1. < Blood Cancers & Disorders

Essential Thrombocythemia: Making treatment decisions

Posted by mamsgirl1998 @mamsgirl1998, Jan 27 7:26pm

I have ET and was diagnosed 2 years ago. I am 50 Years old and my latest platelet count was 1,183,000. I only take a baby aspirin daily. My hematologist said I could try Hydroxyurea if I wanted. I am low risk and at first I didn’t want to take it. My platelet count continues to climb. I am thinking about trying the medication. Anyone else tried it? Any ill side effects?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Mentor
Lori, Volunteer Mentor | @loribmt | Feb 23 9:53am
In reply to @winmil99 "there is a naturopathic drug called "lumbrokinase " old Chinese medicine. I am going to start..." + (show)
@winmil99

there is a naturopathic drug called "lumbrokinase " old Chinese medicine. I am going to start on that and see what happens in a couple months..I have never started HD.. I am afraid of it as I actually know someone who had ET Jak2 (like me! ) He went on HD and 6 yr later died from AML! I think there is a black box warning on HD for AML ..It is rare to get, but it obviously happenes ..weird the only person I have ever known to have ET ended up dead from AML ..My Plts run 550-650..I have a recheck on 29th, if they are over 600, I will try lumbrokinase

Jump to this post

Hi @winmil99. Essential thrombocytopenia is part of a blood disorder group referred to as Myeloproliferative neoplasms (MPNs) which are potentially life-threatening blood cancers that happen when your bone marrow makes too many blood cells. It can be red or white cells or in your case it is too many platelets occurring from an acquired mutation to your JAK2 gene. Too many platelets can run the risk of strokes, pulmonary embolisms and DVT clotting and death. So it is nothing to take lightly if treatment is required.

The lumbrokinase or nattokinase are supplements which can thin blood and prevent clotting. However, if you have a mutation, this allows proliferation of cells due to the mutated gene. Just thinning the blood won’t stop the proliferation of the damaged cells. So that is something to consider. Some of these treatments can be lethal, cause very serious side effects or interfere with other medications. Most are not regulated or meet any specific standards of quality or potency.

I’m sorry for the loss of your friend to AML, but I wanted to clarify that just having ET can increase the potential of developing AML. It most likely wasn’t the HD that caused it in your friend.
HD has been around for decades and it has a proven track record for helping control blood conditions like ET and PV.
If you do end up requiring this drug, I hope that you’ll reconsider because it has been a lifeline to many people, helping them to live a long and healthy life.

I’m sure you’ve been doing your own research but thought I’d toss out another good article for you.
https://www.healthline.com/health/cancer/myeloproliferative-disorders
~~~
https://nattokinasehearthealth.com/lumbrokinase/benefits-and-side-effects/
In any event, your hematologist would be the best source of information regarding your platelet levels and to help you with the choice of medications. Have you discussed using an alternative medication for your ET?

REPLY
2 replies
niloufar | @niloufar | Feb 23 11:00am
In reply to @winmil99 "there is a naturopathic drug called "lumbrokinase " old Chinese medicine. I am going to start..." + (show)
@winmil99

there is a naturopathic drug called "lumbrokinase " old Chinese medicine. I am going to start on that and see what happens in a couple months..I have never started HD.. I am afraid of it as I actually know someone who had ET Jak2 (like me! ) He went on HD and 6 yr later died from AML! I think there is a black box warning on HD for AML ..It is rare to get, but it obviously happenes ..weird the only person I have ever known to have ET ended up dead from AML ..My Plts run 550-650..I have a recheck on 29th, if they are over 600, I will try lumbrokinase

Jump to this post

Thank you for your advise. My mom has heart disease and she is on blood thiner so they said it should be safe to postpone HD to the time that numbers raise up to 1 million. She is really fragile and by taking garlic and pomegranate her platelet level was plateaued. but right now since it's reaching to that number, I am pretty sure they gonna suggest to start HD which is so concerning for me due to the side effects. I am doing my best to find a way to keep her away from that chemo medicine since she already is taking a lot of medications. I really appreciate for you advise.

REPLY
niloufar | @niloufar | Feb 23 11:08am
In reply to @loribmt "Hi @winmil99. Essential thrombocytopenia is part of a blood disorder group referred to as Myeloproliferative neoplasms..." + (show)
@loribmt

Hi @winmil99. Essential thrombocytopenia is part of a blood disorder group referred to as Myeloproliferative neoplasms (MPNs) which are potentially life-threatening blood cancers that happen when your bone marrow makes too many blood cells. It can be red or white cells or in your case it is too many platelets occurring from an acquired mutation to your JAK2 gene. Too many platelets can run the risk of strokes, pulmonary embolisms and DVT clotting and death. So it is nothing to take lightly if treatment is required.

The lumbrokinase or nattokinase are supplements which can thin blood and prevent clotting. However, if you have a mutation, this allows proliferation of cells due to the mutated gene. Just thinning the blood won’t stop the proliferation of the damaged cells. So that is something to consider. Some of these treatments can be lethal, cause very serious side effects or interfere with other medications. Most are not regulated or meet any specific standards of quality or potency.

I’m sorry for the loss of your friend to AML, but I wanted to clarify that just having ET can increase the potential of developing AML. It most likely wasn’t the HD that caused it in your friend.
HD has been around for decades and it has a proven track record for helping control blood conditions like ET and PV.
If you do end up requiring this drug, I hope that you’ll reconsider because it has been a lifeline to many people, helping them to live a long and healthy life.

I’m sure you’ve been doing your own research but thought I’d toss out another good article for you.
https://www.healthline.com/health/cancer/myeloproliferative-disorders
~~~
https://nattokinasehearthealth.com/lumbrokinase/benefits-and-side-effects/
In any event, your hematologist would be the best source of information regarding your platelet levels and to help you with the choice of medications. Have you discussed using an alternative medication for your ET?

