My husband is diagnosed with this rare desease last february. He is also taking hydroxyurea,aspirin and pantoprezol.. Thank God for his second life.. Thank you for sharing this information on youtube for us to understand the desease so well..
Thank you so much, Doctor, for creating this video and sharing about your 94-year-old patient in one of the comments below. It truly gives me hope and motivates me to seriously consider my lifestyle choices. It would be wonderful if you could create a video that inspires hope through real stories, showcasing how patients responsibly manage their health. Thank you once again
Dr Kim. My husband was diagnosed with ET at age 33 (17 years ago) when he suffered portal vein thrombosis which extended to mesenteric and splenic vein thrombosis. Also small intestinal ischemia. I don’t know if he has any of the mutations. He’s been on various doses of hydroxiurea and warfarin, now on fragmin as it stopped working and he clotted again. He suffers from severe pain for 17 years now and is on high doses of opioids. Quality of life has been very low for 17 years and his condition goes against all the stats in your video, Have you ever seen such a sever case and is there any new treatment out there? He’s a rare case I believe and has survived so much. He should be in some kind of rare diseases book or something. If you know of anything that can help please reach out.
Just got diagnosed with ET. Thrombocytes around 600 at the moment. Therapy: low doses of Aspirin. What can I do for myself? I was quite a smoker and drinker. Probably those days are over. I know cigarettes are out of question, but what about beer? I will begin 12 hours fasting and more exercising. I hope healthy lifestyle can help with this crap. I am 48 years old. What is an average life expectancy with this disease? I read somewhere between 10 to 20 years. Is that right?
I had a 94-yr-old grandma whom I treated for 20-30 years with hydroxyurea. If you do well with your part such as living with healthy lifestyle, and with God’s blessing, your lifespan will be not different from your wife.
Can ET be differentiated from RT based on platelet profile? I.e. When PTC is high but PDW, MPV and P-LRC are all below the lower range. What is the significance of low PDW when PTC is tromocytosis range?
Greetings Doctor Kim. I am myself a Medicine resident. I wanted to know being at age of 28 unmarried. Platelets remains 17 lacs CALR gene positive with hydroxyurea. I wanted to know about taking Hydroxyurea at young age. About it's outcome. And regarding future pregnancy. You reply would be great ful.
Hydroxyurea can cause fetal anonmalies: shouldn’t take during pregnancy. Interferons are preferred. Hydroxyurea had been used for children with sickle cell anemia for many years.
It’s not uncommon to develop some fibrosis in the bone marrow of ET or PV. But it’s rare for ET or PV to progress to overt myelofibrosis. If you want to know more, please watch my lecture of myelofibrosis and look for the secondary myelofibrosis.
Dr. Kim do you know about the vaccine for covid causing clotting in the lungs and heart. I have ET and after the first set of shots I had severe lung pain and shortness of breath for 8 months and also heart pain. Thank you ❤
It is a controversial issue although there are many reports of blood clotting disease after COVID 19 vaccination. Regardless, if you have symptoms suspicious of blood clots, such as pulmonary embolism or DVT of extremities, you should be checked for those conditions.
Hello sir, I am also having this ET problem, What should i do plz tell me, i have done my biopsy and gene test, i have calr mutation in gene test and in biopsy I can’t understand so plz help me. Give ur mail id where i will send my reports to u!!Thanks
Hey SONAM I have also been diagnosed with CALR positive ET. Please can you discuss with me. How you were diagnosed? From where ate you taking medicine. Your Age? Is ot progressing without medication??
Thank you for all those informations My Sister was diagnosed with ET . She has 30 old years. But she hopes to get pregnant so dr refuses to give her adrea . She takes only acetylsalicylic acid 100mg/day. She has 1.9 millions platelets I want to know if this treatment is correct Thank you
My husband is diagnosed with this rare desease last february. He is also taking hydroxyurea,aspirin and pantoprezol.. Thank God for his second life.. Thank you for sharing this information on youtube for us to understand the desease so well..
Kamusta po mam asawa nyo? Ilan taon na po Siya ?
Thank you so much. This video was very useful to review my knowledge. Well explained.
