1. < Blood Cancers & Disorders

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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1995victoria | @1995victoria | Oct 6, 2023
In reply to @ldz "I have been on Hydrea 500 every other day since May, the last month MWF. Within..." + (show)
@ldz

I have been on Hydrea 500 every other day since May, the last month MWF. Within the last several months my hair is falling out and it is a handful when I wash it. My Hematologist recently suggested I use a shampoo and cream rinse with Rosemary in it. I have been doing this and haven't seen a sigificant decrease in losing hair.
I also have been getting leg cramps at night.

Any suggestions would be welcomed.

Thank you.

Jump to this post

I've been on HU for 3 years. The first year was the worst, hair loss, bone pain, diarrhea, multiple BM daily. After a year my gut got used to HU, my hair is back to normal, still have some bone pain.....and of course fatigue, which I just soldier thru. for leg cramps I make sure I eat fruit & veggies high in potassium???? works for me......This year my skin is very flakey, don't know what's causing it.....

REPLY
1 reply
preacherswife1977 | @preacherswife1977 | Oct 6, 2023
In reply to @preacherswife1977 "I was recently diagnosed with Essential thrombocythemia. My platelet count was in the upper 700's. Hematologist..." + (show)
@preacherswife1977

I was recently diagnosed with Essential thrombocythemia. My platelet count was in the upper 700's. Hematologist called me on Friday night and I started Hydrea 500 mg on Saturday. I took it that Saturday through the following Sunday (9 doses). My platelet count was in the normal range. I asked if I could stop taking it because I was having so many side effects, they told me no. However, they did let me take it on MWF and that helped the side effects a lot. My next blood draw they were elevated (and I hate taking medicine). A week and 1/2 before my next blood draw I got some CBD gummies 25 mg Full Spectrum and at my next blood draw they were in the normal range. My question is will CBD help lower the platelets so I could stop taking the hydrea? I have some days I get so tired I can hardly go. This past Sunday was one of those days. I got home from church, put my pjs on and went to bed at 3pm and slept sound until 8:30am. I have never done that before. I don't know if it is the hydrea or the ET causing this.

This is all new to me, I have been in medical all my life but not hematology and oncology, Any advice will be greatly appreciated.

Jump to this post

My hematologist told me yesterday that CBD would not lower my platelets. So I will not be getting anymore. My BMB came back with mild fibrosis. I’m guessing from what he said that’s a good thing. Told me to continue with HU MWF. Go back in four weeks for a blood draw. As bad as it is it could always be worse.

REPLY
jola13 | @jola13 | Oct 7, 2023
In reply to @ldz "I have been on Hydrea 500 every other day since May, the last month MWF. Within..." + (show)
@ldz

I have been on Hydrea 500 every other day since May, the last month MWF. Within the last several months my hair is falling out and it is a handful when I wash it. My Hematologist recently suggested I use a shampoo and cream rinse with Rosemary in it. I have been doing this and haven't seen a sigificant decrease in losing hair.
I also have been getting leg cramps at night.

Any suggestions would be welcomed.

Thank you.

Jump to this post

Have you also been given Allopurinol to prevent gout and cramps - stops the build up of crystals. Im on Hydrea 500mg M-S Sun 1000mg 75mg Aspirin - 300mg Allopurinol daily on top of all the other meds - I'm between ET Jak2 - chronic prefibrotic myelofibrosis diagnosed May this year - feel fatigued and have some good days.

REPLY
ldz | @ldz | Oct 7, 2023
In reply to @ldz "I have been on Hydrea 500 every other day since May, the last month MWF. Within..." + (show)
@ldz

I have been on Hydrea 500 every other day since May, the last month MWF. Within the last several months my hair is falling out and it is a handful when I wash it. My Hematologist recently suggested I use a shampoo and cream rinse with Rosemary in it. I have been doing this and haven't seen a sigificant decrease in losing hair.
I also have been getting leg cramps at night.

Any suggestions would be welcomed.

Thank you.

Jump to this post

Thank you for your comment, it has given me hope!

My hair smells great even if I have less of it.

REPLY
marnie12 | @marnie12 | Oct 9, 2023
In reply to @1995victoria "I've been on HU for 3 years. The first year was the worst, hair loss, bone..." + (show)
@1995victoria

I've been on HU for 3 years. The first year was the worst, hair loss, bone pain, diarrhea, multiple BM daily. After a year my gut got used to HU, my hair is back to normal, still have some bone pain.....and of course fatigue, which I just soldier thru. for leg cramps I make sure I eat fruit & veggies high in potassium???? works for me......This year my skin is very flakey, don't know what's causing it.....

