I’m new to site. Diagnosed with JAK 2 ET ABOUT 9 months ago . I’m trying not to take chemo drug . Platelets rose to 920 so decided if still up a month later would take hydroxycarbamide BUT down to 760 ! A month later up to 820 . Now feeling disheartened tired of trying
Taking CBD OIL high dose. Curcummin high dose Vit d. Rishi mushroom capsules
Seeing Ayurvedic practioner .
Has anyone found platelets fluctuate ?
Apart from a few toes purplish at times and a new rash on back I don’t have symptoms
Would appreciate being in touch with others who are trying( or did try) alternative treatments
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Hi, platelets fluctuate for all sorts of reasons eg inflammation, virus, even stress so don’t be disheartened, keep trying, you never know you may stumble on something which may help you. I think if there is enough of us trying something which leads to stable or a reduction then it’s very well worth it!! I like you have resisted HU since diagnosis (3 years) and whilst platelets are high, I feel have stabilised. So always be positive.
Like you, I resisted HU for about a year - platelets in the 600-800 range. Then I turned 60 and had a TIA, so HU and blood thinners, hello! Started HU in summer 2018 and have had no issues at all with it. If you do end up going that route, it will probably be fine, as is the case with most in this forum. And this is a great place to ask questions. It’s not a substitute for medical advice from your doctor but FAR better than Dr Google!
can you tell me what your TIA was like? I lost almost all of my hearing in my left ear for about 12 hours but next day I was fine. I had someone tell me that probably was a TIA and now I am concerned how to recognize them and when to go immediately to the doctor if detected,
I've had two, actually - about six months apart, the most recent a year ago. The first TIA caused kind of "flaring" at the edges of my vision, and an inability to remember certain very common words - lasted about an hour, then all was fine, and no residual damage. The second TIA also caused a bit of double vision and also some impairment of motion in my left hand and foot, and then severe nausea. Hospitalized myself at that point, had all kinds of tests done - also no residual damage. (That's the one that put me on the aspirin and clopidogrel to make sure my blood stays thin!) I don't know if a TIA can cause hearing loss, but I do know that if you think you had one you should definitely get in and see your doctor. Ideally they want to see you within 24 hours because that's when it's easiest to see if there has been any brain "activity", and also best for them to prevent an actual stroke - if there's going to be one. You may not have had a TIA, but I'd recommend popping in to see your doctor just as soon as possible.
Because interferon is a type of immunotherapy. It enhances your body’s immune response against bad cells. Several studies have shown that pegylated interferon may slow down progression of the disease, lower JAK2 allele burden % or even cause a complete molecular remission (in plain words, when disease in undetectable) in some patients.
The hydroxy chemo tablets, while they work to suppress the bone marrow from producing too many blood cells, have no such abilities.
Hi, platelets can differ 10% each time we have a blood test. My platelets did Iike you went uup to 970 but i was highly stressed. They did drop back down to 601. I am not taking Chemo drugs just aspirin daily. I keep well. I have had ET since diagnosis in 2015. I am 67 and still working full time shift work. Maybe if platelets go after 1 million I might consider chemo drug. I was told the most important thing is look after your cardio vascular health. Good luck on your decision. Lyn NZ.
Really? I am so scared about my condition I refused to have bone marrow test but my platelets continue to rise up. Despite the tests done like abdomen ultrasound, 2D echo,CT Scan all are negative no infections at all but the doctor diagnosed me as having essential thrombocytosis. Taking as of now clopidogrel and hydroxyurea.That brings my platelets count down to 518 as of this week. But afraid if it still goes up and up to 1000 .I am so nervouse since I am really afraid of getting stroke. And besides the meds makes me a bit anxious since it is chemo drugs and blood thinner that can both have side effects in the body. I am 35 years old working in the most stressful work like teaching children of a class 45-60 kids here in the Philippines makes me crazy all the time and makes stresses in life. Is this kind of work still fit in me or shall I look for another kind of work? Please advice me here...thank you very much...
Personally I'd be careful of putting off taking drugs to control this. I have Polycythemia, not ET, so I realize it may be quite different. But I know the risks of PV, if not controlled, can be serious.
I don't know that much about ET. I do know that the risks with PV are of stroke, heart attacks, embolisms. Given those risks, I feel like I have no choice but to go on the low level chemo. But maybe ET is different.
