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 | May 2, 2023

I got some of those paper pill/souffle cups to pour the HU into. Don't have to touch it that way. I don't put them in the pill pack with my other meds. I put dried kidney beans in the pill pack as placeholders so I remember which days to take one or two HU pills. Been four years and I haven't inadvertently swallowed the beans yet, knock wood!

I just rinse with water. I have very rare mouth sores, but dabbing milk of magnesia on them with a swab takes the sting out. They never last long.

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jleshe447 | @jleshe447 | May 2, 2023

I swish my mouth with Colloidal Silver, then rinse. I also use the 'miracle mouth wash' intermittently.

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eileen11108 | @eileen11108 | May 2, 2023
In reply to @klcc "Do coffee, tea, juice, milk, cocoa count in the 64 ounces of liquid or does it..." + (show)
@klcc

Do coffee, tea, juice, milk, cocoa count in the 64 ounces of liquid or does it have to be all water?

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I count all fluids, It actually says 2 to 3 quarts of fluids a day…64 to 96 ounces.

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eileen11108 | @eileen11108 | May 1, 2023
In reply to @tokyolin "Thank you for your reply. That's helpful information. I have been taking a full glass of..." + (show)
@tokyolin

Thank you for your reply. That's helpful information. I have been taking a full glass of water with the capsule while wearing plastic gloves. But I will start drinking the full 64 oz. today.

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The reason I swish water around my mouth is to prevent mouth sores taking Hydroxyurea.

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tokyolin | @tokyolin | May 1, 2023
In reply to @eileen11108 "Yes, it is a chemo drug. I never touch the capsule. I slide out a capsule..." + (show)
@eileen11108

Yes, it is a chemo drug.

I never touch the capsule. I slide out a capsule onto another lid. You need to take with a full glass of water. I squish some of the water around my mouth first and then slide capsule into my mouth and drink the rest of the water.

To avoid the toxic effect you should drink minimum of 64 ounces of fluid daily.

Eileen

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Thank you for your reply. That's helpful information. I have been taking a full glass of water with the capsule while wearing plastic gloves. But I will start drinking the full 64 oz. today.

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1 reply
klcc | @klcc | Apr 30, 2023

Do coffee, tea, juice, milk, cocoa count in the 64 ounces of liquid or does it have to be all water?

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1 reply
huronshores | @huronshores | Apr 30, 2023
In reply to @huronshores "Hello - I had hip replacement surgery in mid August 2023. The surgeon communicated with my..." + (show)
@huronshores

Hello - I had hip replacement surgery in mid August 2023. The surgeon communicated with my Hematologist prior to surgery and I received instructions on when to stop aspirin etc. My surgery was late in the day, so I stayed in hospital overnight. The nurse had me up for bathroom very soon after surgery. I had instruction on exercises to begin at home and was released to home the next day. Got around with a walker at first, including outdoor walks. I made certain to do the exercises, walked as instructed and had more exercises added with therapist after about 9 days. The relief from hip pain was immediate, incision healed as expected. X-rays with surgeons after care and I was soon able to walk with a cane. (I had sport walking sticks so I used those instead of a cane). The best advice I can give is to follow Doctor’s instructions, do the prescribed exercises for successful recovery. All will be well, I’m sure.

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Oops. That should read mid August 2022.

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huronshores | @huronshores | Apr 30, 2023
In reply to @colleenyoung "Hi Lynn, welcome. Both @nohrt4me @huronshores have ET and have had joint replacement therapies. They may..." + (show)
@colleenyoung

Hi Lynn, welcome. Both @nohrt4me @huronshores have ET and have had joint replacement therapies. They may be able to share their experiences in preparing for surgery, reducing clots and stroke risk, and temporarily going off aspirin.

Is your surgeon aware that you have essential thrombocythemia?

Jump to this post

Hello - I had hip replacement surgery in mid August 2023. The surgeon communicated with my Hematologist prior to surgery and I received instructions on when to stop aspirin etc. My surgery was late in the day, so I stayed in hospital overnight. The nurse had me up for bathroom very soon after surgery. I had instruction on exercises to begin at home and was released to home the next day. Got around with a walker at first, including outdoor walks. I made certain to do the exercises, walked as instructed and had more exercises added with therapist after about 9 days. The relief from hip pain was immediate, incision healed as expected. X-rays with surgeons after care and I was soon able to walk with a cane. (I had sport walking sticks so I used those instead of a cane). The best advice I can give is to follow Doctor’s instructions, do the prescribed exercises for successful recovery. All will be well, I’m sure.

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1 reply
lynnevb | @lynnevb | Apr 30, 2023
In reply to @colleenyoung "Hi Lynn, welcome. Both @nohrt4me @huronshores have ET and have had joint replacement therapies. They may..." + (show)
@colleenyoung

Hi Lynn, welcome. Both @nohrt4me @huronshores have ET and have had joint replacement therapies. They may be able to share their experiences in preparing for surgery, reducing clots and stroke risk, and temporarily going off aspirin.

Is your surgeon aware that you have essential thrombocythemia?

Jump to this post

Yes the surgeon is aware but he has not spoken with the oncologist (yet). That is a next step. I have had surgery in the past without problems but it was 18 years ago when I was younger and my platelets were not as high as now and and I was not on Hydrea or aspirin then. The ET has progressed from no meds for 10 years to 1500 mg of Hydrea and 2 (81 mg) asprin daily. Also if I go off asprin then I get migraines that are 30/10 on the pain scale.

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nohrt4me | @nohrt4me | Apr 30, 2023
In reply to @lynnevb "My hair is thinner but I am not sure it is due to the Hydrea. It..." + (show)
@lynnevb

My hair is thinner but I am not sure it is due to the Hydrea. It could be aging or hormones.

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My hair started "shedding" a few years before I went through The Change, likely before ET onset at 55. It grew back whiter and finer. HU caused minor hair loss, but age and hormonal changes were bigger issues for me.

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