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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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)

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.

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)

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

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

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)

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.

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)

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.

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)

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.....

eileen11108 | @eileen11108 | Oct 6, 2023

In reply to @sdduan "Triple Negative Essential Thrombocythemia hi all, I have seen my platelet counts going up over past..." + (show)

The next step is Anagrelide or Pegasys injections. You can research them on this site.

sdduan | @sdduan | Oct 5, 2023

Triple Negative Essential Thrombocythemia
hi all, I have seen my platelet counts going up over past 6 years. Starting last year, Doctors started looking into it. No gene mutations identified. I had bone marrow biopsy twice and results confirmed some disorder and showed scarring. Since last October, my platelet counts have been 700 and 900 range. I started taking hydroxyurea this July but the counts have not dropped yet even with elevated 1000mg/day dosing. Has any one had similar issue of not responding to the hydroxyurea? What other options do I have? I am not even 50 yet. This thing really got me on different path now. Thanks so much in advance!

ldz | @ldz | Oct 5, 2023

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

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.

nohrt4me (Jean) | @nohrt4me | Oct 5, 2023

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

I understand that fatigue and sympathize. Only thing that helps is coffee and my exercise bike + 20-30 minutes of yoga every day. Also may help to cut back on starches and sugar. It's kind of a constant low-level battle, especially since I have mobility problems from lifelong scoliosis (I am 70).

CBD did not lower my platelets or help my insomnia or restless leg. People in my support group wanted to know about it. I researched, ordered CBD oil from a reputable manufacturer, dosed as suggested for a month, and got nothing but acid reflux. When I reported that it did nothing, I was told by the sellers, oh, you must be taking it wrong, not dosing right, not giving it enough time to work ... in other words, my fault not the drug, and I needed to shuck out more money. At 50 bucks an ounce, it's a scam, imo.

I talked to my GP. She said she saw no problem with microdosing with low-dose THC products (legal where I live) at night for the insomnia and restless leg, but to clear with cardiologist and hematologist. She emphasized that cannabis is not an alternative treatment for the underlying cancer.

eileen11108 | @eileen11108 | Oct 4, 2023

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

I have never read about CBD gummies and blood disorders, Please update us on what your hematologist says and your progress. Thanks, Eileen

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