@writernana I am 71 with ET CALR. Big believer in hydration! I started drinking 64 oz every day when I went on hydroxyurea 8 yrs ago (I drag a purple 32 oz bottle around and fill it twice). It helps with occasional constipation and abdominal discomfort, and gets the meds circulating. It also helps a bit with afternoon fatigue and mild headaches.
@nohrt4me Thank you so much for your encouragement to drink more water! I definitely need to increase and track my intake on a daily basis.......something I've totally ignored until now.
I am living with both. On 325 aspirin 1 x day and 500 mg Hydrea 2 x day. I am only 55 yrs old. And not dealing with this well. I want to be me again. Tired a lot get confused with multitasking. Heavy head pressure behind my eyes really hot. But freezing to the point it hurts.
The dr told me I needed a support group. Nero is trying to figure out the ischemic disease. Had a CTA scan and ultrasound of my arteries on the 20th. Just waiting for appt.
With Dr. My platelets went done to 385. That was a high 5. I pray I get to be me again. Like I’m in a fog. Not here.
Looking for reassurance that this is my new way. Does it get better some days I’m me I feel great. I get all excited and then the tiredness happens and I get frustrated. Thanks for listening. I have faith and we all need to help each other. Thank you
@amlqueen
I can’t tell you that it gets better. I can only tell you that it continues to change. the days that you feel good -You have to just enjoy and push forward without overdoing it. Try to do as healthy as you can with every decision you make. I go to the gym twice a week sometimes three times I try to do yoga. I eat really healthy if I can. I don’t smoke. I drink a glass of wine a week there’s times you will enjoy and you will forget that you have this thing and if you look around, you’ll find out everybody is dealing with something . you are not alone. Leene
@julmo wow. Had no idea you needed to do blood work that frequently. This is new to me. I have my first check next week. I am so happy that you have stabilized and I send best wishes that you remain so!
@dewz13 My doc wants me to have a blood test every 3 months to keep on top of my platelet count. This is so he can adjust or change my meds. I was diagnosed April 2025. My platelets have been between 450-550. I'm on 1 baby aspirin a day...no side effectss...knock on wood. Best of luck to you.
@dewz13 My doc wants me to have a blood test every 3 months to keep on top of my platelet count. This is so he can adjust or change my meds. I was diagnosed April 2025. My platelets have been between 450-550. I'm on 1 baby aspirin a day...no side effectss...knock on wood. Best of luck to you.
@kat260 JAK2 burden diagnostic test can be repeated to track the effectiveness of your treatment. I am currently looking for the billing code to get my insurance to cover it.
@dewz13 You don't need to "hope." Let him know you are comfortable and would like having quarterly blood tests. He should either call you at least 1-2x a year to discuss things or at the least send you his comments on your blood tests. Quarterly, my doc always asks me a series of questions: Have you lost weight, does your skin really itch, do you get night sweats where you really, really, sweat, do you get full after eating just a tiny bit, etc. Best of luck.
@colleenyoung ; @janemc ; @lea123
Hi Colleen, Now I have had my BMB and ultrasound for spleen. The BMB went well. I had conscious sedation and local lidocaine, - so minimal pain. All BMB results are not out yet.
My spleen was normal size as well as other organs like liver etc. 🙂
I am still on HU 5 days a week and the platelets have not really come down much in 3 months. The last count was 646. 🙁 I have an appointment to see my hem doctor in about 3 weeks.
Hanging in there.
- Hipsu
@hipsu5@colleenyoung ; @janemc
I have received results from my BMP. And I am happy to report that there were no leukemia tendencies and also no myelofibrosis or scarring. So it's just ET/JAK2. My platelet count came down a little in the last test in the beginning of March, but my hem/onc doctor asked me to take 500mg HU now 7 days a week. I really feel those two days! My head is very achy, congested in the afternoon/ evening. I also have a little bit of stomach uneasiness. Hopefully I get used to it again. All and all I feel lucky.
- Hipsu ..
