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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nohrt4me | @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)
@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.

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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.

REPLY
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)
@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

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

REPLY
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.

REPLY
6 replies
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)
@garyinmo

To answer your question, my platelet target is just to keep it in the normal range of 150-400. I've just had two consecutive tests where the platelets were in the range (low 300's), and the white blood cell count is also not elevated, so after 10 months it looks like I finally have a good balance. The doctor has extended my next blood test out to 3 months now, as opposed to 6 weeks. As far as how long it took me to respond to the meds, I was down out of the danger zone from 1700 to the 500 range within a couple of months. It just took many more months of finessing to get the platelet count to stay in the normal range and have the white blood cell count not be elevated also. I've stayed in great shape and drink alcohol in moderation, though I noticed I cannot handle it like I used to. Probably due to the Hydroxy's demand on the liver. Before if I had 4 glasses of wine on an occasion it was not that noticeable, but nowadays I would be plowed drinking that much in a setting.

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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.

REPLY
nohrt4me | @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)
@garyinmo

To answer your question, my platelet target is just to keep it in the normal range of 150-400. I've just had two consecutive tests where the platelets were in the range (low 300's), and the white blood cell count is also not elevated, so after 10 months it looks like I finally have a good balance. The doctor has extended my next blood test out to 3 months now, as opposed to 6 weeks. As far as how long it took me to respond to the meds, I was down out of the danger zone from 1700 to the 500 range within a couple of months. It just took many more months of finessing to get the platelet count to stay in the normal range and have the white blood cell count not be elevated also. I've stayed in great shape and drink alcohol in moderation, though I noticed I cannot handle it like I used to. Probably due to the Hydroxy's demand on the liver. Before if I had 4 glasses of wine on an occasion it was not that noticeable, but nowadays I would be plowed drinking that much in a setting.

Jump to this post

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.

REPLY
garyinmo | @garyinmo | Oct 2, 2023
In reply to @nohrt4me "I'm also CALR. Started on 500 mg HU daily when platelets approached 800. Took a year..." + (show)
@nohrt4me

I'm also CALR. Started on 500 mg HU daily when platelets approached 800. Took a year and an increase to 1000 mg M-W-F to get them to 400s. That's where I've been for the last five years (I'm 69 now) with one or two jumps to the low 500s. Very mild side effects with HU that exercise and diet changes helped.

Doc said that CALRs are less prone to clotting, so she's happy with mu maintenance dose. Wondering what your hemo's platelet target for you is.

Also, seems to me that CALR patients take longer to respond to meds than those with JAK2. Anyone else notice this?

Jump to this post

To answer your question, my platelet target is just to keep it in the normal range of 150-400. I've just had two consecutive tests where the platelets were in the range (low 300's), and the white blood cell count is also not elevated, so after 10 months it looks like I finally have a good balance. The doctor has extended my next blood test out to 3 months now, as opposed to 6 weeks. As far as how long it took me to respond to the meds, I was down out of the danger zone from 1700 to the 500 range within a couple of months. It just took many more months of finessing to get the platelet count to stay in the normal range and have the white blood cell count not be elevated also. I've stayed in great shape and drink alcohol in moderation, though I noticed I cannot handle it like I used to. Probably due to the Hydroxy's demand on the liver. Before if I had 4 glasses of wine on an occasion it was not that noticeable, but nowadays I would be plowed drinking that much in a setting.

REPLY
2 replies
kapow | @kapow | Jul 21, 2023
In reply to @nohrt4me "Counts will fluctuate, but your counts are trending down, and that's what they look at. It..." + (show)
@nohrt4me

Counts will fluctuate, but your counts are trending down, and that's what they look at. It took me a year to go from 800s to 500s, and there were fluctuations like yours. The second year, three extra caps/week were added, and I have stayed almost consistently in the 400s for five years.

Call the doc if you are worried, but 689 to 700 is only about a 10-point rise. Mine fluctuate regularly between 425 and 525.

It's nerve racking, I know. Hang in there.

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Thank you for this! It is reassuring to know that this happens, but that at least I am on the right track. Really appreciate your response. < 3

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nohrt4me | @nohrt4me | Jul 21, 2023
In reply to @kapow "I have received my results from my blood tests after 4 weeks on 500 mg. of..." + (show)
@kapow

I have received my results from my blood tests after 4 weeks on 500 mg. of Hydroxyurea. The first week went from 891 to 790 then down to 689 but the latest result was an increase to 700. I had another blood test done today (being done every week) but won't know the result for a while. Do you think I should be concerned about the elevation? Is this just a fluke, or am I becoming accustomed to the drug, and it is no longer going to be effective, at least at this level? I know these are questions for my haematologist, but I hope maybe there is some anecdotal evidence that you might be able to share with me. (I have no appointment until October.....but should I call? I don't know)

Jump to this post

Counts will fluctuate, but your counts are trending down, and that's what they look at. It took me a year to go from 800s to 500s, and there were fluctuations like yours. The second year, three extra caps/week were added, and I have stayed almost consistently in the 400s for five years.

Call the doc if you are worried, but 689 to 700 is only about a 10-point rise. Mine fluctuate regularly between 425 and 525.

It's nerve racking, I know. Hang in there.

REPLY
1 reply
eileen11108 | @eileen11108 | Jul 20, 2023
In reply to @docoltun "Yep, if I don't want to risk those high platelet numbers, I take the medication daily,..." + (show)
@docoltun

Yep, if I don't want to risk those high platelet numbers, I take the medication daily, see the hematologist as needed (was down to annual, back to semi-annual due to age, I think). At 72, I've been on Anagrelide with the exception of a few months when provider changed after 10 successful years. The hyrea was NOT for me, lots of trouble stabilizing blood numbers across the board. New search brought me back to what had worked and still works. No symptoms.

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Thank you for your encouraging post. My hematologist has suggested I switch from HU to Anagrelide because of headaches. I have been hesitant because I have AFib and some have palpitations taking it. I just had a stress test and echocardiogram with normal results so your experience helps me decide to try it,

Thank you, Eileen

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kapow | @kapow | Jul 19, 2023

I have received my results from my blood tests after 4 weeks on 500 mg. of Hydroxyurea. The first week went from 891 to 790 then down to 689 but the latest result was an increase to 700. I had another blood test done today (being done every week) but won't know the result for a while. Do you think I should be concerned about the elevation? Is this just a fluke, or am I becoming accustomed to the drug, and it is no longer going to be effective, at least at this level? I know these are questions for my haematologist, but I hope maybe there is some anecdotal evidence that you might be able to share with me. (I have no appointment until October.....but should I call? I don't know)

REPLY
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