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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jola13 | @jola13 | Jul 4, 2023
In reply to @kapow "Hi. I'm asking another question. I had a bone marrow aspiration and biopsy performed to have..." + (show)
@kapow

Hi. I'm asking another question. I had a bone marrow aspiration and biopsy performed to have a baseline established. This was nearly 2 weeks ago, and my hip is still bothering me. I have difficulty, especially first thing in the morning with supporting myself on that leg. Is this normal? Will the pain eventually go away?

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This is pretty normal - I had pain in that area for about a month - after first and second biopsy, I have ET /Chronic MPF/pre fibrotic myelofibrosis - platelets are 893, on 75mg Aspirin and 500mg HU this is my 6th day on HU. Feeling very disoriented and spaced out had a headache last night. Each day is different at the moment I guess my body is getting used to HU.
Good luck!

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1 reply
ger63 | @ger63 | Jul 4, 2023
In reply to @kapow "Hi. I'm asking another question. I had a bone marrow aspiration and biopsy performed to have..." + (show)
@kapow

Hi. I'm asking another question. I had a bone marrow aspiration and biopsy performed to have a baseline established. This was nearly 2 weeks ago, and my hip is still bothering me. I have difficulty, especially first thing in the morning with supporting myself on that leg. Is this normal? Will the pain eventually go away?

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I would follow up with heme/onc MD. My pain cleared up in a few days. Hope you feel better.

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kapow | @kapow | Jul 3, 2023

Hi. I'm asking another question. I had a bone marrow aspiration and biopsy performed to have a baseline established. This was nearly 2 weeks ago, and my hip is still bothering me. I have difficulty, especially first thing in the morning with supporting myself on that leg. Is this normal? Will the pain eventually go away?

REPLY
2 replies
kapow | @kapow | Jun 30, 2023
In reply to @1995victoria "Sounds like your doctors are doing all the right things. At the beginning I also had..." + (show)
@1995victoria

Sounds like your doctors are doing all the right things. At the beginning I also had frequent blood tests to see if HU was doing the job. I also take a baby aspirin. Finally after many ups and downs, I'm on 1,000mg HU and baby aspirin. First year was toughest, my gut didn't like HU, but now it got use to it. My platelets are in normal range and holding.

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Glad to hear that your platelets are within the normal range. I forgot to mention that I also take the 81 mg aspirin....it was prescribed after I had the stroke (in fact when in hospital I was on heparin, but that was stopped when I left.)

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ortho3 | @ortho3 | Jun 30, 2023
In reply to @jola13 "Blood test and 2 biopsies. Yes – JAK2 platelet count 893 – 75mg Aspirin and 500mg..." + (show)
@jola13

Blood test and 2 biopsies. Yes – JAK2 platelet count 893 – 75mg Aspirin and 500mg HU for the next 6weeks- blood check at 2weeks and then at 6weeks.

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Sounds like a good plan!

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nohrt4me | @nohrt4me | Jun 30, 2023
In reply to @kapow "Thank you for the input. (I find it hard to drink that much but I will..." + (show)
@kapow

Thank you for the input. (I find it hard to drink that much but I will try.)

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Trick for drinking water: I keep a 32 oz water bottle in the fridge. Every time I walk through the kitchen, I take a good swig. I also pull out the bottle for meals. Once I've drunk two cintainers, my water quota is filled!

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jola13 | @jola13 | Jun 30, 2023
In reply to @ortho3 "By blood test or bone marrow biopsy? You are in a good place to get information..." + (show)
@ortho3

By blood test or bone marrow biopsy? You are in a good place to get information about it.

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Blood test and 2 biopsies. Yes – JAK2 platelet count 893 – 75mg Aspirin and 500mg HU for the next 6weeks- blood check at 2weeks and then at 6weeks.

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1 reply
kapow | @kapow | Jun 29, 2023
In reply to @eileen11108 "Hi @kapow I am 79 and was diagnosed a year ago with Essential Thrombocythemia and JAK2..." + (show)
@eileen11108

Hi @kapow

I am 79 and was diagnosed a year ago with Essential Thrombocythemia and JAK2 mutation. When you get the bone marrow biopsy results ask your doctor to explain it all,

Make sure you are drinking minimum 64 ounces of fluid daily to help clear toxic effects of Hydroxyurea.

Best wishes on your journey, Eileen

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Thank you for the input. (I find it hard to drink that much but I will try.)

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1 reply
eileen11108 | @eileen11108 | Jun 29, 2023
In reply to @kapow "Hi everyone. I am a 68 year old woman, physically active with controlled asthma. I just..." + (show)
@kapow

Hi everyone. I am a 68 year old woman, physically active with controlled asthma. I just recently had a small stroke caused by a blood clot in my carotid artery. I have had surgery to remove the clot, and have been able to return to my life with no lingering after effects from the stroke. (My whole right side had gone numb, and I was unable to walk, but it all has returned to normal) But as a result of this they finally looked more closely at my bloodwork, and discovered that my platelets have been elevated for the past 4 or 5 years. A genetic test was done on my blood and I was told I have Essential Thrombocythemia. But they took a bone marrow biopsy and aspiration the day that I was told. Those results are not back yet. I am asking for help in knowing what questions to ask of my Haematoligist. (She has started me on 500 mg of Hydroxyurea which I have been taking for a week with no siginficant side effects and I am having blood tested weekly right now.)

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Hi @kapow

I am 79 and was diagnosed a year ago with Essential Thrombocythemia and JAK2 mutation. When you get the bone marrow biopsy results ask your doctor to explain it all,

Make sure you are drinking minimum 64 ounces of fluid daily to help clear toxic effects of Hydroxyurea.

Best wishes on your journey, Eileen

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1 reply
eileen11108 | @eileen11108 | Jun 29, 2023
In reply to @winmil99 "I am about to turn 70..active healthy woman . Vegetarian x 50 years. Run, kayak, and..." + (show)
@winmil99

I am about to turn 70..active healthy woman . Vegetarian x 50 years. Run, kayak, and practice yoga x 50 yr. Routine blood work reveals plt trending up x 2 yr now..430- 602 now at 543..I was referred to hematologist who told me my diagnosis is prob ET. ..blood smear reveals JAC2 pos. But BCR/ABLI MRNA neg.. will ge getting bone marrow test soon…My Dr wants me on asa daily and now wants me on Hydroxyurea …I do not want to take that drug..It just bothers me to take a chemo…are my plts high enough to be warranting that drug?Is it the JAC2 pos diagnosis that needs the drug? Just starting to read about it. ..any info is helpful. Thanks , cathy

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Hi winmil99,

Welcome to the site. I was diagnosed in June 2022 with platelets at 735. My diagnosis is ET JAK2. I have been on and off 500 mg Hydroxyurea. First it was daily, then every other day, and now only on Monday/Wednesday/Friday. If I have to take HU I hope I can continue taking this way, My next hematologist appointment is July 11 and I will update my lab results.

I greatly understand your hesitation. It is a chemo pill with possible side effects. However, all the alternatives also have side effects. If you need to start on HU I suggest you ask for a slow start. Also, remember to drink minimum 64 ounces of fluid daily to help eliminate the toxicity.

Best wishes, Eileen

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