@hipsu5@colleenyoung ; @janemc
I have received results from my BMP. And I am happy to report that there were no leukemia tendencies and also no myelofibrosis or scarring. So it's just ET/JAK2. My platelet count came down a little in the last test in the beginning of March, but my hem/onc doctor asked me to take 500mg HU now 7 days a week. I really feel those two days! My head is very achy, congested in the afternoon/ evening. I also have a little bit of stomach uneasiness. Hopefully I get used to it again. All and all I feel lucky.
- Hipsu ..
HU can upset our GI systems. As nohrt4me advises, drink LOTS of water each day. I like yogurt's soothing effects too. You always take your capsules with food, right?
Your headaches may be from the ET itself. Have you ever sprayed lidocaine on the back of your neck? That can help. For me, HU greatly reduced the severity of my headaches. Hope that will be true for you as well.
ET may also be responsible for your congestion. Our mutated platelets are so weird that they can trigger our histamine response. With permission from my oncology nurse, I take an allergy relief pill every morning. Makes all the difference!
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@nohrt4me Thank you so much for your encouragement to drink more water! I definitely need to increase and track my intake on a daily basis.......something I've totally ignored until now.
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4 Reactions@amlqueen
I can’t tell you that it gets better. I can only tell you that it continues to change. the days that you feel good -You have to just enjoy and push forward without overdoing it. Try to do as healthy as you can with every decision you make. I go to the gym twice a week sometimes three times I try to do yoga. I eat really healthy if I can. I don’t smoke. I drink a glass of wine a week there’s times you will enjoy and you will forget that you have this thing and if you look around, you’ll find out everybody is dealing with something . you are not alone. Leene
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13 Reactions@dewz13 My doc wants me to have a blood test every 3 months to keep on top of my platelet count. This is so he can adjust or change my meds. I was diagnosed April 2025. My platelets have been between 450-550. I'm on 1 baby aspirin a day...no side effectss...knock on wood. Best of luck to you.
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4 Reactions@panamsandy
Thanks for that information. It’s good to know there is a variety “check in” times. I hope to get to your timing!
My oncology nurse just recommended Smooth Move tea by Traditional Medicinals for constipation. Works!
@maine here's the procedure code that was on my EOB when I had the Jak 2 lab done.
81270
JAK2 (Janus kinase 2) (eg, myeloproliferative disorder) gene analysis, p.Val617Phe (V617F) variant
The ICD10 code is D47.3
Essential thrombocythemia (ET): Characterized by high platelets and often a JAK2 mutation
Lab Corp charged $567 for the Lab, but after insurance discount I paid about $100 out of pocket. I'm on a high deductible plan.
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2 Reactions@daren801
Thank you! Thank you! Thank you! 😊
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1 Reaction@dewz13 You don't need to "hope." Let him know you are comfortable and would like having quarterly blood tests. He should either call you at least 1-2x a year to discuss things or at the least send you his comments on your blood tests. Quarterly, my doc always asks me a series of questions: Have you lost weight, does your skin really itch, do you get night sweats where you really, really, sweat, do you get full after eating just a tiny bit, etc. Best of luck.
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4 Reactions@hipsu5 @colleenyoung ; @janemc
I have received results from my BMP. And I am happy to report that there were no leukemia tendencies and also no myelofibrosis or scarring. So it's just ET/JAK2. My platelet count came down a little in the last test in the beginning of March, but my hem/onc doctor asked me to take 500mg HU now 7 days a week. I really feel those two days! My head is very achy, congested in the afternoon/ evening. I also have a little bit of stomach uneasiness. Hopefully I get used to it again. All and all I feel lucky.
- Hipsu ..
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5 Reactions@hipsu5
Congratulations on this wonderful news!!!!
HU can upset our GI systems. As nohrt4me advises, drink LOTS of water each day. I like yogurt's soothing effects too. You always take your capsules with food, right?
Your headaches may be from the ET itself. Have you ever sprayed lidocaine on the back of your neck? That can help. For me, HU greatly reduced the severity of my headaches. Hope that will be true for you as well.
ET may also be responsible for your congestion. Our mutated platelets are so weird that they can trigger our histamine response. With permission from my oncology nurse, I take an allergy relief pill every morning. Makes all the difference!
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Like -
Helpful -
Hug
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