My name is Ryna, from Singapore . I need some information with regards to Essential Thrombocytosis.
1/3/2022 : I was diagnosed with ET .
Platelet Count : 548 , JAK2 positive .
My hematologies did not prescribe me with any medication as she told me I don’t need any medication for now . Will repeat the blood tests again on my next visit (after 6 months) . If needed will prescribe me with blood thinning medicine. My doctor told me it’s not a cancer but some information I read online written as blood cancer / luekemia
Please advise.
Is ET a cancer or leukemia ..
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Ryna-Ally
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Essential Thrombocythemia is a Myeloproliferative Neoplasm. The World health Organization reclassified the MPDs as MPNs in 2008. All of the MPNs are considered to be blood cancers. There is a risk that MPNs will progress into Acute Myeloid Leukemia, but the risk of ET progressing into AML is low. You will find the MPNs clustered together with the leukemias since MPNs are considered blood cancers.
The way many of us look at this is that ET is a cancer with a little "c" - not cancer with a big "C". The vast majority of people with ET will live a normal lifespan. You are more likely to die with ET than from it. There can be issues to deal with in managing ET. The secondary symptoms can be more bothersome than what is considered the primary risks of thrombosis and hemorrhage. At the core MPNs are inflammatory disorders. The deregulation of the JAK-STAT pathway causes our bodies to make too many inflammatory cytokines. This is thought to be responsible for many of the symptoms we experience. These symptoms can include fatigue, dizziness, burning/tingling in hands/feet, headaches, visual disturbances. insomnia, tinnitus, splenomegaly, and more.
MPNs are rare. Most hematologists lack experience dealing with them. Some are out-of-date regarding the current research and thinking on MPNs. Do note that some hematologists are aware that ET is classified as a blood cancer but do not like to look at it that way. They still prefer "disorder" to "neoplasm".
It is very helpful to have a MPN Specialist involved in your care team. According to this list, the closest MPN expert is in Kuala Lumpur, Malaysia. mpnforum.com/list-hem./
If you find someone who is a MPN Specialist closer, please be sure to add that doctor to this list.
The recommendation to just monitor at this point is the standard approach for low risk ET (based on age, other medical conditions and history of thrombosis/hemorrhage). Some hematologists recommend a low-dose aspirin as a precaution but not all do.
I believe there may be at least one other person from Singapore on the forum. Suggest checking the "Find people near me" function you will find in the "More" button on the upper right part of the MPN Voice screen. It can be very helpful to have someone local to share information and resources.
The doctors‘ list on the MPN Forum is incomplete. I live in Austria and only a few doctors are listed as MPN specialists, but there are many more here. As Hunter advised, please look for a specialist. It makes a big difference. Educate yourself, get on a good anti inflammatory diet (ie. Autoimmune Paleo), eat as clean as you can (organic), increase omega 3, take Curcuma supplements (reduce inflammation), keep you liver detoxed. There’s a lot you can do to help your overall health and see a natural doctor for this. Above all, sleep and rest well, stay happy and EXERCISE! Not to much. Moderate exercise is best. When I am stressed, the thrombocytes go up.
I was diagnosed at 909!!! No one recognized this for 8 years, despite all warning signs and biannual check ups! There’s a reason NOT to go to doctors that are friends. They see too much or nothing!
Best advice of all: stay on this Forum to get support, information and friendship support. We are a group of smart and loving blood brothers and sisters! 😁😉
Anag, thank you !!blessed to be here with all of you around ! Over here not many doctor wanted to elaborate more about ET . My biggest problem now is my daily headache. Joint paint too . You have any suggestions for this .
Not many doctors know much about ET and the other MPNs. Particularly about the secondary symptoms we experience.
I also experience the joint pain. While osteoarthritis happens for other reasons, the JAK2 mutation makes it worse. At the core, MPNs are inflammatory disorders. The JAk2 mutation causes our bodies to make too many inflammatory cytokines. I have significant issues due to systemic inflammation. the singe most effective thing I have used is Curcumin. It has made a huge difference. it is important to use a good quality Curcumin - one that is bioavailable. There are some supplements that are worthless. An anti-inflammatory diet can also be very helpful.
Regarding the headache - it depends on what kind of headache it is. Some microvascular headaches will resolve with low-dose aspirin since they are a microvascular issue. Migraines respond very well to CGRP-inhibitors. I use Ubrely to treat migraine episodes. It works great.
