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shenriq
@shenriq

Posts: 44
Joined: Apr 03, 2017

Essential Thrombocythemia

Posted by @shenriq, Mon, Jun 4 12:43am

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!

REPLY

Hi @shenriq
In addition to the Breast Cancer group, I included your post in the Blood Cancers group (https://connect.mayoclinic.org/group/blood-cancers-disorders/) so you can meet others living with Essential Thrombocythemia, like @ettap @misty45 @badblood @tessa @evazhang @deborahgrace and @sueg444

You might also be interested in this older discussion on Connect about ET: https://connect.mayoclinic.org/discussion/essential-thrombocythemia/

Shenriq, are you still in treatment or taking an AI for breast cancer too? How might one diagnosis affect the other?

Hi shenriq, I have been taking Hydrea for 20+ years for ET. It keeps my platelet count down to around 475 to 525 more or less. I am in El Paso but I got a second opinion at the Mayo clinic in Scotsdale. Same diagnosis. No symptoms and it hasn't morphed into leukemia. Just get my cbc every 4 months. Do not have the jak2. I keep waiting for something horrible to happen, but it seems to be under control. Best wishes, Lynda

The side effects from the AI drugs – of which I've taken all 3 – were difficult and I opted-out! It was an emotional struggle to make that decision, but my quality of life was awful. While Tamoxifen wasn't an option, I did my due diligence and have moved on to another unrelated cancer issue.

@misty45

Hi shenriq, I have been taking Hydrea for 20+ years for ET. It keeps my platelet count down to around 475 to 525 more or less. I am in El Paso but I got a second opinion at the Mayo clinic in Scotsdale. Same diagnosis. No symptoms and it hasn't morphed into leukemia. Just get my cbc every 4 months. Do not have the jak2. I keep waiting for something horrible to happen, but it seems to be under control. Best wishes, Lynda

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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!

@colleenyoung

Hi @shenriq
In addition to the Breast Cancer group, I included your post in the Blood Cancers group (https://connect.mayoclinic.org/group/blood-cancers-disorders/) so you can meet others living with Essential Thrombocythemia, like @ettap @misty45 @badblood @tessa @evazhang @deborahgrace and @sueg444

You might also be interested in this older discussion on Connect about ET: https://connect.mayoclinic.org/discussion/essential-thrombocythemia/

Shenriq, are you still in treatment or taking an AI for breast cancer too? How might one diagnosis affect the other?

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No longer taking AI drugs or actively dealing with my breast issues. Additionally, there’s no connection between the Breast concerns and my newly diagnosed (EI) blood cancer.

@shenriq

The side effects from the AI drugs – of which I've taken all 3 – were difficult and I opted-out! It was an emotional struggle to make that decision, but my quality of life was awful. While Tamoxifen wasn't an option, I did my due diligence and have moved on to another unrelated cancer issue.

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@shenriq I can imagine that was a difficult decision. Everyone is different and working with your team to find what decisions are right for you is so important. Quality of life is a massive part of decision making.

The decision to opt out of taking the AI meds was a challenging decision. Morphing from one CA treatment issue to another was disarming and forced a dramatic shift in my attention — no emotional capacity to contend with both… and I’m good with that!
Thanks for the support.

77 year old female, good health, very active. Routine blood test recently turned up high platelets .. Saw Haemotologist, now on Hydroxyurea for 2 months. No cause for high platelets is known. I have chronic sinus problem and have had two surgeries in past for polyp removal. This helps but does not cure, so deal with frequent sinus infections. Have read that an infection can cause high platelets so I am definitely looking into that .. Upcoming appointment with Otolaryngologist that did sinus surgery to check out condition of sinus problem. This was arranged by me with referral from my regular Doctor but not something either she nor the blood specialist would even listen to. This may not turn up anything but I think it is worth checking. Don't want to take Hydroxyurea forever if not necessary.

@huronshores

77 year old female, good health, very active. Routine blood test recently turned up high platelets .. Saw Haemotologist, now on Hydroxyurea for 2 months. No cause for high platelets is known. I have chronic sinus problem and have had two surgeries in past for polyp removal. This helps but does not cure, so deal with frequent sinus infections. Have read that an infection can cause high platelets so I am definitely looking into that .. Upcoming appointment with Otolaryngologist that did sinus surgery to check out condition of sinus problem. This was arranged by me with referral from my regular Doctor but not something either she nor the blood specialist would even listen to. This may not turn up anything but I think it is worth checking. Don't want to take Hydroxyurea forever if not necessary.