I’m also taking CBD oil and high doses of both bio-curcumin, Vit E with both Tocotrienol and Tocopherol forms and resveratrol. My platelets were steadily rising by 100-300 every 3mths since diagnosed with JAK2 ET about 2yrs ago. But since this new regime they’ve stopped rising, even dropped a bit. I’m hovering around 900. I’m also trying something that may be a bit controversial, so I won’t go into it until I see if this protocol does keep working. Like you, I’d like to avoid chemo.
Apart from this I’m only on aspirin and I have no symptoms whatsoever- still going to the gym 5x week.
SO good to hear what you are doing . I’ve seen well known integrative cancer practioner and see an Ayurvedic practioner regularly . I would SO be interested to know what you are trying as I’m open to anything natural .
Like you I’m just taking aspirin ( reluctantly ) !
I’ll definitely share what I’m doing if I continue to get positive results! I’m waiting to see what my next round of blood tests reveal in about 3mths.
Yes, it is a dilemma... I do agree completely... However, please DO keep in mind that consistently very high platelets can be a precursor to having a TIA, (Transient Ischemic Attack), or minor brain stroke...
Me? I have already had two (2) TIAs, and I am happy in that there are only very minor after-affects that today are barely discernible ... except other than by own recognition etc...
I would not recommend anyone tempting their fate too much... speaking from personal experience of course...
I am Post ET / MF, and after Three (3) years, my Ruxolitinib is no longer keeping my platelets low enough and recently I have had to start taking Methotrexate (MTX), an older chemo' drug that is often used in Lower Doses to manage Rheumatic Arthritis (RA), and... it works to also reduce platelets too...
After 7-8 months of my Platelets alternating between 900s-1M, (& NOT wanting another TIA), the MTX has been successful in bringing them back into the low 800s...
Importantly, please take note, if you start having bad Tinnitus & or lights in your periphery vision field you might well be on the boundary of a TIA event...?
...Because all of the above occurred with me prior to an attacks...
While I can completely understand your NOT wanting to take any Chemo'-based type drugs...
... There is one other really important option, and that is by maintaining an extremely healthy diet, (low inflammatory foods & substances), NO alcohol, no added sugar, whole plant & fruit based, staying in good shape, and having consistently regular exercise ... These types of regimes will also help to wash out the toxins... Just mineral water, (sparkling is fine of course)...
Thanks for your advice . Interestingly before diagnosis for about a couple of years I did have white lights in front of eyes every so often . Now gone completely for about 9 months
Been told a couple of small glasses of red wine can actually be good for me !!
Thank you for this info. I had many double visions before and some lights in the eyes and I never knew that it was already ready to get some brain stroke. I was so scared everytime I saw this lights in my eyes.
If you are under 65 and your platelets are under 1500 and you are otherwise healthy, symptom free and in particular, have no history of thrombotic events, then there is no reason why you have to start drug therapy. And even if you reach the age / platelet threshold it still only means the start of a conversation with your haem team. So if your haematologist is proposing to start treatment it’s important to find out why. The ‘purple toes’ may be giving rise to concern.
Platelets do fluctuate. What matters is the trend.
I really wouldn’t angst too much about Hydroxy. Yes it’s a cytoreductive drug but it’s chemo with a very small ‘c’. And it’s effective. It’s extremely well tolerated and the overwhelming majority of people (like me) experience no side effects whatsoever. It’s just like popping paracetamol. And quite honestly if you read the patient leaflet for paracetamol you probably wouldn’t take that either. You do need to be careful in the sun. But then, so does everybody, and this just gives you the impetus to be sensible and avoid sun damage.
I have PV Jak2+. I had a stroke in 2012 (I didn't know I had PV at the time) I 'dug my heels' in and refused Hydroxycarbamide for years, until the beginning of December when I caved and started taking it. And... so far, so good - although, I obviously don't know as yet whether it's working as I won't be seeing my Heam until tomorrow (30th Dec) The only side effect I have so far is that I'm a little more tired - it's not a debilitating fatigue though... and the plus side of this side effect is that I am sleeping like a log, better than I have for many years! Long may it continue, and fingers crossed that HU is actually working for me.
Hello ...I have jack 2 ... ET ... was diagnosed 2017 ... I tried all alternatives to chemo drug but nothing worked ,.. I was becoming more ill and for the first time... ,I looked really unwell ... so I tried chemo drug and to my amazement I started to feel much better .... my platelets are now below 5.... plus my Dr said instead of taking 3 times a week, I may be able to go lower , so am really pleased I took chemo drug .... sometimes chemo can be really helpful but I also remember how afraid I was to take it ...but now pleased I did .... hope you find what is helpful to you .... but hydra has really helped me .... best wishes to you ...