Jump to this post

Thank you so much for the information.

REPLY
memere09 | @memere09 | Feb 23 11:17am
In reply to @0612judy "Have been on hydroxyurea for 7 years. I cut my dose to half for the first..." + (show)
@0612judy

Have been on hydroxyurea for 7 years. I cut my dose to half for the first 5 years but then my platelets went up and up. I cut back occasionally with doctor guidance when my red and white cells dip too low but always need to go back on as my platelets shoot up again. Sorry.

Jump to this post

I most always take half the prescribed dosage. I cannot take the fatigue and absolute malais that I feel when I take 1000mg per day. I keep the count under 1 million. I drive my doctor crazy but for me it’s about the quality of life. I am 72 and have been taking hydrea since I turned 60. The only health risk factor I have is being over 60

REPLY
1 reply
sregiani | @sregiani | Feb 23 11:39am
In reply to @winmil99 "there is a naturopathic drug called "lumbrokinase " old Chinese medicine. I am going to start..." + (show)
@winmil99

there is a naturopathic drug called "lumbrokinase " old Chinese medicine. I am going to start on that and see what happens in a couple months..I have never started HD.. I am afraid of it as I actually know someone who had ET Jak2 (like me! ) He went on HD and 6 yr later died from AML! I think there is a black box warning on HD for AML ..It is rare to get, but it obviously happenes ..weird the only person I have ever known to have ET ended up dead from AML ..My Plts run 550-650..I have a recheck on 29th, if they are over 600, I will try lumbrokinase

Jump to this post

I take Nattokinese, and it was by the recommendation of my Heme doc. So far, I’m holding in the 600s w/only a baby aspirin.
As others have said, tell your MPN specialist about any supplements you’re interested in taking. I’m on quite a few, and it’s with his agreement.
Best wishes!

REPLY
2 replies
rola | @rola | Feb 23 12:20pm

Hi, new on this particular Mayo site and searching desperately for information. My 69yr old brother is experiencing tremendous cycyling of highs and lows of platelets. His blood work for the past year has extreme cycles of 17k one week then 2 weeks later 950k. He is under the care of a hemo/oncologist in NJ who is baffled. Nearly 48 yrs in practicecand & said he's never seen this before. He is not on any medication for this b/c they don't know how to treat it??? I am extremely worried and searching for answers . I would so appreciate if anyone has heard of this cyclical and extreme fluctuations in platelets.

Please help me find answers, so appreciate the Mayo connect, tysm.

REPLY
0612judy | @0612judy | Feb 23 2:53pm
In reply to @memere09 "I most always take half the prescribed dosage. I cannot take the fatigue and absolute malais..." + (show)
@memere09

I most always take half the prescribed dosage. I cannot take the fatigue and absolute malais that I feel when I take 1000mg per day. I keep the count under 1 million. I drive my doctor crazy but for me it’s about the quality of life. I am 72 and have been taking hydrea since I turned 60. The only health risk factor I have is being over 60

Jump to this post

I have never been on more than 500 mg of hydroxyurea. My doctor lets me cut the dose periodically if my white and red cell count goes too low.

REPLY
jroyer | @jroyer | Feb 23 9:52pm
In reply to @kik1 "Hello Wow your numbers are really high! I’m 55 will turn 56 next month. I started..." + (show)
@kik1

Hello
Wow your numbers are really high! I’m 55 will turn 56 next month. I started on Hydroxyurea once daily in and went from 842,000 to 510,000 from Nov 23 to Dec 23. I go back at the end of Feb 24. I’m curious to see where my count is currently. I had a rough time deciding to take it as well.
I do not like the medication, I’m already tired, now hot flashes, weight gain, with a little dizziness. At this point I’m dealing with medication, not blood clots or strokes. Research and ask questions! Here to the Best for all.
PS I’m curious about the COVID shots! I found out through routine blood test after 2 years of Covid shots! 🧐

Jump to this post

Same here… found Jak2 they routine physicals AFTER two years of Covid vaccines…

REPLY
jroyer | @jroyer | Feb 23 10:05pm

My numbers were around 900 when I started taking Hydroxyurea 500 mg/day in June 23 and numbers started dropping almost immediately. I’m around 550 now and taking 500mg 6 days per week. I have hot flashes (again; I am 71yo female) and my shins occasionally feel sunburned for short periods of time—like 5 mins.

REPLY
1 reply
nohrt4me | @nohrt4me | Feb 24 8:54am
In reply to @jroyer "My numbers were around 900 when I started taking Hydroxyurea 500 mg/day in June 23 and..." + (show)
@jroyer

My numbers were around 900 when I started taking Hydroxyurea 500 mg/day in June 23 and numbers started dropping almost immediately. I’m around 550 now and taking 500mg 6 days per week. I have hot flashes (again; I am 71yo female) and my shins occasionally feel sunburned for short periods of time—like 5 mins.

Jump to this post

My first inkling that something was wrong with me were the return of hot flashes 10 years after menopause. GP did umpteen endocrinology tests that were all normal. My hemo told me after ET diagnosis that the hot flashes and night sweats were part of the blood cancer landscape. I still get them occasionally since I started on the HU, but HU doesn't make them worse.

I also get the "sunburned shins" sensation, but no way was I going to report that one! I just slather on the CeraVe, and it eventually goes away. Thank you for posting yr experience. Makes me feel less nuts!

REPLY
View MoreView Less
Please sign in or register to post a reply.