Jump to this post

Chelated Magnesium Complex (capsules) works for my restless leg problem and it even helps me relax to sleep. I've tried ALL kinds of magnesium pills that did nothing! Believe me, it has to be chelated to be absorbed, and the complex of m.glycinate, m.malate, m.citrate and m.taurate does a lot of good in many areas of muscular tension and neurologic disorders. I get my Magnesium Complex capsules on Amazon if that helps. Good luck.

REPLY
1 reply
eileen11108 | @eileen11108 | Oct 10, 2023
In reply to @marnie12 "Chelated Magnesium Complex (capsules) works for my restless leg problem and it even helps me relax..." + (show)
@marnie12

Chelated Magnesium Complex (capsules) works for my restless leg problem and it even helps me relax to sleep. I've tried ALL kinds of magnesium pills that did nothing! Believe me, it has to be chelated to be absorbed, and the complex of m.glycinate, m.malate, m.citrate and m.taurate does a lot of good in many areas of muscular tension and neurologic disorders. I get my Magnesium Complex capsules on Amazon if that helps. Good luck.

Jump to this post

I take Magnesium Citrate and Co Q10 to help prevent my going into AFib. So maybe it is helping with the Hydroxyurea problems. I am also only taking HU on M/W/F.

I will look for the complex. Avoid magnesium oxide as it can cause loose bowels.

Eileen

REPLY
vivoconte | @vivoconte | Oct 10, 2023
In reply to @colleenyoung "Hola, @vivoconte I moved your post to this discussion group: - Essential Thrombocythemia: Looking for information..." + (show)
@colleenyoung

Hola, @vivoconte
I moved your post to this discussion group:
- Essential Thrombocythemia: Looking for information and support: https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/

I did this so you can connect with other ET members taking hydroxyurea like @nohrt4me, @claire39, @barb123keller

You may also be interested in this related discussion:
- Essential Thrombocytosis - what's your experience with Jakifi? https://connect.mayoclinic.org/discussion/essential-thrombocytosis/

Fatigue is a common side effect of hydroxyurea. How do you manage it?

Jump to this post

Respecto a la fatiga, intento descansar cuando puedo y realizar algo de actividad física (me cuesta pero al finalizar me siento con más energía).

REPLY
docoltun | @docoltun | Oct 11, 2023
In reply to @preacherswife1977 "I was recently diagnosed with Essential thrombocythemia. My platelet count was in the upper 700's. Hematologist..." + (show)
@preacherswife1977

I was recently diagnosed with Essential thrombocythemia. My platelet count was in the upper 700's. Hematologist called me on Friday night and I started Hydrea 500 mg on Saturday. I took it that Saturday through the following Sunday (9 doses). My platelet count was in the normal range. I asked if I could stop taking it because I was having so many side effects, they told me no. However, they did let me take it on MWF and that helped the side effects a lot. My next blood draw they were elevated (and I hate taking medicine). A week and 1/2 before my next blood draw I got some CBD gummies 25 mg Full Spectrum and at my next blood draw they were in the normal range. My question is will CBD help lower the platelets so I could stop taking the hydrea? I have some days I get so tired I can hardly go. This past Sunday was one of those days. I got home from church, put my pjs on and went to bed at 3pm and slept sound until 8:30am. I have never done that before. I don't know if it is the hydrea or the ET causing this.

This is all new to me, I have been in medical all my life but not hematology and oncology, Any advice will be greatly appreciated.

Jump to this post

Wish I could understand why more doctors don't recommend Anagrelide for ET....when a new physician switched me to Hydrea it caused SO MANY side effects and never did stablize the platelet count. Grateful when I was able to find a physican who said if it worked (for 10 years) why switch?

I'm 72, diagnosed over twenty years ago.

REPLY
2 replies
mdterp76 | @mdterp76 | Oct 11, 2023

Get on the email list for the MPN Foundation and watch their excellent programs and videos. https://www.mpnresearchfoundation.org/

I was just diagnosed in Feb 2023, take iron and baby aspirin daily, HU 2x week at 500 mg each, and just try to live my life. Yes, I do get fatigue from the HU, plus dry skin, and dry eyes, but I need to take the HU to remain stable and prevent thrombotic events. I'm a high-risk with ET, Jak2, and over 60. Have never had a symptom; just high platelets on a regular CBC at my physical in Jan. 2023. Keep active and busy. We can manage this for a long time with this illness. Take care!

REPLY
2 replies
kevinsgirl18 | @kevinsgirl18 | Oct 11, 2023

I was just diagnosed with ET. I am researching, reading, learning, processing what exactly this means for my life and my loved ones.

REPLY
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