Thank you for this Stephanie. I am 68 and in the Uk. Was diagnosed ET JAK2+ in January 2019 because of severe migraines. Whilst investigating the migraines it was found that my platelets were out of range (only in the 600s) but had been climbing for a long time. I was already on aspirin and on the day I was diagnosed I was immediately put onto Hydroxycarbamide to bring the platelets down. It would be wonderful if a therapy is found to help with the disease instead of just controlling the platelets. I am symptomatic but just do the best I can each day!
Excellent segment 1,2&3! I am a Stage 3b Triple neg BRCA in remission survivor since 2015. After 12 months of Aggressive treatments, with an activation of RA, Fibromyalgia & Microvascular Heart Disease all from hard Chemo, Radiation & surgery my experience have a similarity in my life down to my being an Military Nurse Vet. I spent over 30+yrs in Healthcare Administration, Specialty Care Mgmt & Patient Advocacy. Being on Permanent Disability from 2015, has been very much discouragement & decreased earning potential after working over 40+ years in healthcare….has been not so great. I applaud Mary being able to continue to work & keep her large earning potential. My my 6-figure per annum ability ended in 2015. Aside from this I have enjoyed work in the area as a Clergy person & Volunteer Community & Health care advocate. Thanks for this segment & allowing me to voice my own similarities as in Mary’s from onset to now. Rev. Ro
My husband is ET JAK2 and is turning 60 soon. While diagnosed six years ago, he's had high platelets going as far back as he had CBC results broken down on his labs (in the late 90s) - so he's likely had ET for 25 years or more (the doctors always just dismissed his self reported vague symptoms and high platelets). All his RBC, WBC, HgB and HCT have been stable in the normal range (although his HgB is in the higher end of normal and always has been back to high school). His platelets average around 450,000 with a high of only 525,000 on one occasion. His lowest was 401,000. He knows the standard of care requires him to go on HU soon but he really doesnt want to because he is concerned about increasing his rate of progression and of course any new and likely worse symptoms. He has exercised one, two or three times a day since he was in high school and still does (walking, biking, gym etc). His symptom burden is high on fatigue and his legs hurt after lengthy periods of sitting and as always, occasional night sweats, itching and hands that fall asleep if he sleeps on them - otherwise normal. Arthritis is giving him a limp now but his exercise makes his day feel better all around. He's aware of the potential for clots, bleeds and all the risk associated with them but also sees a risk with the sudden application of a toxic drug that may give him worse symptoms. And many people who take HU only get their platelets lowered to where his are already naturally. Will he get a vote in this or will the doctors mandate it in order for him to access other care? And is it typical for relatively indolent ET patients to go on HU without history of clots etc with platelets only in the 400K's?
I really sympathise with you, I'm in a similar position. It's so difficult it feels as if they're playing Russian Roulette with our lives and age 60 is a golden number. My platlets are 1086 and I have high BP, I'm 55 been told will not start treatment until my platelets reach around 1350 mark or I turn 60. I worry about getting blood clots even though I take aspirin. treatment has so many side effects so I understand where you're coming from. IF my platlets where as low as 550 and I had minor symptoms with ET I definitely wouldn't start treat. seems like they just want to start treatment with your hubby just because he's turning 60 and they are just following protocol.
@@truthbtoldwright6411 I know! It just seems so arbitrary. One day you better not, then the next day, because it's your birthday, you absolutely must. It doesn't add up regardless of which side you look at it. I suspect he will not elect to do so right away. He is reluctant to take medications now if he doesn't see the logic. Thanks for the note and I wish you the very best of health.
My friend had a stroke at 32 (in 2004) from essential thrombocythemia - the stroke was his first sign that he had a platelet disorder. He has the JAK2V617 gene mutation. He is now legally blind from the stroke. He takes hydroxy urea for the ET. At age 30, he was diagnosed with Type 1 diabetes. He continues to be active - swimming competitively, is a high school math teacher, and takes nutrition seriously. Unfortunately he is deficient is so many hormones and suffers from depression which he believes to be unrelated to typical Type 1 fatigue and the visual impairment issues. I have been researching for a few years endocrinologists, psychiatrists, and studies that address these hormone issues. I still haven’t found a strong connection between these issues and either his ET or his Type1. I have reached out to many authors of studies and physicians but have heard nothing. I would be so grateful for any recommendations you have.
