Great job! Everybody views this as an elderly disease but I had these symptoms in childhood - by 5th grade your whole symptom chart was present. Although my symptoms were dismissed by parents and doctors your students know what to look for in themselves and their friends.
I have had ET since 2008. Since turning 40 (43 now) symptoms like night sweats, headaches, feeling sick, tiredness all the time have increased a lot. Was not on anything until now, just aspirin. Have noticed drs are taking more notice (they did before but even more so now) of symptoms. They say it's because I am older. Would not like to get to the stage of non chemo drugs so just take one day at a time but it is really hard emotionally and mentally as your life is totally different and that can be hard to accept. People don't see anything wrong with you and don't understand so I don't explain. There is no energy in me sometimes and can live to sleep and literally take each day as it comes, took a lot of getting used to because I have just done whatever I want.
Ask about anagrelide. There's a shortage recently because of increase in prescribing it and manufacturing regulations, but it is safer than hydroxyurea, is not a chemo agent, and works for many people, I was diagnosed 16 years ago from initial high CBC platelet count followed by 6 months of testing, then a confirmation with bone marrow biopsy (hurt like hell). I'm now 56. I had a TIA (stroke) when my medicine ran out for a week. Aspirin may not be enough. Ask about TX2B urine test, also. Don't let them pass you from pillar to post - research and follow up.
Since being diagnosed and treated for anaplastic large cell lymphoma, I've had raised platelets. So I'm in remission of NHL now but symptomatic (severe burning palm of the hands and feet) of ET. My hematologist has told me there's no such thing as triple negative ET but agrees with my high platelet count and symptoms, my body is behaving like I have a myeloproliferative disorder. I'm baffled to find out today that up to 15% of ET is triple negative.
I have ET with Myelofibrosis. Im a 34 year old Male and just started JAKAFI pills to HELP. SO far I still feel like shit ,but I'm praying something will give. Such a HELPFUL VIDEO.
pokermel night sweats, chills, headaches and tiredness every now and then. My platelet count is almost 1,000,000. That my biggest problem right now. Taking aspirin to avoid clots. I don't want to do oral chemo at this moment to lower them. Im young (30's) thats a long time on chemo pills and that can increase mu chances of Leukemia. Will see what happen eventually.
yucastrike I've had high platelets for at least 13 years but I was just finally diagnosed with ET this year. I'm 39. Up to about 9 months ago I was fairly asymptomatic. But recently I have experienced cyanotic tongue and lips and cyanotic fingers. And just in the past couple weeks..many headaches, visual symptoms that last all day and fatigue. I know myelobrosis may be waiting for me in the future and.. to be honest I am starting to get a bit freaked out with my symptoms.... I hope things start going better for you. The night sweats would be concerning for me.
I have ET. Platelet count = 1,250,000! I’ve had it for 5 years now. While I was radiation tx for breast ca. Will I ever get AML? I’m on Anagrelide 6 times a day. Tried Hydrea, side affects were horrific! Really bad. Thank you Dr. very informative! Subbed
At dx, I was 60 y/o, am now 66. I’m on Anagrelide. No hx of thrombosis. No hx of heart disease. Only my age. I feel fine for now. What are my chances of progression to MF? If I progress to leukemia, will it be Acute or Chronic? Thank you Dr.
@@jackiewilliams1920 The only side effects I've noticed over the years is a bit of fatigue. Also, if you take your medication doses too close together you can develop a severe headache similar to the very first time you take it. I'm sure there are other people who might have other experiences, but those two are the only ones I've noticed.
@@cybergogo1111 yes, I'm down from 1,000 000 per microliter to 350,000 .( normal range ) . I have blood tests done ( CBC TEST ) once a month now. I'm sorry it took me so long to get back to you I had a none evasive robotic heart bypass . I feel fine now!
I'v been on my med's for about 10 months now and my count is 250,000 and doctor visits every couple month now. HYDROXYUREA seems to be working for me. Now one pill per day and blood test every two months.
thank you for making this video. I have e.t. ...my on-site symptom was a stroke...followed by h.I.t. and when I told someone I have a platelet disorder called e.t. they said..."explain that" haha I can't even say the words...so I'm gonna show them this very well made and informative video.
I still don't get it what's the difference between E.T and PV :( Is it possible to have both? Mine is high RBC and platelet as well, but stll waiting for the complete blood test to come out.
