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 | 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
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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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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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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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?

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2 replies
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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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
Rhonda Gregory | @rjgregory440 | Jul 4, 2023
In reply to @jola13 "This is pretty normal - I had pain in that area for about a month -..." + (show)
@jola13

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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Be sure to drink at least 64 ounces of water a day when taking hydrea...it will help with the side effects...we need to flush the toxins of the medication out of our system.

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1 reply
jola13 | @jola13 | Jul 4, 2023
In reply to @rjgregory440 "Be sure to drink at least 64 ounces of water a day when taking hydrea...it will..." + (show)
@rjgregory440

Be sure to drink at least 64 ounces of water a day when taking hydrea...it will help with the side effects...we need to flush the toxins of the medication out of our system.

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Hi
Yes thanks,I drink 6x 500ml of water, decaffeinated brewed coffee, tea.
:lemonade so lots of liquids, have no appetite but am eating as need the strength- I want to sleep all the time. What gets me is that this low dose - can't imagine what its like taking HU 3 times a day.

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stevehurlburt | @stevehurlburt | Jul 4, 2023
In reply to @shenriq "Hi Lydia, Thank you for your response and personal statement about ET. I have no gene..." + (show)
@shenriq

Hi Lydia,
Thank you for your response and personal statement about ET. I have no gene mutations and am wrestling only with the elevated platelet issues. I am continuing to seek out information and like you, was encouraged to get a 2nd opinion by a friend and have been in contact with Sloan Kettering. I am not sure about the value of another opinion, because over the years, my numbers have been consistently elevated. It was important for me to hear from someone who has taken Hydrea, to hear about a personal experience, so thank you for that.
Would you be open to sharing what your side effects are/have been and, is it expected that you'll be taking Hydrea for life? Also, are there any limitations that you're aware of, while on this drug? I'm working to stay positive, but my diagnosis is new enough for me to still be rattled.
Thanks again for your kindness. Good luck to you, too!

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Diagnosed with ET 5 years ago….high platlets led to Bone Marrow Biopsy to confirm and found Jak2 as well as other genetic markers! My second bought with Cancer so,less shocked…Cancer is just another name for something wild they do not understand fully.
Started Hydrea with an Oncologist who specialized in Breast cancer, then lung cancer…asked if they had a Mylofibrosis Specialist? Nope I was there only patient.
So I searched internet and found one of the best Specialists…fortunately in my hometown of PHX. Been going to her about 3 years…continued Hydrea…but started having side effects so tried Pegysus/Interferon…sleep 14 hr a day! Returned to Hydrea. Developed platlets stuck in my extremities…fingers and toes…and a sore on my big toe led to a vascular specialist….we did a surgery, started blood thinner and added a stent!
Took a while to recover, but been thru therapy and bought custom orthotics to walk better. That is where I am today…trying to manage the Hydrea does from 1000/ day to 500 to 500 every other day.
Went to city of hope since they have a Mylofibrosis Dept…they just wanted to test me to see if I am a candidate for BONE Marrow Transfusion….which I am doing because it may eventually go there if it progresses. BUT when I asked about Maintenance programs and clinical trials? They said I seemed fine…the ONLY a cure is BMT. I said thanks but I just want to maintain the side effects for now.
I experience every Rare Drug side effect you can. I have had my drug interaction tested multiple times. Found one making my gums fibris? A couple that are redundant. Took myself off statins when I could not walk for any period of time/ distance….Learned that I have to be in charge of MY Care! Doctors each havenTheir go to treatments and if they work for you great,,,.,but modern medicine does not allow them to truly focus on YOUR case. Being 71 and on Medicare, we get 15 minute appointments. So do your own research, this CANCER is rare and a lot of unknowns…
But you can live many many years without progressing!
Good luck!
Steve

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