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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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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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
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
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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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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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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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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uky654 | @uky654 | May 3, 2023

Was diagnosed with ET and JAK2 positive. Have been taking Hydrea 500mg and 81mg baby aspirin - both daily. In general, have good days and bad days something pretty normal when you are in your 70s. At times I do feel extra nauseous. My additional challenge is that I was scheduled to have Total Knee replacement in February which was cancelled due to ET and I cannot get injections until platelets are stable. My platelet level has been in the 500s for about 2 years. In January, I started bruising in my legs and my PCP referred me to my hematologist. I started Hydrea in March (with platelet level of 633) and after 2 weeks it went down to 486 and 2 weeks after that it went up to 531. After reading all the posts...this variation is to be expected. Last night I had such severe burning type pain from my hips down to knees ... feeling better after taking Celebrex. But I really, minimally need a knee injection. I am seeing my Hematologist next week and will discuss my concern. Has anyone felt the pain I described? - it may have just been my osteoarthritis.

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2 replies
bevjg | @bevjg | May 4, 2023
In reply to @uky654 "Was diagnosed with ET and JAK2 positive. Have been taking Hydrea 500mg and 81mg baby aspirin..." + (show)
@uky654

Was diagnosed with ET and JAK2 positive. Have been taking Hydrea 500mg and 81mg baby aspirin - both daily. In general, have good days and bad days something pretty normal when you are in your 70s. At times I do feel extra nauseous. My additional challenge is that I was scheduled to have Total Knee replacement in February which was cancelled due to ET and I cannot get injections until platelets are stable. My platelet level has been in the 500s for about 2 years. In January, I started bruising in my legs and my PCP referred me to my hematologist. I started Hydrea in March (with platelet level of 633) and after 2 weeks it went down to 486 and 2 weeks after that it went up to 531. After reading all the posts...this variation is to be expected. Last night I had such severe burning type pain from my hips down to knees ... feeling better after taking Celebrex. But I really, minimally need a knee injection. I am seeing my Hematologist next week and will discuss my concern. Has anyone felt the pain I described? - it may have just been my osteoarthritis.

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I have no pain or anything else with Hydrea, 500 mg daily. My platelets were 800,000 now in low 400s. I am JAK2 positive.

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nohrt4me | @nohrt4me | May 4, 2023
In reply to @uky654 "Was diagnosed with ET and JAK2 positive. Have been taking Hydrea 500mg and 81mg baby aspirin..." + (show)
@uky654

Was diagnosed with ET and JAK2 positive. Have been taking Hydrea 500mg and 81mg baby aspirin - both daily. In general, have good days and bad days something pretty normal when you are in your 70s. At times I do feel extra nauseous. My additional challenge is that I was scheduled to have Total Knee replacement in February which was cancelled due to ET and I cannot get injections until platelets are stable. My platelet level has been in the 500s for about 2 years. In January, I started bruising in my legs and my PCP referred me to my hematologist. I started Hydrea in March (with platelet level of 633) and after 2 weeks it went down to 486 and 2 weeks after that it went up to 531. After reading all the posts...this variation is to be expected. Last night I had such severe burning type pain from my hips down to knees ... feeling better after taking Celebrex. But I really, minimally need a knee injection. I am seeing my Hematologist next week and will discuss my concern. Has anyone felt the pain I described? - it may have just been my osteoarthritis.

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Just curious about why you can't have knee injections (cortisone?) until your platelets were stable. I have scoliosis and can foresee a time when I need shots at some point, so would be grateful to have more info.

Hope your hemo will communicate with your ortho about this.

I find that the ET itself isn't a big deal except for the fatigue, but it complicates all your other ailments.

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