Dawn, thank you for sharing about your friend. I am so glad that he is still living his active lifestyle in spite of the ET and diabetes. We are looking to do a live program to help with questions like this, getting them in front of an MPN specialist. Will post about it on our social media channels. -Stephanie
I live in the UK and was diagnosed with ET in September 2021. I currently take low dose aspirin. End of December/beginning of January I started taking high dose vitamin D with K2. Between blood tests taken at the end of December and end of March my platelet count dropped from 569 to 498. I'm curious to see how my platelet count will be when I have my blood tests in July/August. I also found some studies relating to ET and and vitamin D which showed it reduced platelets. I'm also curious as to why more research isn't done around supplements and diets and their positive effects as much as drug trials.
@@nicoled9814 Hi, I take a combined capsule of Vitamin D3 10,000iu and Vitamin K2 438mcg. I understand it's better to take the D3 combined with K2. I'm also going to look at potentially reducing the dosage of D3 once we've finished these capsules and also look at taking a magnesium supplement and/or Vitamin A. They're all meant to be beneficial and work really well together, it's just knowing what doses to take them all in. Hope that helps 😊
Thanks for your information. I appreciate ur reply. Pls update me your blood test this July/ August if your platelet count has been lowered. I hope we can find a better and natural remedy rather taking medication prescribed by a physician, I am concern about the long term side effects. Hopefully this will work. Praying for you.
For more than a year since i’ve been found with ET my platelets count kept bouncing up and down in between FBC tests. 873, 932, 865, 967, 898, 955, 1106 (in this exact order), and now 1162. I made no changes in my diet, I was/am as active as per usual. 29 yo of age, living in the UK. If your next count will bounce up again, don’t be scared, it’s something normal. Good luck with your next test, and let us know how it went. Sincerely waiting for good results.
@@iPeeCoffee Hi iPee, my platlets count is 1089 I'm on aspirin only. My hematologist said they won't treat me until my platelets reach 1350, I also have high BP. Have been told not to worry because I'm 55 and was told I will not need treatment until I'm 60. Just want to know how high is too high for platelets to clot even whilst taking baby aspirin, any advice? Thanks
This is fascinating to me. Hydroxurea has been minimally effective (and it wasn't until I got off IVIG that it began to really show a difference). I was accused (repeatedly) of not taking my medication because "it is impossible to fail hydroxurea. It has no side effects and it helps everyone with ET." Just hearing studies being done on a treatment for failed hydroxurea is mind boggling to me.
She also told me there are no symptoms of the disease so she couldn't figure out why I was so uncomfortable. (Add ineffective treatment with being unable to take meds to control my Myasthenia Gravis - due to contraindication with Hydroxurea) - I'm not sure why I didn't realize how unfortunate my care was.
I have had ET for over 6 years now. This week my doctor is changing me from HydroxyUrea to Pegasus. What side effects should I be aware of? I have had my thyroid removed due to cancer, I have stage 3a kidney disease, very high BP for which I take several meds, asthma, and I will be 80 in a few months. I do take baby aspirin daily.
Please don’t take Pegasus, I have had it, and my doctor had to stop it after 6 weeks. I suffered from every single side effect anyone could imagine. Read a lot and at the end of the day, they can’t force you to take it
I have was diagnosed with ET 12 months ago and are receiving medication, my confusion is around the word cancer, my consultant states I do not have cancer, however, many sites states ET is cancer, so do I have cancer ??
So glad Joy was able to help answer your question. I'd love to talk to you both... if you're up for it, please send me a message at stephanie@thepatientstory.com. Thank you!
Hello I got ET in September of last year and was on hydroxycarbamide but it didn't work my platelets were 1500 but were coming down slowly .then I was put on pegasys interferon injections 💉 now my platelets count is 460. my red blood cells are at 85 . Feeling normal with the injections 💉 no side affects .