PV also presents with an elevated white blood cell count (the polycythemia is broken down) as well as an elevated platelet count, but not red blood cells.
I have Essential Thrombocythemia, my red blood platelets reproduce too many red blood platelets per Micro Liter. I just tell people my blood is too thick.
Tharindu Udarajayarathna “Penia” means “not enough of” “Osis” means “condition of” So, if you have too many plates, its an “osis” because it’s a “condition of” too many platelets. “Osis” or condition of, is a chronic condition.
Great job! Everybody views this as an elderly disease but I had these symptoms in childhood - by 5th grade your whole symptom chart was present. Although my symptoms were dismissed by parents and doctors your students know what to look for in themselves and their friends.
I have had ET since 2008. Since turning 40 (43 now) symptoms like night sweats, headaches, feeling sick, tiredness all the time have increased a lot. Was not on anything until now, just aspirin. Have noticed drs are taking more notice (they did before but even more so now) of symptoms. They say it's because I am older. Would not like to get to the stage of non chemo drugs so just take one day at a time but it is really hard emotionally and mentally as your life is totally different and that can be hard to accept. People don't see anything wrong with you and don't understand so I don't explain. There is no energy in me sometimes and can live to sleep and literally take each day as it comes, took a lot of getting used to because I have just done whatever I want.
Ask about anagrelide. There's a shortage recently because of increase in prescribing it and manufacturing regulations, but it is safer than hydroxyurea, is not a chemo agent, and works for many people, I was diagnosed 16 years ago from initial high CBC platelet count followed by 6 months of testing, then a confirmation with bone marrow biopsy (hurt like hell). I'm now 56. I had a TIA (stroke) when my medicine ran out for a week. Aspirin may not be enough. Ask about TX2B urine test, also. Don't let them pass you from pillar to post - research and follow up.
@@hollyrivney3638 hello ...I also im on arangalide.....I was first diagnosed with ET....then I was told it progressed to P V .
@@michelleswift6819 that’s terrible
You need another BMB to check for progression first before starting a new med.
Thank you for raising awareness of this rare disease and explaining it well.
Really nice videos helped me alot in understanding chronic myeloproliferative disorders.
Great ! Merci beaucoup, this pretty much sums it up for me ; nice and clear, now I know better my affliction
Excellent teaching tool. High risk ET person, ( stroke in early 40’s , this is the clearest explanation I’ve had. ThankYou ✨🌞✨
My daddy was just diagnosed so I’m trying to learn all I can about it. I want to help him if there is anything I can do.
Since being diagnosed and treated for anaplastic large cell lymphoma, I've had raised platelets. So I'm in remission of NHL now but symptomatic (severe burning palm of the hands and feet) of ET. My hematologist has told me there's no such thing as triple negative ET but agrees with my high platelet count and symptoms, my body is behaving like I have a myeloproliferative disorder. I'm baffled to find out today that up to 15% of ET is triple negative.
Thank you for precise understanding
I have ET with Myelofibrosis. Im a 34 year old Male and just started JAKAFI pills to HELP. SO far I still feel like shit ,but I'm praying something will give. Such a HELPFUL VIDEO.
TKO Marquez how are you doing with the disease? I have it and I don't know what to expect.
FEAR_EATS_THE_SOUL good luck. I hope you are doing well...
yucastrike do you have any symptoms yet?
pokermel night sweats, chills, headaches and tiredness every now and then. My platelet count is almost 1,000,000. That my biggest problem right now. Taking aspirin to avoid clots. I don't want to do oral chemo at this moment to lower them. Im young (30's) thats a long time on chemo pills and that can increase mu chances of Leukemia. Will see what happen eventually.
yucastrike I've had high platelets for at least 13 years but I was just finally diagnosed with ET this year. I'm 39. Up to about 9 months ago I was fairly asymptomatic. But recently I have experienced cyanotic tongue and lips and cyanotic fingers. And just in the past couple weeks..many headaches, visual symptoms that last all day and fatigue.
I know myelobrosis may be waiting for me in the future and.. to be honest I am starting to get a bit freaked out with my symptoms....
I hope things start going better for you. The night sweats would be concerning for me.
