasm. Diagnosis is made based on specific criteria. The most common gene mutation that causes ET is JAK2. CALR and MPL mutations are also possible. If you have ET and none of those three, that is ET-triple negative.
I would think you doc will be repeating the JAK2 test since you got mixed results. Labs do make mistakes, so you want to be sure. If you are JAK2 positive, then you will want to know what your JAK2 Mutant Allele Burden is. They may have already checked this. It will show as % on the lab. This is significant in term of symptom burden and prognosis.
Please do be careful about the many claims for "natural" cures out there. While there are some very useful complimentary health approaches, there is also a lot of misleading information and false cures out there. Many traditional Western medical practitioners are not knowledgeable about complimentary health and are dismissive of it. If you want to look into these approaches, be sure to find a reliable professional who can guide you. I use an Integrative/Functional Medicine physician for this purpose. A good notion to follow - if something is biologically active enough to help you, it can also hurt you. These supplements do interact with other medications (e.g. Fish Oil is contraindicated with aspirin as it potentiates the blood thinning too much).
FYI - I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. The vast majority of this time, I was on aspirin only. I have never had any thrombosis - no DVTs, no TIAs, no MPN-related cardiac events. I have actually had more bothersome effects from the other things that the JAK2 mutation can cause that are related to an increase in the production of inflammatory cytokines (systemic inflammation). I have lead a rich life despite the MPN and its progression. I was diagnosed in my early 30s just as you have been. It is upsetting to find out that you have a "cancer" - but do know that nearly all of us with ET live normal or near normal life spans. There can be challenges along the way, but they can be dealt with. There are promising emerging treatment options on the horizon.
Please try not to worry too much. You can get this sorted out and identify an appropriate treatment plan. If you have not already consulted a MPN-Specialist. please be sure to do so. MPNs are rare disorders (1/300,000) and many docs, even hematologists, do not have the KSAs to provide optimal treatment. Here is a link to patient recommended docs with MPN expertise. mpnforum.com/list-hem/
- can a neg jak2 turn into positive later on in life ? Mutation disorders occur permanently ?? Do u need to check mutations frequently or one test and diagnosis is enough for lifetime ??
- is it understood that MPNs progress with time and progression being a must ? Has anyone gone into remission without chemo / cytoreduction/ bone marow supresion drugs? Inshort naturaly remission ?
- can diet affect cell production ?
- is jak2 pos ET more fatal than jak2 neg ET ?
- ive been told if a person is triple negative thrn NGS next gen sequencing tests r done checking for more mutations or BMB?
- i did my cbc today after a month platelets r 610 approx since last 5 months hovering 550-800 , he said ur 32 and low risk for now and has kept me on aspirin says ul need the drugs once u cross 1000 i asked wil it progress t9 which he said yes cuz it progresses with time , even if im triple neg ?? my hemo isnt very understanding and asked me to do jak2 tests again and im asking questions here for real life experiences thanks alot, im trying to adjust the worry with life as of now everything seems to stand still
Yes ..flactuate but usually if no treatment platelets would really go high like me when I was 32 years old no symptoms but eventually I develop it as age increases and now so many sypmtoms and under treatment.
I am 35 right now turning 36 this year. Yeah I was so disappointed having a cancer never in my dream. But here it is now...I can't resist it...lol...this disease will be with me for the rest of my life and I must accept that..hard at first but there is nothing I can..I have still so many dreams in life like having a family a child and a husband but now that I have this seems difficult. But life must go on....and always prayed that we can endure.
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