Diagnosed more than 20 years ago with MPD/ET Jak2 when research was still in its infancy and at that time there was no alternative to Hydroxyrea with its many side effects. MPD was 'upgraded' to MPN by the WHO and from then on I have been very grateful to the many MPN specialists and MPN Advocacy & Education International for answering questions which give cause for concern.
I watched one from three years ago last week and now this one. Both were very well done, informative without being inflammatory as sometimes happens with medical issues. I came out of both knowing what I can do myself to help and that’s important to me. Thank you.
1 am 42 and I have just been diagnosed with ET with a blood count of 934...now scheduled with a haemotologist to see if i need medication...i will have to make some blood work to monitor the blood count..but i must say as at now i lead a normal and occasionally get the common cold due to season change..am located in Vancouver,Canada
Wanted to comment since I have started exercising consistently over the last year and a half and changed my diet, reduced alcohol tremendously I don’t have many symptoms other than some fatigue every now and then. And even that I wonder if it’s a menopause factor or ET related. Oh, and lots of water.
Those are really great lifestyle changes! It can be hard to differentiate between symptoms and menopause since they present similarly. Look at some of our other videos from Dr. Couri and our 10th Annual Women's Conference to learn more about menopause and having an MPN.
Hello, thank you for this info.. I’ve been diagnosed 2 months ago but as i try to schedule with an hematologist/ oncologist don’t specialize in MPD? Can I ask where I can find an oncologist that specializes in ET? Thanks
We would be happy to help you find a specialist. Could you email Mallory Timm at timm@mpnadvocacy.com with where you are located so we can better help you. Thank you!
I am 56 and have been DX with ET, bone biopsy confirmed JK 2 positive. I have been started on hydroxuria. I am interested to be part of a study. Are of aware of any around the country.
My bf has been recently diagnosed with ET and im trying to support him as much as I can. He suffers from really severe fatigue and this is pretty much his the only symptom so far. He was put on interpheron. I'd like to know if his fatigue could improve once his platelets count goes down. I'd appreciate your answer 🙏
Ginger and turmeric are good to “thin” the blood but it’s hard to know how much to use. Sometimes I think I should experiment on myself. I have ET but my platelets stay around 550 and I’m on aspirin only.
Good day both i was diagnose in 2020 of ET from Massachusetts USA my oncologists treatment hydroxyroyea for rest of my life,My question is can i change or replace to enterperon from hydroxyorea im a low risk patient .because i speak up my oncologist about this and he said interperon have a lot of side effects.he doesn't recommend the interperon?according to my research interperon has none toxic rather than hydroxyorea.please help me about my questions thank so much i really appreciate.God bless.
Hi there! Thanks for your question! We are not medical professionals, but many MPN patients do well with interferon therapies, especially our younger ones. I would ask again about this.
I recommend switching to an MPN specialist in Massachusetts such as Dr Hobbs at MGH or Dr How over at Dana Farber. The old interferons (known as Intron) were used for CML and were given more frequently and at much higher doses than pegylated interferon used in MPN. Doctors who are not up to date on MPN treatment may be thinking of this older obsolete treatment when they tell you there's too many side effects.
The problem with plateletpheresis that it's very temporary. Due to the mutation, your bone marrow will quite rapidly replace the platelets that were removed. People get confused about this because phlebotomy is used for treating polycythemia Vera, so they think why not remove blood in ET? But in PV, the reason phlebotomy works is that it puts the person in an iron deficient state. Iron is needed to make red blood cells. Less iron, less red blood cells. Phlebotomy doesn't work in ET because the stem cell that makes red blood cells and platelets will "choose" to make more platelets when it detects iron stores are low. So removing whole blood eventually leads to reactive thrombocythemia (high platelets).
fruits and vegetables are not a good source of vitamins and minerals both by weight and because they have alot of anti-nutrients in them that bind vitamins and minerals up so they can not be used by the body and might even bind more vitamins and minerals from foods eaten with the vegetables too. if you want vitamins and minerals, egg yolks, liver and other animal organs are high in them and as long as you eat the organs in moderation then you will be fine. no limit on the eggs. this is why the doctor giving this advice is suffering from mild sarcopenia. you can see it in her shoulders which are close to 90 degree angles and the lack of muscle in her neck and cheeks making no longer full and her eye lid skin sag, as well as her neck skin no longer being fully filled out do to the muscle wasting that is sarcopenia. she is a doctor, she is NOT taught proper nutrition and nether are nutritionist for that matter because by law they have to follow the food pyramid. if i was that lady... the way she could fix all those problems i just mentioned would be to have at least 1 fatty steak a day, some buttery bacon and eggs in the morning and when she drinks. she also needs to start taking taurine powder, start at 2 grams and slowly move up to around 4gram daily until she has the right body condition and then stay at a 2 grams daily for the rest of her life because she is old enough to already having the ability to produce her own taurine be cut in half, and when she hits 65 she would be making almost no taurine so it is all derived from the diet after that... that's why you see so many old people with muscle wasting/sarcopenia and they are just bags of skin and bones, no muscle. I'm not even mad at this doctor, she was lied to just like the rest of us were. i'm sure she does well for her patients, she just needs to do a deep dive into ancel keys, and then explore animal based keto and carnivore diets.
Thank you ! As an ET patient from the UK I found this really informative, constructive and reassuring😀
Diagnosed more than 20 years ago with MPD/ET Jak2 when research was still in its infancy and at that time there was no alternative to Hydroxyrea with its many side effects. MPD was 'upgraded' to MPN by the WHO and from then on I have been very grateful to the many MPN specialists and MPN Advocacy & Education International for answering questions which give cause for concern.