Need help please... My mother has polycythemia Vera she was diagnosed in 2012 she has Jak 2 mutation. her knee replacement surgery is possible yes or not plz relpy
Yes, it is. This is direct from the UK blood cancer website: "Myeloproliferative neoplasms (MPNs) are a group of different blood cancers. The three main types are polycythaemia vera (PV), essential thrombocythaemia (ET) and myelofibrosis." Hope that helps!
@@vanessapitt1809 hi there. I am 27 years old 7 months ago diagnosed with ET. I wanted to know how old are you? What is your current platelets count? Mine is increasing even after taking hydroxyurea
@Aishwarya Mehta Hi, I am 42 years old. I was diagnosed age 41 in September 2021. My platelet count was high 500s. Right now, because I am pregnant and have increased blood flow, my platelet count is very low, about 223 as of last week. My baby is due in the next 4 to 6 weeks, so will have my next blood test post pregnancy in June and be able to see whether it has gone up again. I was only taking 75mg of aspirin before my pregnancy and will go back to this dose post pregnancy. Depending if the platelet count goes up again, I will try taking Vitamin D with K2 again, too, to see if this brings it back down.
@@vanessapitt1809 normal platelet count is 150-450,000. So, you are reading normal now with pregnancy, probably because the increase blood 🩸 volume has your count diluted. My highest count has been 700’s but I’ve seen some people with a million. Immediately started on baby aspirin. I tried hydoxyurea but was too nauseous even with zofran. Now, I’m trying Jakafi which isn’t normally used for ET. Typically PV or PF, which I’ve probably advanced to. Been on 1 month and seems to be helping my symptoms
![Jack Harlow - Hello Miss Johnson [Official Music Video]](http://i.ytimg.com/vi/Q86_nlRoIGw/mqdefault.jpg)
Thank you for this Stephanie. I am 68 and in the Uk. Was diagnosed ET JAK2+ in January 2019 because of severe migraines. Whilst investigating the migraines it was found that my platelets were out of range (only in the 600s) but had been climbing for a long time. I was already on aspirin and on the day I was diagnosed I was immediately put onto Hydroxycarbamide to bring the platelets down. It would be wonderful if a therapy is found to help with the disease instead of just controlling the platelets. I am symptomatic but just do the best I can each day!
Excellent segment 1,2&3! I am a Stage 3b Triple neg BRCA in remission survivor since 2015. After 12 months of Aggressive treatments, with an activation of RA, Fibromyalgia & Microvascular Heart Disease all from hard Chemo, Radiation & surgery my experience have a similarity in my life down to my being an Military Nurse Vet. I spent over 30+yrs in Healthcare Administration, Specialty Care Mgmt & Patient Advocacy. Being on Permanent Disability from 2015, has been very much discouragement & decreased earning potential after working over 40+ years in healthcare….has been not so great. I applaud Mary being able to continue to work & keep her large earning potential. My my 6-figure per annum ability ended in 2015. Aside from this I have enjoyed work in the area as a Clergy person & Volunteer Community & Health care advocate. Thanks for this segment & allowing me to voice my own similarities as in Mary’s from onset to now. Rev. Ro
My husband is ET JAK2 and is turning 60 soon. While diagnosed six years ago, he's had high platelets going as far back as he had CBC results broken down on his labs (in the late 90s) - so he's likely had ET for 25 years or more (the doctors always just dismissed his self reported vague symptoms and high platelets). All his RBC, WBC, HgB and HCT have been stable in the normal range (although his HgB is in the higher end of normal and always has been back to high school). His platelets average around 450,000 with a high of only 525,000 on one occasion. His lowest was 401,000. He knows the standard of care requires him to go on HU soon but he really doesnt want to because he is concerned about increasing his rate of progression and of course any new and likely worse symptoms. He has exercised one, two or three times a day since he was in high school and still does (walking, biking, gym etc). His symptom burden is high on fatigue and his legs hurt after lengthy periods of sitting and as always, occasional night sweats, itching and hands that fall asleep if he sleeps on them - otherwise normal. Arthritis is giving him a limp now but his exercise makes his day feel better all around. He's aware of the potential for clots, bleeds and all the risk associated with them but also sees a risk with the sudden application of a toxic drug that may give him worse symptoms. And many people who take HU only get their platelets lowered to where his are already naturally. Will he get a vote in this or will the doctors mandate it in order for him to access other care? And is it typical for relatively indolent ET patients to go on HU without history of clots etc with platelets only in the 400K's?
