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.
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 🙏
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!
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.
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.
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).
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.
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.
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 🙏
Thank you, this is really helpful guys.
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!
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.
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/
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
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).