Your reply is very helpful . About the headache my neurologist wanted to shunt me for IIH . I don’t want to proceed with IIH
now because my LP level not that high . Daily having headaches and sound on the ears make me more stressful.
Curcumin can be easily found here . I can try out .
I will also go for second opinion soon because of the combo I’m having ET+ Mastocytosis. After Jak2+ I also wanted to get a clearer picture of its turn to systemic Mastocytosis.
I’m very thankful to be there .. I gain more knowledge about ET .
I would very definitely consult with a MPN Specialist about how JAK2+ ET can manifest as headaches before considering surgery for Idiopathic Intracranial Hypertension. I would also get a second opinion from another neurologist who can review your case. We had to do this analysis for my mother. This is the list of diagnostics for IIH (aka Normal Pressure Hydrocephalus).
1. Imaging tests. A CT scan or MRI of the head is done to look for enlarged ventricles in the brain.
2. Cerebrospinal fluid tests. These tests include a spinal tap and external lumbar drainage.
3. Gait analysis (walking). This is a timed walk test. ...
Baran surgery is a huge deal. I am speaking from personal experience with it. I got four neurology opinions before I went forward with it. Suggest a very thorough analysis that includes all of the elements listed above.
Dealing with a MPn can be very tricky since they can manifest in so many different ways. Please do whatever is necessary to consult with a MPN Specialist. BTW - if the "sound on ears" is a ringing (steady of pulsate) this is tinnitus - a common MPN symptom.
It is also very important to consult with a MPN Specialist about the cooccurrence of the JAK2+ET and mastocytosis. Here are a couple of articles that may help understand this.
Curcumin can be very helpful in dealing with the inflammation. it is important to find a bioavailable formulation. Curcumin (active ingredient in turmeric) does not pass readily into the bloodstream. it needs help to do so.
My apologies my English not so good ! I try my best to explanation .
1, 2 is done ✅! 3 & 4 not sure ..
The IIH diagnosis was done after my LP opening pressure at 21 .
That’s is when the doctor suggested for shunt . This happen after diagnosis of cutaneous Mastocytosis and BEFORE et was diagnose.
The shunt sound scary to me I’m reluctant to proceed with shunt . For this I’m taking acetazolamide . My eye side also blurry. Acetazolamide making my head more cramp and feeling tired . I stop it ..
Monday will have 1 day admission as my new hematologies wanted to do further test .
Hope this time I will find solution to stop my headache. This is my biggest problem for now .
No words to say ! Thank you so much for your support!
I’m no one .. not important person also ! Thank you for all of your concern . Brothers & Sisters! Thank you 🙏🏻
In this forum, everyone matters. That is what we are here for.
In dealing with the Progression of the ET to PV, having NF1 that caused a brain tumor/surgery, the arrhythmia/heart surgery, and two other surgeries all in the last several years one of the most important things I learned was how important it is to have a good support system. I have received a lot from this forum. I am sure you will too.
You have a lot going on. It is very important to have an integrated and collaborative treatment team. You often have to be the one to make the collaboration between the different specialists happen. Know that you can receive the care you need of you push to receive it.
Thanks Hunter, im clear now how serious this disease can be ! i have enough insurance coverage to back up all my medical expenses . Will get it check soon !
I have no more joint pain or headaches, no more histamine intolerance, eczema, body oder, mouth oder, bloating, fatty liver, digestion problems, tingly or numb fingers, breathing problems or nasal infections, which have plagued me my whole life. I got rid of most of these in 6 months to a year. My treatment was:Autoimmune Paleo diet
No grains except rice, no milk products, except goat/sheep great cheese
No sugar!
Very little night shade vegetables
What I do eat is 6-10 serving of vegetables a day, lots of organic olive oil, organic beef, lamb, fish and chicken, but no pork! Pork causes immune problems. For me, especially knee and joint pain, wherever I’ve had injuries in my life.
I take excellent quality vitamins and minerals every day. Vit C, magnesium, Zinc (not too much!!), some Selenium, CoQ10 100g (to help the mitochondria in our cells), Acetyl L-Carnitine (1000-1500mg daily for energy and brain support), sometimes 5mg melatonin to help sleep, but more to help brain detox! You can do this for a month, then pause, then again.