I really sympathise with you, I'm in a similar position. It's so difficult it feels as if they're playing Russian Roulette with our lives and age 60 is a golden number. My platlets are 1086 and I have high BP, I'm 55 been told will not start treatment until my platelets reach around 1350 mark or I turn 60. I worry about getting blood clots even though I take aspirin. treatment has so many side effects so I understand where you're coming from. IF my platlets where as low as 550 and I had minor symptoms with ET I definitely wouldn't start treat. seems like they just want to start treatment with your hubby just because he's turning 60 and they are just following protocol.
@@truthbtoldwright6411 I know! It just seems so arbitrary. One day you better not, then the next day, because it's your birthday, you absolutely must. It doesn't add up regardless of which side you look at it. I suspect he will not elect to do so right away. He is reluctant to take medications now if he doesn't see the logic. Thanks for the note and I wish you the very best of health.
@@deidrabrey4043 thank you 2
Have you heard of a new drug callef ruxla. ( not sure of spelling, Have you joined VOICES of MPN?? Good info. Tracking via phone or I pad. Computer
@@dawnladuca7938 yes his Dr talked about it. Jakafi if its the same one is a possibility for him.
My friend had a stroke at 32 (in 2004) from essential thrombocythemia - the stroke was his first sign that he had a platelet disorder. He has the JAK2V617 gene mutation. He is now legally blind from the stroke. He takes hydroxy urea for the ET. At age 30, he was diagnosed with Type 1 diabetes. He continues to be active - swimming competitively, is a high school math teacher, and takes nutrition seriously. Unfortunately he is deficient is so many hormones and suffers from depression which he believes to be unrelated to typical Type 1 fatigue and the visual impairment issues. I have been researching for a few years endocrinologists, psychiatrists, and studies that address these hormone issues. I still haven’t found a strong connection between these issues and either his ET or his Type1. I have reached out to many authors of studies and physicians but have heard nothing. I would be so grateful for any recommendations you have.
Dawn, thank you for sharing about your friend. I am so glad that he is still living his active lifestyle in spite of the ET and diabetes. We are looking to do a live program to help with questions like this, getting them in front of an MPN specialist. Will post about it on our social media channels. -Stephanie
I live in the UK and was diagnosed with ET in September 2021. I currently take low dose aspirin. End of December/beginning of January I started taking high dose vitamin D with K2. Between blood tests taken at the end of December and end of March my platelet count dropped from 569 to 498. I'm curious to see how my platelet count will be when I have my blood tests in July/August. I also found some studies relating to ET and and vitamin D which showed it reduced platelets. I'm also curious as to why more research isn't done around supplements and diets and their positive effects as much as drug trials.
hi may i know what is your dosage of vit.d and K2? thank you
@@nicoled9814 Hi, I take a combined capsule of Vitamin D3 10,000iu and Vitamin K2 438mcg. I understand it's better to take the D3 combined with K2. I'm also going to look at potentially reducing the dosage of D3 once we've finished these capsules and also look at taking a magnesium supplement and/or Vitamin A. They're all meant to be beneficial and work really well together, it's just knowing what doses to take them all in. Hope that helps 😊
Thanks for your information. I appreciate ur reply. Pls update me your blood test this July/ August if your platelet count has been lowered. I hope we can find a better and natural remedy rather taking medication prescribed by a physician, I am concern about the long term side effects. Hopefully this will work. Praying for you.
For more than a year since i’ve been found with ET my platelets count kept bouncing up and down in between FBC tests. 873, 932, 865, 967, 898, 955, 1106 (in this exact order), and now 1162. I made no changes in my diet, I was/am as active as per usual. 29 yo of age, living in the UK. If your next count will bounce up again, don’t be scared, it’s something normal. Good luck with your next test, and let us know how it went. Sincerely waiting for good results.