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Welcome to Connect, @huronshores
Kudos to you for doing your research and advocating for your care. Please report back what you find out after your appointment with the Otolaryngologist.

Do you experience side effects from hydroxyurea?

@huronshores

77 year old female, good health, very active. Routine blood test recently turned up high platelets .. Saw Haemotologist, now on Hydroxyurea for 2 months. No cause for high platelets is known. I have chronic sinus problem and have had two surgeries in past for polyp removal. This helps but does not cure, so deal with frequent sinus infections. Have read that an infection can cause high platelets so I am definitely looking into that .. Upcoming appointment with Otolaryngologist that did sinus surgery to check out condition of sinus problem. This was arranged by me with referral from my regular Doctor but not something either she nor the blood specialist would even listen to. This may not turn up anything but I think it is worth checking. Don't want to take Hydroxyurea forever if not necessary.

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A bit more tired than usual, running to bathroom (bladder) a lot. Not sure what long term effects may be.

For me, ET has meant being on Hydrea for the past 20+ years, getting a cbc every 3 months or so, and checking to make sure I have no spleen enlargement. It is a strange blood disorder because I have no symptoms that I'm aware of, however if I cut back on the Hydrea, then my platelet count zooms back up. So I have had to continue taking it and probably always will. Docs all say I will have a stroke if I don't take it and that if I don't take it, it is at my own peril.

Hi everybody, I'm here like you because i like to know people that is living with ET. I'm 32 years old and I was diagnosed ET 2 years ago. After that I'm taking Hydrea each day. Same @misty45 I have no symptoms. I'm grief because I'm woman and I wonder if I can be pregnant despite my condition. I'm trying to get information with doctors, cases of ET womens that got baby but I don't have certainty if it can be a big risk for me and for my baby. If you have bibliography of science cases let me know. Good luck and i hope we can share our experiences about ET.

@kroolivera

Hi everybody, I'm here like you because i like to know people that is living with ET. I'm 32 years old and I was diagnosed ET 2 years ago. After that I'm taking Hydrea each day. Same @misty45 I have no symptoms. I'm grief because I'm woman and I wonder if I can be pregnant despite my condition. I'm trying to get information with doctors, cases of ET womens that got baby but I don't have certainty if it can be a big risk for me and for my baby. If you have bibliography of science cases let me know. Good luck and i hope we can share our experiences about ET.

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Hi @kroolivera. You bring up a valid concern regarding your diagnosis and childbearing. As it just so happens, I was working on a clotting disorders and pregnancy blog post on our Hematology Connect Page. The story just went live, you can check it out here, https://connect.mayoclinic.org/newsfeed-post/clotting-disorders-pregnancy-what-you-need-to-know/. While we did not discuss Essential Thrombocythemia directly, you may find some of the information relevant and useful.

@kroolivera, if you don't mind sharing, have you discussed pregnancy with your hematologist?

@kroolivera

Hi everybody, I'm here like you because i like to know people that is living with ET. I'm 32 years old and I was diagnosed ET 2 years ago. After that I'm taking Hydrea each day. Same @misty45 I have no symptoms. I'm grief because I'm woman and I wonder if I can be pregnant despite my condition. I'm trying to get information with doctors, cases of ET womens that got baby but I don't have certainty if it can be a big risk for me and for my baby. If you have bibliography of science cases let me know. Good luck and i hope we can share our experiences about ET.

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Thank you for your response and link for further info.  I am very sure I raised no mention of nor concerns about pregnancy, as I am past that point in my life.  I have an appointment scheduled on 7/9 at Sloan Kettering for a second opinion, to have the top guns weigh in — continue my quest for facts and treatment.Many thanks for your outreach.Best always,

Susan Henriques-Payne

@misty45

Hi shenriq, I have been taking Hydrea for 20+ years for ET. It keeps my platelet count down to around 475 to 525 more or less. I am in El Paso but I got a second opinion at the Mayo clinic in Scotsdale. Same diagnosis. No symptoms and it hasn't morphed into leukemia. Just get my cbc every 4 months. Do not have the jak2. I keep waiting for something horrible to happen, but it seems to be under control. Best wishes, Lynda

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Hi Misty45,
Given your report out on Hydrea & the fact that you’ve been talking it for 20 years, do you take it daily? Do you anticipate take my it for the rest of your life? While managing it for 2 decades, have you had any “episodes” (stroke, clot or heart attack)? Of course I hope not. I am asking to get a sense of the drug’s efficency?
Deeply grateful that you’re forthcoming and willing to share details of your personal experience. Thank you always.

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