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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eileen11108 | @eileen11108 | Nov 22, 2022
In reply to @cajunqueen "Update!!! We did labs last week and my platelet count is down in the 640 range,..." + (show)
@cajunqueen

Update!!! We did labs last week and my platelet count is down in the 640 range, so it came down again!! My Hematologist will have me continue the dosage of Hydroxyurea 500 mg per day then 2 on Saturday for another 4 weeks, go back for labs in December to see where my platelets are and if still dropping, she will do another lab in January and meet with me and go from there! Praying this dosage continues to lower my platelets because I am having little to no side effects! Just lower stomach pains here and there, which is gas, but I can live with it. May start taking GasX daily about an hour after my Hydroxy and see if that helps at all. Know that I am praying for each and every one of you daily for health & healing. Happy Thanksgiving to all and God bless!
Tifnie Queen

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I eat a meal and then take Hydroxyurea 30 minutes later with full glass of water. I drink the minimum of 64 ounces of fluids. No stomach distress doing this.

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garyinmo | @garyinmo | Nov 21, 2022

I was just diagnosed last week with ET (CALR mutation) as a result of a marrow biopsy and a routine test resulting in a platelet count of 1700. Looking back over 8 months or so ago I noticed large lumps were resulting from contusions, which was new for me, but regretfully, I didn't get checked out. I have been on 1000 mg of hydroxyurea for over two weeks which lowered it to 1300, and just had the dosage raised to 1500mg 3 days ago. Luckily I have had no side effects from it. I am a very healthy 53 year old male, bicyclist, and have been eating super healthy in an attempt to shed blood pressure medication, so this was a huge let down. My physician tells me not to travel for work until the platelets are below 1000. I carry a lot of anxiety over being terrified of a stroke, or something that will incapacitate me as I'm told of the risks I have of developing a clot, stroke, or myelofibrosis in the next 15 years when, at my age I still plan to be working. I was told to basically keep doing what I am doing eating healthy and exercising and come back in a month for another test. Anyone else get any advice on something different they should be eating / avoiding / doing? One word of caution - Do not take hydroxurea right before a big meal. I did that and it bloated me to the point where I thought my stomach would pop! Wish all of you good health.

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hariom1961 | @hariom1961 | Nov 21, 2022

My case even very similar. At 61 and asymptomatic, six months back platelets were 1150. With Hydroxyurea 500 mg and aspirin 75 mg every day they came down to 480. Walking , swimming, cycling had been my regular routine for years. Don’t know what must be the cause but after taking two doses of Covid vaccination COVISHIELD and was covid positive twice, these high platelets were accidentally found in my yearly routine blood test. Dr feels covid infection can be the reason . Would appreciate views from others too with similar experiences and guidance .

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3 replies
cajunqueen | @cajunqueen | Nov 21, 2022

Update!!! We did labs last week and my platelet count is down in the 640 range, so it came down again!! My Hematologist will have me continue the dosage of Hydroxyurea 500 mg per day then 2 on Saturday for another 4 weeks, go back for labs in December to see where my platelets are and if still dropping, she will do another lab in January and meet with me and go from there! Praying this dosage continues to lower my platelets because I am having little to no side effects! Just lower stomach pains here and there, which is gas, but I can live with it. May start taking GasX daily about an hour after my Hydroxy and see if that helps at all. Know that I am praying for each and every one of you daily for health & healing. Happy Thanksgiving to all and God bless!
Tifnie Queen

REPLY
1 reply
treeore | @treeore | Nov 20, 2022

Sherna09, I think I just lost the long response I was writing to you. In brief, I am still turning it all over. Watched the Cleveland clinic MPN conference this weekend, will have a video appt with a MAYO doctor in December and will talk to my acupuncturist in more detail next week. I can share more then and hope you will feel free to share your thinking as you maneuver your diagnosis --privately or through posting. Currently dealing with choosing Medicare for the first time and very overwhelmed with all this. Best to you!

