Essential Thrombocythemia: Looking for information and support

Posted by shenriq @shenriq, Jun 4, 2018

I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!

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Diagnosed with ET, My age is 62 and in good health except platelets are 570 and taking Hydroxyurea 500 mg 1/1/2 and ecosprin 75 mg daily . Want to know can Hydroxyurea stop any day or life long we need to take . If some people going through similar issues, please reply . And how long one can take these medicines

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I saw my hematologist this week. One thing that surprised me - when taking HU, one can be very susceptible to sunburn. Anyone experiencing this?
He has me continuing daily baby aspirin, and waiting 3 months this time to see if platelets hold in the 500's. My PCP will draw blood again next month and coordinate care.

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@sregiani

I saw my hematologist this week. One thing that surprised me - when taking HU, one can be very susceptible to sunburn. Anyone experiencing this?
He has me continuing daily baby aspirin, and waiting 3 months this time to see if platelets hold in the 500's. My PCP will draw blood again next month and coordinate care.

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Hydroxyurea can temporarily lower the number of white blood cells in your blood which increases the chance of getting an infection and skin cancers. So it’s important to always wear sunscreen and protective clothing when on an immunosuppressant like HU or any type of chemo therapy.

Most prescriptions will have that alert on labels, which, if you’re like me, I no longer bother reading! 😅
I have to lather on sunscreen too and found the protective clothing made for summer with built in SPF50+ protection. Have you tried any of those Shirts or Tshirts?

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I've tried a few shirts, so-so fit when one is a petite XS. Sundresses are a summer favorite, so sunscreen it is.

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I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight and was wondering how I can just follow discussions on ET without looking at all the blood disorders.
my doctor prescribed hydrea. I opted to wait, and have been taking a low dose aspirin nightly . My platelets have been in the 500s. I was in Florida when I received the diagnosis so I haven’t been back to see my doctor. My next blood work is next week and my appointment is the first week of May.
I have been doing research regarding using vitamin D to reduce platelet count. I’m going to talk to him about it because I don’t want to go on a medication unless absolutely necessary.. if someone can add me to this thread I would appreciate it.

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@hariom1961

Diagnosed with ET, My age is 62 and in good health except platelets are 570 and taking Hydroxyurea 500 mg 1/1/2 and ecosprin 75 mg daily . Want to know can Hydroxyurea stop any day or life long we need to take . If some people going through similar issues, please reply . And how long one can take these medicines

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As far as I know, it is forever. People with sickle cell take forever. The best thing is to do a search on the internet to see what reliable sources say. Like Mayo, Cleveland Clinic, and others

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@1995victoria

As far as I know, it is forever. People with sickle cell take forever. The best thing is to do a search on the internet to see what reliable sources say. Like Mayo, Cleveland Clinic, and others

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Thanks for your reply . It was helpful

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@christinele

I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight and was wondering how I can just follow discussions on ET without looking at all the blood disorders.
my doctor prescribed hydrea. I opted to wait, and have been taking a low dose aspirin nightly . My platelets have been in the 500s. I was in Florida when I received the diagnosis so I haven’t been back to see my doctor. My next blood work is next week and my appointment is the first week of May.
I have been doing research regarding using vitamin D to reduce platelet count. I’m going to talk to him about it because I don’t want to go on a medication unless absolutely necessary.. if someone can add me to this thread I would appreciate it.

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See what your report comes next week then take a call. Regarding vitamin D, try this too , coming out in sun during first hour of sunrise and hour before sunset when sun colour is orange and easily one can see it , preferably in white cotton clothes for sun rays to enter your skin. But in first hour as it may harm too, if sun very bright. Sun rays too has miracle benefits . , at right time .

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@christinele

I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight and was wondering how I can just follow discussions on ET without looking at all the blood disorders.
my doctor prescribed hydrea. I opted to wait, and have been taking a low dose aspirin nightly . My platelets have been in the 500s. I was in Florida when I received the diagnosis so I haven’t been back to see my doctor. My next blood work is next week and my appointment is the first week of May.
I have been doing research regarding using vitamin D to reduce platelet count. I’m going to talk to him about it because I don’t want to go on a medication unless absolutely necessary.. if someone can add me to this thread I would appreciate it.

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Welcome @christinele. You can choose to follow only discussions related to ET and JAK 2. Here's how:

1. Select a discussion of interest to you. For example https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
2. Click the bell icon in the bottom right of the first message.
3. Select "Send me an email and on-site notifications".
4. Click "Save Setting".

If you are receiving notifications for discussions you are not interested in, Select "Mute this discussion. Do not notify me."

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@colleenyoung

Welcome @christinele. You can choose to follow only discussions related to ET and JAK 2. Here's how:

1. Select a discussion of interest to you. For example https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
2. Click the bell icon in the bottom right of the first message.
3. Select "Send me an email and on-site notifications".
4. Click "Save Setting".

If you are receiving notifications for discussions you are not interested in, Select "Mute this discussion. Do not notify me."

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😊 thank you

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