Thank you for this!! This was incredibly helpful!
I watched one from three years ago last week and now this one. Both were very well done, informative without being inflammatory as sometimes happens with medical issues. I came out of both knowing what I can do myself to help and that’s important to me. Thank you.
1 am 42 and I have just been diagnosed with ET with a blood count of 934...now scheduled with a haemotologist to see if i need medication...i will have to make some blood work to monitor the blood count..but i must say as at now i lead a normal and occasionally get the common cold due to season change..am located in Vancouver,Canada
Thank you, this is really helpful guys.
Wanted to comment since I have started exercising consistently over the last year and a half and changed my diet, reduced alcohol tremendously I don’t have many symptoms other than some fatigue every now and then. And even that I wonder if it’s a menopause factor or ET related. Oh, and lots of water.
Those are really great lifestyle changes! It can be hard to differentiate between symptoms and menopause since they present similarly. Look at some of our other videos from Dr. Couri and our 10th Annual Women's Conference to learn more about menopause and having an MPN.
@ great, thank you!
I am diagnosed 8 years ago
Hello, thank you for this info.. I’ve been diagnosed 2 months ago but as i try to schedule with an hematologist/ oncologist don’t specialize in MPD? Can I ask where I can find an oncologist that specializes in ET? Thanks
We would be happy to help you find a specialist. Could you email Mallory Timm at timm@mpnadvocacy.com with where you are located so we can better help you. Thank you!
I am 56 and have been DX with ET, bone biopsy confirmed JK 2 positive. I have been started on hydroxuria.
I am interested to be part of a study. Are of aware of any around the country.
There is a website called clinicaltrials.gov where all research studies are listed. You can search for studies on the website
My bf has been recently diagnosed with ET and im trying to support him as much as I can.
He suffers from really severe fatigue and this is pretty much his the only symptom so far. He was put on interpheron. I'd like to know if his fatigue could improve once his platelets count goes down. I'd appreciate your answer 🙏
What to do to lower high platelets counts? Or what foods to eat is there any?
My questions too. Very little on diet when Hippocrates said 'Let food be thy medicine'. We gear so little about this when it's clearly a huge issue.
pubmed.ncbi.nlm.nih.gov/25463744/
Ginger and turmeric are good to “thin” the blood but it’s hard to know how much to use. Sometimes I think I should experiment on myself. I have ET but my platelets stay around 550 and I’m on aspirin only.
Good day both i was diagnose in 2020 of ET from Massachusetts USA my oncologists treatment hydroxyroyea for rest of my life,My question is can i change or replace to enterperon from hydroxyorea im a low risk patient .because i speak up my oncologist about this and he said interperon have a lot of side effects.he doesn't recommend the interperon?according to my research interperon has none toxic rather than hydroxyorea.please help me about my questions thank so much i really appreciate.God bless.
Hi there! Thanks for your question! We are not medical professionals, but many MPN patients do well with interferon therapies, especially our younger ones. I would ask again about this.
I recommend switching to an MPN specialist in Massachusetts such as Dr Hobbs at MGH or Dr How over at Dana Farber.
The old interferons (known as Intron) were used for CML and were given more frequently and at much higher doses than pegylated interferon used in MPN. Doctors who are not up to date on MPN treatment may be thinking of this older obsolete treatment when they tell you there's too many side effects.
Is plateletpheresis a treatment for ET?
The problem with plateletpheresis that it's very temporary. Due to the mutation, your bone marrow will quite rapidly replace the platelets that were removed. People get confused about this because phlebotomy is used for treating polycythemia Vera, so they think why not remove blood in ET? But in PV, the reason phlebotomy works is that it puts the person in an iron deficient state. Iron is needed to make red blood cells. Less iron, less red blood cells. Phlebotomy doesn't work in ET because the stem cell that makes red blood cells and platelets will "choose" to make more platelets when it detects iron stores are low. So removing whole blood eventually leads to reactive thrombocythemia (high platelets).
fruits and vegetables are not a good source of vitamins and minerals both by weight and because they have alot of anti-nutrients in them that bind vitamins and minerals up so they can not be used by the body and might even bind more vitamins and minerals from foods eaten with the vegetables too. if you want vitamins and minerals, egg yolks, liver and other animal organs are high in them and as long as you eat the organs in moderation then you will be fine. no limit on the eggs. this is why the doctor giving this advice is suffering from mild sarcopenia. you can see it in her shoulders which are close to 90 degree angles and the lack of muscle in her neck and cheeks making no longer full and her eye lid skin sag, as well as her neck skin no longer being fully filled out do to the muscle wasting that is sarcopenia. she is a doctor, she is NOT taught proper nutrition and nether are nutritionist for that matter because by law they have to follow the food pyramid. if i was that lady... the way she could fix all those problems i just mentioned would be to have at least 1 fatty steak a day, some buttery bacon and eggs in the morning and when she drinks. she also needs to start taking taurine powder, start at 2 grams and slowly move up to around 4gram daily until she has the right body condition and then stay at a 2 grams daily for the rest of her life because she is old enough to already having the ability to produce her own taurine be cut in half, and when she hits 65 she would be making almost no taurine so it is all derived from the diet after that... that's why you see so many old people with muscle wasting/sarcopenia and they are just bags of skin and bones, no muscle. I'm not even mad at this doctor, she was lied to just like the rest of us were. i'm sure she does well for her patients, she just needs to do a deep dive into ancel keys, and then explore animal based keto and carnivore diets.
I have ET