Platelets fluctuate all the time and blood counts aren’t 100% precise, so I’ve always disregarded anything less than 100 points either way unless it’s a rising or falling trend across several blood tests.
Unless you have any high risk factors (such as previous thrombosis, some other illnesses, age over 60 etc) you should be fine on aspirin only up to about 1,500.
I was on aspirin only for 12 years with counts between 800 and 1,000 - only started Pegasys when I had 3 tests over 1,100 and turned 60...
I have bee taking hydroxy for 7 years now, have et jack2+, no adverse effects and feeling very well. I do not worry about side effects, I drink a glass of wine when I feel like it and exercise regularly, walking 20 miles a week on average. I am 72 next month and believe in just getting on with my life and not worrying about diet or illness. Less stress all round.
The colour changes to your toes is Erythromelagia, MPN causes vascular disease. The only thing that will help with that is aspirin. I had ET for years before diagnosis so my toes are constantly purplish and sore. Some days it's difficult to walk due to pain. My consultant tells me they'll never improve, but won't get worse if I take aspirin. The Hydroxy was horrible for first few months. Now I feel so much better. Platelets down to 480, was 1589. I'd take the pills they do work. I'm on amitriptyline for MPN induced migraines. Had a brain scan in September, have 2 brain aneurysms, which I believe was caused by the thickened blood. If it can cause vascular disease in my feet, seems reasonable that it can damage small arteries in the brain. The only way to reduce risk of further damage is to take the hydroxy and aspirin. Good luck.
How about Pegasys? It’s not a chemo and can be very effective at reducing platelets. Worth a look and a discussion with your doctor. Also, keep in mind that Pegasys has the ability to stop or slow the progression of the disease. Good luck to you.
Hi, I was diagnosed ET JAK2+ 18 months ago and started on Hydroxy in August 2018 because of my age, 82 at the time. I appeared not to have too many side effects at first but because of abdominal aches and pains I decided to stop taking it in October this year having informed the Haematology nurse. My platelets seemed to remain fairly stable at around 400 till my last blood test when I saw the Haemo Dr. and that blood test she said had shown an increase to 600 in a fortnight! I was more or less shocked into taking my 500mg daily dose once again but since then have suffered bad stomach problems with diarrhoea so I have refrained from Hydrea for the few days over Christmas which I think has remedied the problem. I have an appointment with Haemo Dr on 16th January and may decide to take the chance without any drugs apart from Aspirin. We shall see. Quality of life is important especially at my advanced age! Hope you can decide your course of action, it's difficult I know. Regards, Fran
Fran, I love that you are 82 and doing well. I get a surge of energy when people in their 80's respond on this site. You are an inspiration! Good luck with figuring out a plan! xo
Here's the thing, everyone has different advice depending on their own experience. There is simply no right answer for everyone. I am 75+, was diagnosed last July, went on HU even though I didn't feel right about it. After a few weeks, had an incident with my eye which led to a CT of my head and neck and all claimed was unrelated to starting the HU but I felt strongly it had to be. I have learned in my years of living to listen to my intuition, so I, with agreement of specialist, went off of HU. Then he left town for months and I continued off it, but at the same time, did a LOT of research about complementary therapies including massive diet changes (lost 30 pounds on purpose), supplements etc. The best thing I did was to find an integrative oncologist who is a naturopath, and with whom I did genetic testing that showed how my body absorbs a variety of things so that I know what to eat and what to avoid, as well as which supplements I might need because, for instance, my body doesn't absorb. At their highest my platelets were under 600 and have been under 500, going as low as 250 at one point. I finally saw the specialist again last week after 4 months during which I went for blood tests every other week so could track platelets. I asked him how he felt about my going off all meds and much to my shock, he said, "Fine." While doing my research, I have found studies that say that high platelets raise the risk of thrombosis, but others that say they are found in people who have strokes, thrombosis and heart attacks, but that doesn't prove they are CAUSATIVE. So while they are indication that something is wrong, "clotting complicatons can occur in patients with a slightly elevated platelet count; there is no defnitive correlation between platelet number in the blood and risk of thrombosis." So my own choice is to continue to do everything in my power other than meds, but when meds become absolutely necessary, I will not refuse them. But the way, I have no other symptoms and no other medical conditions, but among other things I'm going to do is to see a cardiologist (this is my own idea), in order to be sure my heart is functioning well. Sorry this is so long, but it's a subject that is important. You will have to decide based on what feels right to you. There are positives and negatives to every path.
