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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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

preacherswife1977 | @preacherswife1977 | Oct 3, 2023

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.

ontheverge | @ontheverge | Oct 3, 2023

In reply to @garyinmo "To answer your question, my platelet target is just to keep it in the normal range..." + (show)

Thanks for the interesting observation about alcohol. I've had an afternoon glass of red wine 4 or 5 days weekly for years (following in the footsteps of my 96-year-old mother who swears her longevity and lack of serious health problems are the result of a daily glass of red). During the months I was on Hydrea I noticed I was "tipsy" and more drowsy than usual after the 4-ounce glass that had previously not affected me.

nohrt4me (Jean) | @nohrt4me | Oct 2, 2023

In reply to @garyinmo "To answer your question, my platelet target is just to keep it in the normal range..." + (show)

Glad it's working for you!

A few patients have told me that their hemo's told them not to drink on HU. Don't know if that was an across-the-board guideline, or just an oblique way for doc to put the brake on suspected overimbibing. The liver connection makes sense, though.

When people get infused chemo, they get all kinds of info and tips ahead of time. When MPN patients get HU, docs leave them to learn about it from Dr Google, where info is scary and contradictory. Then the docs wonder why patients won't take it.

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