@@iPeeCoffee Hi iPee, my platlets count is 1089 I'm on aspirin only. My hematologist said they won't treat me until my platelets reach 1350, I also have high BP. Have been told not to worry because I'm 55 and was told I will not need treatment until I'm 60. Just want to know how high is too high for platelets to clot even whilst taking baby aspirin, any advice? Thanks
Diagnosed with ET and on Hydrox. My question can I take it once weekly to reduce high platelets? I guess I’ll know when I go for my next lab work..
This is fascinating to me. Hydroxurea has been minimally effective (and it wasn't until I got off IVIG that it began to really show a difference). I was accused (repeatedly) of not taking my medication because "it is impossible to fail hydroxurea. It has no side effects and it helps everyone with ET."
Just hearing studies being done on a treatment for failed hydroxurea is mind boggling to me.
She also told me there are no symptoms of the disease so she couldn't figure out why I was so uncomfortable. (Add ineffective treatment with being unable to take meds to control my Myasthenia Gravis - due to contraindication with Hydroxurea) - I'm not sure why I didn't realize how unfortunate my care was.
I had such severe complications from hydroxyurea that I probably would be dead if I stayed on it
I have had ET for over 6 years now. This week my doctor is changing me from HydroxyUrea to Pegasus. What side effects should I be aware of?
I have had my thyroid removed due to cancer, I have stage 3a kidney disease, very high BP for which I take several meds, asthma, and I will be 80 in a few months. I do take baby aspirin daily.
Please don’t take Pegasus, I have had it, and my doctor had to stop it after 6 weeks. I suffered from every single side effect anyone could imagine. Read a lot and at the end of the day, they can’t force you to take it
Can you live a normal life with essential thrombocytosis?
I have was diagnosed with ET 12 months ago and are receiving medication, my confusion is around the word cancer, my consultant states I do not have cancer, however, many sites states ET is cancer, so do I have cancer ??
ET is a slow progressing blood cancer. Most patients with ET have a normal lifespan
I'm 25 and have suspected ET. Having a bone marrow biopsy in 2 weeks
@@JoyJoyJ0yJoyJ0y Thanks Joy
So glad Joy was able to help answer your question. I'd love to talk to you both... if you're up for it, please send me a message at stephanie@thepatientstory.com. Thank you!
Hello I got ET in September of last year and was on hydroxycarbamide but it didn't work my platelets were 1500 but were coming down slowly .then I was put on pegasys interferon injections 💉 now my platelets count is 460. my red blood cells are at 85 . Feeling normal with the injections 💉 no side affects .
Need help please... My mother has polycythemia Vera she was diagnosed in 2012 she has Jak 2 mutation. her knee replacement surgery is possible yes or not plz relpy
Is ET a rare type of blood cancer?
Yes, it is. This is direct from the UK blood cancer website:
"Myeloproliferative neoplasms (MPNs) are a group of different blood cancers. The three main types are polycythaemia vera (PV), essential thrombocythaemia (ET) and myelofibrosis."
Hope that helps!
Yes. That’s why they don’t have much info. I believe last numbers were 300k cases. Or 0.08% population. Plus many go undiagnosed
@@vanessapitt1809 hi there. I am 27 years old 7 months ago diagnosed with ET. I wanted to know how old are you? What is your current platelets count? Mine is increasing even after taking hydroxyurea
@Aishwarya Mehta Hi, I am 42 years old. I was diagnosed age 41 in September 2021. My platelet count was high 500s. Right now, because I am pregnant and have increased blood flow, my platelet count is very low, about 223 as of last week. My baby is due in the next 4 to 6 weeks, so will have my next blood test post pregnancy in June and be able to see whether it has gone up again.
I was only taking 75mg of aspirin before my pregnancy and will go back to this dose post pregnancy. Depending if the platelet count goes up again, I will try taking Vitamin D with K2 again, too, to see if this brings it back down.
@@vanessapitt1809 normal platelet count is 150-450,000. So, you are reading normal now with pregnancy, probably because the increase blood 🩸 volume has your count diluted. My highest count has been 700’s but I’ve seen some people with a million. Immediately started on baby aspirin. I tried hydoxyurea but was too nauseous even with zofran. Now, I’m trying Jakafi which isn’t normally used for ET. Typically PV or PF, which I’ve probably advanced to. Been on 1 month and seems to be helping my symptoms