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sherna09 | @sherna09 | Nov 20, 2022
In reply to @treeore "Hello, I'm new to this group and to the ET diagnosis, although I've had high platelet..." + (show)
@treeore

Hello, I'm new to this group and to the ET diagnosis, although I've had high platelet counts ranging in the 400s to 700s since I was in grad school in the 1990's. I am now a fairly healthy (vegetarian, daily walks, qi gong, yoga) 64 and since the platelets climbed to 830, my other blood counts have gone haywire, hence the trip to the hematologist and oncologist. They kept testing for genetic problems until they found JAK2, darn it. (I know medical knowledge is a good thing, but fear and dread play a part in disease too, no?) So after decades of fairly* symptom free years with the problem (*I do have migraines, but docs have previously told me they were unrelated to platelets), now it is "you have cancer and probably will be put on hydroxyurea, etc." I am very resistant to this because of the side effects, particularly the sun cancer risk and even more the chance of getting leukemia from the very drug that I'm taking to keep strokes at bay. I am seeing a Chinese herbalist/acupuncturist who is dealing with my symptoms from a Chinese perspective. I have my first bone marrow biopsy on Wednesday, so I will not get the full picture until the next week. I will share results with doctor and acupuncturist and try to sort out whether I am safe to explore blood health from another angle or if I must go with the western treatment. I wish there were some acupuncturists on board this forum to discuss this with. I wonder if there are Chinese specialty clinics like that? If not, I certainly need to consult with a western medicine clinic with a LOT of experience with ET and all its side branches. Be well, my ET buddies!

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How was your biopsy ? I was wondering about acupuncture ? Or Chinese herbs .. You have the same concerns as I do wish you all the best !!!

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treeore | @treeore | Nov 15, 2022

hi Colleen, Yes, I guess integrative is what I'd call my approach to healthcare--Chinese herbs and acupuncture, yoga and qi gong, supplements and herbs, and healthy eating. Working on calming, appreciating what I have. All this has been my mainstay, but it is hard to know when to break pattern and go with heavy drugs in order to prevent, according to western medicine, the onslaught of MPN progression.
Bone marrow test just verified the ET diagnosis, noting nothing else abnormal except mild PV. I keep reading about "allele burdens" but my doctor did not even seem to recognize the term, which worries me. I made an appt to do tele appt with a hematologist at Mayo Clinic in a month, will attend a Cleveland clinic zoom this weekend, and just signed up for a nutrition/inflammation study from UC Irvine. Can you hear my heart beating fast? Oh, maybe that is my poor brain.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 15, 2022
In reply to @treeore "Hello, I'm new to this group and to the ET diagnosis, although I've had high platelet..." + (show)
@treeore

Hello, I'm new to this group and to the ET diagnosis, although I've had high platelet counts ranging in the 400s to 700s since I was in grad school in the 1990's. I am now a fairly healthy (vegetarian, daily walks, qi gong, yoga) 64 and since the platelets climbed to 830, my other blood counts have gone haywire, hence the trip to the hematologist and oncologist. They kept testing for genetic problems until they found JAK2, darn it. (I know medical knowledge is a good thing, but fear and dread play a part in disease too, no?) So after decades of fairly* symptom free years with the problem (*I do have migraines, but docs have previously told me they were unrelated to platelets), now it is "you have cancer and probably will be put on hydroxyurea, etc." I am very resistant to this because of the side effects, particularly the sun cancer risk and even more the chance of getting leukemia from the very drug that I'm taking to keep strokes at bay. I am seeing a Chinese herbalist/acupuncturist who is dealing with my symptoms from a Chinese perspective. I have my first bone marrow biopsy on Wednesday, so I will not get the full picture until the next week. I will share results with doctor and acupuncturist and try to sort out whether I am safe to explore blood health from another angle or if I must go with the western treatment. I wish there were some acupuncturists on board this forum to discuss this with. I wonder if there are Chinese specialty clinics like that? If not, I certainly need to consult with a western medicine clinic with a LOT of experience with ET and all its side branches. Be well, my ET buddies!

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@treeore how did the bone marrow biopsy go? Have you heard of integrative medicine?

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biddypoppop | @biddypoppop | Nov 5, 2022
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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I have been taking hydrea for 9 years. My dose was inreased 1.5 years ago. I have recently developed pancreatitis but am trying to find out if it is a side effect of hydroxyureaa. I am more afraid of a stroke than anything else

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biddypoppop | @biddypoppop | Nov 5, 2022

I have been living with ET for several years. The C word was not used but found in my research. I have been on a low dose hydroxyurea since diagnosis. I have recently been diagnosed with pancreatitis and I discovered that this could be a side effect of hydroxyurea. I am 79 and I want to live so I will deal with this. Stroke scares the hell out of me

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