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Essential Thrombocythemia: Making treatment decisions

Posted by mamsgirl1998 @mamsgirl1998, Jan 27, 2024

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?

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lynnevb | @lynnevb | 3 days ago
In reply to @eloise999 "@lynnevb do you have ET or have you progresssed to PV? Why does your doctor say..." + (show)
Profile picture for eloise999 @eloise999

@lynnevb do you have ET or have you progresssed to PV? Why does your doctor say you have similarities to Cal R patients? I am also TN and trying to understand what that means in terms of my future treatment options.

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@eloise999, I have ET. No progression so far. Similarities are that my platelets go super high when I am not on hydrea. For instance, before hydrea they were 1,800,000. What is TN?

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eloise999 | @eloise999 | 2 days ago

Triple negative. I do not know what my driver mutation is.

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lynnebgraham | @lynnebgraham | 1 day ago
In reply to @nohrt4me "@lynnebgraham Yes, any mysterious lumps that get bigger are always worrisome and involve needles. Like you,..." + (show)
Profile picture for nohrt4me (Jean) @nohrt4me

@lynnebgraham Yes, any mysterious lumps that get bigger are always worrisome and involve needles. Like you, my thyroid tests are always normal. I see the GP Nov 3, and the neck lumps are on my list.

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@nohrt4me
I got the results which said the nodules were benign. So thats good, only thing I asked my GP for a referal to a Thyroid specialist and that wont happen until early next year. I am so angry that my GP hadnt organised a referal for the specialist, when the first untrasound was done months ago., had to wait for me to ask, he is my doctor and should have done that. You really have to speak up for yourself these days. Good luck on Nov 3rd. Cheers Lynne

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nohrt4me (Jean) | @nohrt4me | 1 day ago
In reply to @lynnebgraham "@nohrt4me I got the results which said the nodules were benign. So thats good, only thing..." + (show)
Profile picture for lynnebgraham @lynnebgraham

@nohrt4me
I got the results which said the nodules were benign. So thats good, only thing I asked my GP for a referal to a Thyroid specialist and that wont happen until early next year. I am so angry that my GP hadnt organised a referal for the specialist, when the first untrasound was done months ago., had to wait for me to ask, he is my doctor and should have done that. You really have to speak up for yourself these days. Good luck on Nov 3rd. Cheers Lynne

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@lynnebgraham Great news! Glad you are seeing the specialist, tho. Yes, you do have to speak up. I am making my list for Nov 3. My GP retired, so I see the new person for the first time.

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hanya | @hanya | 1 day ago
In reply to @lynnebgraham "@nohrt4me I got the results which said the nodules were benign. So thats good, only thing..." + (show)
Profile picture for lynnebgraham @lynnebgraham

@nohrt4me
I got the results which said the nodules were benign. So thats good, only thing I asked my GP for a referal to a Thyroid specialist and that wont happen until early next year. I am so angry that my GP hadnt organised a referal for the specialist, when the first untrasound was done months ago., had to wait for me to ask, he is my doctor and should have done that. You really have to speak up for yourself these days. Good luck on Nov 3rd. Cheers Lynne

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@lynnebgraham
Oh dear friends ! Please do not stay silent when you know that something is not right!! If a doctor dismisses your diagnosis then you must go elsewhere!! Time is precious and you must advocate for yourself!! It could be a matter of life versus death!! I get so angry when I hear people who are ill are treated like it’s nothing !! You deserve better!! Every person here would tell you this!
I will look for more information about your situation and update!!
Hugs and encouragements

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lynnebgraham | @lynnebgraham | 1 day ago
In reply to @hanya "@lynnebgraham Oh dear friends ! Please do not stay silent when you know that something is..." + (show)
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@lynnebgraham
Oh dear friends ! Please do not stay silent when you know that something is not right!! If a doctor dismisses your diagnosis then you must go elsewhere!! Time is precious and you must advocate for yourself!! It could be a matter of life versus death!! I get so angry when I hear people who are ill are treated like it’s nothing !! You deserve better!! Every person here would tell you this!
I will look for more information about your situation and update!!
Hugs and encouragements

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Thank you so much for your concern. The medical profession should be aware of wait times, for specialist treatments. Using this information that the public would not be privy to, and be able to instigate an appointment in the beginning of treatment, in my case the nodules were not going to go away of their own accord and would need treatment or removal. Not a good time of the year to need any medical assistance. My specialist will be on leave for a month from middle Dec to end January, I just have to be patient and await their call. As I am an existing patient, and they have read all my tests etc, I am on a list for a cancellation if it comes up. Fingers crossed. In my state there isnt another specialist available to see.

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Colleen Young, Connect Director | @colleenyoung | 1 day ago
In reply to @jsmedsrud "I was diagnosed with ET around 2002 and it transitioned to myelofibrosis 10 years ago. I've..." + (show)
Profile picture for jsmedsrud @jsmedsrud

I was diagnosed with ET around 2002 and it transitioned to myelofibrosis 10 years ago. I've been on hydrea since 2002 with a brief stint on jakafi from a new onc and my Mayo onc said no way. Other than being tired and occasionally throwing up I still survive. I barely eat anything but I'm getting fat.

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@jsmedsrud, have you asked your Mayo team about your concern with unwanted weight gain? They may have suggestions.

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