Thank you so much, Doctor, for creating this video and sharing about your 94-year-old patient in one of the comments below. It truly gives me hope and motivates me to seriously consider my lifestyle choices. It would be wonderful if you could create a video that inspires hope through real stories, showcasing how patients responsibly manage their health. Thank you once again
Very precise and formative
Excellent video, thanks Dr Stanley.
I hope you do a follow up if anything changes in the research or treatment in relation to ET.
Informative...
Thank you for the in-depth explanation
Dr Kim. My husband was diagnosed with ET at age 33 (17 years ago) when he suffered portal vein thrombosis which extended to mesenteric and splenic vein thrombosis. Also small intestinal ischemia. I don’t know if he has any of the mutations. He’s been on various doses of hydroxiurea and warfarin, now on fragmin as it stopped working and he clotted again. He suffers from severe pain for 17 years now and is on high doses of opioids. Quality of life has been very low for 17 years and his condition goes against all the stats in your video, Have you ever seen such a sever case and is there any new treatment out there? He’s a rare case I believe and has survived so much. He should be in some kind of rare diseases book or something. If you know of anything that can help please reach out.
Just got diagnosed with ET. Thrombocytes around 600 at the moment. Therapy: low doses of Aspirin. What can I do for myself? I was quite a smoker and drinker. Probably those days are over. I know cigarettes are out of question, but what about beer? I will begin 12 hours fasting and more exercising. I hope healthy lifestyle can help with this crap. I am 48 years old. What is an average life expectancy with this disease? I read somewhere between 10 to 20 years. Is that right?
I had a 94-yr-old grandma whom I treated for 20-30 years with hydroxyurea. If you do well with your part such as living with healthy lifestyle, and with God’s blessing, your lifespan will be not different from your wife.
Can ET be differentiated from RT based on platelet profile? I.e. When PTC is high but PDW, MPV and P-LRC are all below the lower range. What is the significance of low PDW when PTC is tromocytosis range?
Can u advise me sir what the medicine for thyroid coz I have tyroid sir
Greetings Doctor Kim. I am myself a Medicine resident. I wanted to know being at age of 28 unmarried. Platelets remains 17 lacs CALR gene positive with hydroxyurea. I wanted to know about taking Hydroxyurea at young age. About it's outcome. And regarding future pregnancy. You reply would be great ful.
Hydroxyurea can cause fetal anonmalies: shouldn’t take during pregnancy. Interferons are preferred.
Hydroxyurea had been used for children with sickle cell anemia for many years.
Hi Dr Kim, can you explain what the slight increase of reticulin means?
It’s not uncommon to develop some fibrosis in the bone marrow of ET or PV. But it’s rare for ET or PV to progress to overt myelofibrosis. If you want to know more, please watch my lecture of myelofibrosis and look for the secondary myelofibrosis.
Dr. Kim do you know about the vaccine for covid causing clotting in the lungs and heart. I have ET and after the first set of shots I had severe lung pain and shortness of breath for 8 months and also heart pain. Thank you ❤
It is a controversial issue although there are many reports of blood clotting disease after COVID 19 vaccination.
Regardless, if you have symptoms suspicious of blood clots, such as pulmonary embolism or DVT of extremities, you should be checked for those conditions.
@@stanleykim1924 Thank you but none of those symptoms after 8 months from the vaccine.
Hello Dr. Stanley
Can i use ur info for my presentation?
im medical student undergraduate .
Thanks in advance
Yes, you may. But I would like to mention that the presentation slides were from Stanley Kim RUclips lecture. Good luck!
@@stanleykim1924 Definitely i will do that gladly , Thank you so much
Hello sir,
I am also having this ET problem,
What should i do plz tell me, i have done my biopsy and gene test, i have calr mutation in gene test and in biopsy I can’t understand so plz help me. Give ur mail id where i will send my reports to u!!Thanks
Hey SONAM
I have also been diagnosed with CALR positive ET. Please can you discuss with me. How you were diagnosed? From where ate you taking medicine. Your Age? Is ot progressing without medication??
Thank you for all those informations
My Sister was diagnosed with ET . She has 30 old years. But she hopes to get pregnant so dr refuses to give her adrea . She takes only acetylsalicylic acid 100mg/day.
She has 1.9 millions platelets
I want to know if this treatment is correct
Thank you
Hello,
I am also suffering with this problem!!hws ur sister now!!still having Hydroxyurea or any other medicine??