Thank you very much. I feel extremely fortunate to have no symptoms. My primary goal is to get my body in the best condition it can possibly be in assuming that down the road there will be more challenges with this disease
Hi, Photoshopuser. I have read what you say with interest and I agree that we have an instinct about our own bodies . I was interested in the research you did where you found somewhere that says high platelets are not necessarily correlated to risk of thrombosis and heart attacks . Could you let me know where I can find this article, if you can remember please. I have done a fair amount of research too and continue to do so and I'd be grateful to you and thanks for sharing what you have discovered. Glad to hear you are keeping well. Regards, Fran
Hi Fran, Here's one, I suggest if you are looking for more that you do as I did and google it. I have been doing so much research and I don't keep or print out everything, so trying to find can be hard other than googling. But this is a start. lls.org/sites/default/files...
Hi, sorry I haven't replied to you till now and I thank you very much for the interesting link you sent me. I've been busy with visitors over the last few days and have had a quick read of the article which I have saved and will digest as soon as I can. Much appreciate it. Thank you, Regards, Fran.
Platelets always fluctuate. Its part of the body processes. I didnt take any medication for about 10 years while platelets were in 1200-1400 range. Had muscle and bone pain all the time. started taking hydroxy when i started getting spleen cramps from enlarged spleen and fatigue becoming too much. Have been on Hydroxy for a year and feel better. Not so much pain. Fatigue lessened. And platelets around 300-400.
Hi Smomo, obviously it's a decision you need to make yourself. When I was switched to Hydroxycarbamide in 2003, I had concerns which I discussed with my consultant. He explained the drug has been used since the 1980s and is usually very well tolerated. I had some side effects, mainly a tendency to mouth ulcers which I could avoid by not eating acid foods like tomatoes and citrus fruits. My platelets were well controlled. Last July I was switched to Pegasys and my consultant is so far very pleased with my blood results. For me, Pegasys has more debilitating side effects than Hydroxycarbamide, but it's worth it for the improved results and its potential to slow progression. If I were you, I would have a talk with your consultant about all your concerns with medication.
Hi Smomo and welcome. I’m a hopper. I’ve always fluctuated 200 up, 200 down. Unfortunately, I jumped 300 up in August, then down and 350 up 2 weeks ago. I was careless with my supplements, which caused this. I took antioxidants much too close to my meds (Anagrelid) and I probably wiped it out of my system.
Nevertheless, some of us fluctuate, some don’t. Some need monthly controls and others biannually. I find stress jacks my thrombos up and also weather change: sudden heat, sudden cold. I’m sure there are many reasons. The more you monitor and find patterns, the more you’ll be at peace with your condition.
Hi Smomo, another thing that sends my thrombos soaring is papaya, sweet potato and since last summer a new culprit added to the list: sesame leaves also called perilla leaves. They contain tons of vit K. Also kale, broccoli, etc. I avoid these like the plague. The darker the salad leaves, the more vit. K. It’s like a fertilizer for the thrombocytes. Four haematologists told me that I can eat what ever I want as long as it’s a good balanced diet (whatever that is). My present haemotologist, is fabulous and knowledgeable beyond conventional medicine. She firmly believes that various foods influence illnesses and treatment, sometimes even strongly.
I’m on the autoimmune paleo diet. It has gotten rid of my 30year eczema problem, life long depression, brain fog, incontinence, bloating, histamine intolerance, and much more. I also have my strength back and sleep better. My dietician and I have adjusted the diet to fit my body. No one diet is for everyone. Important is to clear the body from gene manipulated foods, especially the horrific grains that exist today. The most inflammatory are wheat, rye,... least inflammatory are oats and rice, organic of course.
Grains: I only eat rice, a bit of oats and some buckwheat (which is actually not a grain). Other than that, organic meat directly from a fabulous farmer, my own caught fish, org. chicken and eggs.
I eat 6-10 servings of mainly veggies and fruit daily, especially root vegetables. As much organic as possible.
No sugar
No milk products, except some goat milk and yogurt, which is easy to digest and butter.
No chemicals, colouring, etc. In other words, if something is made and in a package, it doesn’t enter my home except 85% chocolate, which now tastes sweet!
Our energy source is lots of high quality fats: best greek olive oil (we go through a liter a week) good butter, coconut oil. When we start burning fats instead of sugar, we are rarely hungry and we also stop feeding the 100,000 cancer cells that run around in our bodies every day.
Legumes (lentils and co.) and white potatoes are not allowed on the autoimmune paleo diet, but I eat them since I know how to properly prepare them to get rid of the health hazards they carry.