I make sure ALL my B vitamins are enough in my body.
I take 80,000 IUs of Vitamin D every week. This is so important. I try to stay at the level 70-90! This is so important.
The supplements that are antioxidant, I take far away from my Anagrelid (which reduces my thrombocytes), else the Anagrelide will be taken out of my body.
Please find a very good natural doctor, functional doctor, TCM or Bioresonance. All these doctors can guide you to keep your body as healthy as possible!
O yes.
Be careful with the following foods, they raise your thrombocytes!!
All foods high in Vitamin K, which works like a fertilizer for thrombocytes
Do not eat produced foods. They are full of additives and are make the body sick, fat, off balance and cause pain and immune reactions. Eat as much organic as possible!
I lost 23 Kg in 1.5 years and I eat much more than before. In other words, clean up your body.
Do light exercise. Don’t exhaust yourself.
Take frequent breaks when you need them not too late.
Do breathing exercises and do everything possible to make your life happy!! Bad Stress causes the thrombocytes to go up.
Pray, keep negative people away, pamper yourself, enjoy every day. Love, hug, share your time with good friends, relatives, and your animals if you have them.
Also, I don’t use ANY chemicals to clean our house, clothes, bodies, teeth. All natural! The difference is huge. I needed 1,5 years to put all these strategies in to place. It is SO worth it. My whole family and I are healthier and Much much happier.
Hope to have helped,
Anag 😁
The short answer is yes! Since 2008 MPNs have been designated as Cancers by the WHO.You will find much to interest and inform you on this site....
In your results it says "Faint band of 203 was detected.."
Did your Dr say that it is for sure the Jak2 mutation? Or is it not sure yet? "Faint" could leave room for uncertainty and further testing.
I've not seen "203" in my results report. I think my gene test may have used a different method. It could be that 203 is commonly faint with Jak2+ results. Please let us know what your Dr says.
If you confirm the mutation you should ask its % (allele burden) This is now standard practice in many clinics and will be important for your future MPN journey.
My 1st Dr also tried to avoid the word Cancer. But it's actually good for us, since cancer gets more attention and money for research than a "blood disorder". You can see discussions on the Voice of some of this current research.
Hematologies told they tested twice for the Jak2 mutation and they get the same positive results . I did not ask further because during that time I know nothing about this sicknesses and I did not ask much questions to her . My next appointment after 6 months 😞
Seems likely an accurate result if they checked twice. If you are able to contact them still, you can ask whether they checked your allele burden percent in these tests.
I also came across that one. I think 203 has something to do with size of the signal. It may be an older method. Interesting that none of us has sen it before.
Welcome to the site of knowledge. Do not panic! It’s controllable you are not going to die. You are going to live a long life!Yes it is a cancer. It used to be called a disorder but has been reclassified as a neoplasm ( cancer) because your platelets are being over produced.
At the moment your platelets are a little high so it depends on your age and medical history as and when treatment will start.
You are being monitored which is good.
Keep a record of all your blood test results and any query you have regarding treatment or symptoms will be answered here.
So sorry but I believe you have already been diagnosed. So yes you do. Your platelets are not alarming at this moment in time. The heamo’s don’t like you to be on drugs until necessary. I’ve been on drugs for 7 years. I was already retired. You may want to readjust your finances now to suit forthcoming needs. Ie you may suffer with fatigue and reduce your working schedule. We are all so different. Some people treat it like diabetes others to have symptoms. How old are you?
Wyebird, I’m 42 . Currently I’m having headaches almost every day . My knee , some kind of bone or joint pain .. I’m not sure . My eye sight getting blurry . Beside this ET , I was diagnosed with cutaneous Mastocytosis. Getting tired easily
Oh dear I feel for you, maybe you could be seen earlier. I was referred to a haematologist when my platelets were 500+ within 8 weeks they had risen to 800. Maybe you should go onto the mpnvoice.org website. Gather as much information as possible, contact and present the info your GP. Explain how ill you feel. Ask if you could have another blood test to check your platelets as you are concerned.Good luck
A high platelet result by itself is not a type of cancer, since many things can cause that. But the cause of the high PLT result (jak2 in your, and my, case) is the cancer. The mutated marrow cells are considered the cancer cells as I understand it.
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