Brilliant video, thank you
Is this hereditary? And are we any closer to a cure? Vickie G
I have ET. Platelet count = 1,250,000! I’ve had it for 5 years now. While I was radiation tx for breast ca. Will I ever get AML? I’m on Anagrelide 6 times a day. Tried Hydrea, side affects were horrific! Really bad. Thank you Dr. very informative! Subbed
At dx, I was 60 y/o, am now 66. I’m on Anagrelide. No hx of thrombosis. No hx of heart disease. Only my age. I feel fine for now. What are my chances of progression to MF? If I progress to leukemia, will it be Acute or Chronic?
Thank you Dr.
I did more research, it will be AML! Acute Myoloid Leukemia!!
@@jeanwarech4982 Are you still taking anagrelide 6 X daily? I take 0.5 q 8 hours, but I have ET. What has changed since going from a Dx of ET to AML?
Thank you!
Nicely explained. Be careful with Platelet pheresis tho.. It can actually cause the body to make more platelets in the long run.
You forgot one medication that is safer than hydroxyurea, developed at the Mayo Clinic, Agrylin, generic name anagrelide.
Like to know the side effects of this drug. Agrylin
@@jackiewilliams1920 The only side effects I've noticed over the years is a bit of fatigue. Also, if you take your medication doses too close together you can develop a severe headache similar to the very first time you take it. I'm sure there are other people who might have other experiences, but those two are the only ones I've noticed.
Such a good vlog!!! Keep it with more haematology diseases!!! Thank you! 🤓🤩
Muy claro, gracias!
I just got this diagnosis after bone marrow biopsy Thursday, I don’t think it’s very common. Mine is hemorrhagic type.
Mine too its calr+
This explains my speech problem :( my oncologist never told me half this info. My platelet count is 697
Marcos Santiago How are you doing now? My platelet count is 800 something. I'm getting a lot of tests done.
Victoria Garbarino I'm on that too, but I feel like it hasn't been helping.
@@nightowl4137@ReyJorgeJr Hi all, did the hydroxyurea helped to decrease the platelet count?
@@cybergogo1111 yes, I'm down from 1,000 000 per microliter to 350,000 .( normal range ) . I have blood tests done ( CBC TEST ) once a month now. I'm sorry it took me so long to get back to you I had a none evasive robotic heart bypass . I feel fine now!
I'v been on my med's for about 10 months now and my count is 250,000 and doctor visits every couple month now. HYDROXYUREA seems to be working for me. Now one pill per day and blood test every two months.
thank you for making this video. I have e.t. ...my on-site symptom was a stroke...followed by h.I.t. and when I told someone I have a platelet disorder called e.t. they said..."explain that" haha I can't even say the words...so I'm gonna show them this very well made and informative video.
I had a stroke as well. No long term residual effects from it, but I'm on hydroxyurea and plavix
@@nuclearstevex4516 I'm on Hydrea, Pavix and Xarelto. That's a lot but it's not Coumadin. I refuse to go back to Coumadin.
I still don't get it what's the difference between E.T and PV :( Is it possible to have both?
Mine is high RBC and platelet as well, but stll waiting for the complete blood test to come out.
PV also presents with an elevated white blood cell count (the polycythemia is broken down) as well as an elevated platelet count, but not red blood cells.
@@Jilly_Neutron Yes red blood cells and Hematocrit. Yes you can have both ET and PV
is it thrombocytosis or thrombocytopenia
Essential Thrombocythemia also called as Primary thrombocytosis.
Thank you :)
Now categorized as a Chronic Leukemia.
Is splenomegaly always present in this disorder?
I don't know if it's always present. My heamatologist examn my spleen every six months.
Niña Del Trópico no. I have had it for at least 13 years and just had an ultrasound of my spleen a couple weeks ago. My spleen is completely normal.
what does essential mean?
Opposite to reactive - Meaning there is a reason for the increase platelets, some other disease, rather than essential which is a mutation.
this is wrong emia mean low,cytosis mean high
"-penia" means low. Not thrombocyth*emia* .. "-cythemia" meaning it involves bloodcells.
is it thrombocytosis or thrombocytopenia
Neither. It is thrombocythemia - excess platelets
I have Essential Thrombocythemia, my red blood platelets reproduce too many red blood platelets per Micro Liter. I just tell people my blood is too thick.
Tharindu Udarajayarathna “Penia” means “not enough of”
“Osis” means “condition of”
So, if you have too many plates, its an “osis” because it’s a “condition of” too many platelets. “Osis” or condition of, is a chronic condition.