Lentils and co. have lectins that are really difficult to digest. They must be soaked (bigger lentils, 3-4 hours, then precooked for 10 min. Rinsed and cooked normally)
Beans and chick peas soaked over night, precooked at least 25”. This destroys the lectins and there should be no more bloating or gas.
Red wine is allowed. No beer, strong alcohol.
Potatoes only boiled or smothered in olive oil and baked. Frying em activates their cancer causing properties.
I’m a great cook and have developed an amazing diet for myself and my whole family. Most of our friends have followed us on this diet. The Asians don’t generally eat
Grains (except rice) or milk products. that means half the world eats Paleo. It’s possible. I am Greek and of course Greeks eat lots of veggies, stews and oven meals. Very easy.
Only draw back is getting a quick bite to eat when you are running around. Everything readily available in our society are sandwiches and pasta.
I did the change cold turkey, healed my gut. I’ve taken lots of good supplements, intestinal bacteria to build my microbiom. CoQ10 for my mitochondria, 40,000 IUs od vitamin D weekly.
Hope to have helped you with my idea of the best diet. Clean, pure, low toxin, anti-inflammatory, organic.
I’m struggling with protein as I’ll only eat organic chicken and some fish . Didn’t eat any meat since 13 but realised pulses were making me bloated etc .
So I do ‘endulge’ every few days as can’t eat chicken fish every day . Feels weird as my natural choice is vegetarian.
Doing basically what you are .
Good to be able to have wine !
Have you tried fermented buckwheat bread ? It’s SO nice !!
I can imagine that buckwheat fermented would be great. I had buckwheat noodles in Korea and I make buckwheat pancakes at home. Delicious! I stay off the kefir (which I love) since I have a huge problem with milk products. Massive distension just 1/2 hour after consuming them. I make my own sauerkraut, salt pickles and kimchi for gut bacteria! So good to hear you are on the same plain. Regarding meat or no meat, Everyone is different and once we are in good diets, we start to really feel what’s good for us and not. Still, vegans and vegetarians must take great care to get enough B vitamins and Amino acids. They are a basic building stone of our methylation.
Why resist something that is proven to help? I have PV Jak2 + and I was placed immediately on Hydroxy 1000mg per day. The results were amazing. My symptoms diminished, didn’t go away completely, but I felt so much better. I had already had 3 DVTs in my one leg before being diagnosed. I am just happy that my chance of stroke or heart attack has been dramatically reduced. Better to have a pill than to tackle the results of these horrible conditions.
Thanks for response . I am reluctant because apart from a few toes that are a bit purple ( but have improved since soaking in warm water with mustard)
I have never had more energy and don’t have symptoms . It’s taken many years of hard work to feel this good and I’m reluctant to take things that lower my defences .
At the end of the day, it has to be your decision and any adverse effects of that decision are owned by you. Hydroxicarbamide does not always suppress the immune system. My partner takes it for ET JAK2+ and immuno-system has not been compromised in 2 years.
I second that. I have been on Hydroxy since 2015. I visit my elderly mum in her nursing home three times per week and there is no better place to pick up colds or chest infections. I have had no form of infection in nearly five years. I will say again, I will take Hydroxy Over heart attack/stroke anytime but we each have our own path to go in regards to treatment.
That’s good to hear . My Ayurvedic dr has said I might not react badly . I’m waiting a bit longer till it feels right to take meds . Then hopefully will do so positively!!!
It all depends on how strong our symptoms are and how each of us can cope with then. It also depends on risk factor. I have had 6 small TIAs at up to 823. And also, my thrombos jump up and down more than most. Others take a baby aspirin at 1300 and feel great. I do try to keep my intake of meds as low as possible. The long term effects do sneak up on us. Sometimes we don’t notice them, since they affect our bodies in different ways. l also make sure I know my body’s symptoms and warning signs well and practice self check. Cheers.
I know you’ve had a lot of replies but here are my thoughts. I was diagnosed with ET in 2008. I was having really bad headaches for a while and I went to my gp, who sent me for lab work. My platelets were a little under 600. He sent me to a hematologist who did a bmb and diagnosed me with ET. He immediately put me on Hydroxy. Soon after, my headaches went away and my platelets went into the 300’s. So I went off the medication on my own (not smart) and shortly after I ended up in going to the hospital in an ambulance and staying for 3 days. I had a blood clot in my spleen and my platelets were at 800. So my advice is to listen to the doctors but try to stay educated on side effects and the way the medications make you feel. Mine were adjusted many times over the years.
Good luck on this uncertain journey and let us know how you are doing.
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