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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@koryw208

I was diagnosed with ET (CALR mutation) and acquired Von Willebrand Syndrome in July of this year. After a routine wellness apt with my primary care doctor, my platelets were almost 2900. I had no idea what it even meant. After all the tests and bone marrow biopsy came the first diagnosis of ET. In retrospect, I was having symptoms but didn't make any connections...weird bruising, nose bleeds, tingling and numbness in my hands, swelling in my lower legs, headaches, etc. After my bone marrow biopsy bled for two days at the site. Not just slightly but continual bleeding and non stop. A trip to the ER was told to apply continual pressure. The next day, still the same continual bleeding. Went back to the ER (it was the weekend and we don't have an urgent care) and finally they sutured it closed. This all didn't make sense. I was given a diagnosis that was supposed to cause clotting, why am I bleeding so much??? Two weeks later I had to have a bc implant removed. The same issue, excessive bleeding and needed sutures to stop it. More testing and it turns out that I have acquired Von Willebrand Syndrome as well. WHAT? A clotting disorder with an excessive bleeding disorder made no sense. I lack a protein that allows my blood to clot. SOOO counter intuitive. Fast forward to 5 months later and I've been on Hydrea for 4 months now. Starting with 500mg, then 1000mg and now at 1500mg plus iron supplement to combat the caused anemia. My platelets are down to 1000 now but probably won't go any lower with meds because my wbc have dropped too low. It's a weird dance now to keep all my numbers in check. We're not quite there yet. I have a great doctor that I am confident with but it has taken a lot of patience. Blood draws every two weeks for the forseable future and trying to stay away from anything where I might injure myself. Hydrea does cause a lot of fatigue and my GI tract is definitely not happy but I guess it's a small price to pay for keeping my numbers (close to being) in check. Two rare chronic cards (cancer??) but fortunately neither were passed on to my kids since one is a mutation and one is acquired. Staying positive and appreciating all the good in life 🙂

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I pray for your healing .. The symptoms you described I have are the same as mine but no bleeding like that just when I wake up my pillow case has some kind of bleeding from my mouth I assume. Tingling my n my hands swelling but I get swelling pain all over my body that’s how I can describe it .. Wishing you the best as I also take hydrea generic it makes me so tired … 🙏🏼

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I was diagnosed with ET (CALR mutation) and acquired Von Willebrand Syndrome in July of this year. After a routine wellness apt with my primary care doctor, my platelets were almost 2900. I had no idea what it even meant. After all the tests and bone marrow biopsy came the first diagnosis of ET. In retrospect, I was having symptoms but didn't make any connections...weird bruising, nose bleeds, tingling and numbness in my hands, swelling in my lower legs, headaches, etc. After my bone marrow biopsy bled for two days at the site. Not just slightly but continual bleeding and non stop. A trip to the ER was told to apply continual pressure. The next day, still the same continual bleeding. Went back to the ER (it was the weekend and we don't have an urgent care) and finally they sutured it closed. This all didn't make sense. I was given a diagnosis that was supposed to cause clotting, why am I bleeding so much??? Two weeks later I had to have a bc implant removed. The same issue, excessive bleeding and needed sutures to stop it. More testing and it turns out that I have acquired Von Willebrand Syndrome as well. WHAT? A clotting disorder with an excessive bleeding disorder made no sense. I lack a protein that allows my blood to clot. SOOO counter intuitive. Fast forward to 5 months later and I've been on Hydrea for 4 months now. Starting with 500mg, then 1000mg and now at 1500mg plus iron supplement to combat the caused anemia. My platelets are down to 1000 now but probably won't go any lower with meds because my wbc have dropped too low. It's a weird dance now to keep all my numbers in check. We're not quite there yet. I have a great doctor that I am confident with but it has taken a lot of patience. Blood draws every two weeks for the forseable future and trying to stay away from anything where I might injure myself. Hydrea does cause a lot of fatigue and my GI tract is definitely not happy but I guess it's a small price to pay for keeping my numbers (close to being) in check. Two rare chronic cards (cancer??) but fortunately neither were passed on to my kids since one is a mutation and one is acquired. Staying positive and appreciating all the good in life 🙂

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@pumpkin1

Colleen, I have no symptoms other than some fatigue. I am taking aspirin as prescribed by Dr. My concern about starting Hydrea is how it will affect my quality of life at this stage. If I had some other more obvious symptoms that debilitated me, I would consider it perhaps. But, truthfully, I feel very lucky to have lived to 80 with relatively good health, and I will be very thankful for whatever time I have left without taking a chemo drug that could affect my every day life. If I were in my 60s, I might feel differently.

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My only thought is that if you don't keep your count down, you may be more likely to have a stroke, at least that's what my Dr. told me. I guess it's a life choice. I didn't like Hydroxy when I took it so my my Dr. put me on anagrelide. My body adjusted well to that. That may be an option for you.
Best wishes to you!

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@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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I started with Hydroxy 14 years ago but because of the side effects I changed to Anagrelide. It has kept my count low but I have recently had to increase to one more 3-4 days a week. I take 3-4 .5 mg. daily. On the days I take the 4th one, I am tired and my body feels aciditic. It may adjust as time passes. Best wishes to you!

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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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@cajunqueen

Hey there! A little update for you all....after taking 500 mg of Hydroxyurea daily for 3 weeks, my platelets came down around 60 points, but it is still in the 780 range, so my Hematologist is having me take 500 mg 6 days a week and 1000 mg once a week (on Saturdays) for 4 weeks and will do labs in November to see where my platelets are again. She will then tweak the meds again, depending on what my body does with the extra dose once a week. Thank you for your comments and health updates and 'medical drama', as Lori stated above! Let's continue posting about our journeys in this season of our lives to help each other with positive vibes and shining His light in all that we do, because He has each and every one of us in the palm of His hands.
Blessings,
Tifnie Queen

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Hemos seem to be better at HU dosing. Someone in my cancer group years ago was hit with a high dose of HU right off the bat because his platelets were over 1,000. He had leg pains and other distress and ended up in the ER. He was fine as soon as the dose was lowered.

The thinking now seems to be to start patients on a lower dose, maybe 500 mg 3x per week, and increase as needed.

I have CALR mutation. Started HU 5 years ago. Platelets went from a high of 800s to 600s over a year at 500 mg per day. Next year it was upped to 500 mg per day plus an extra dose 3x per week. Stable in the 400s for four years now.

Less fatigue, fewer headaches and visual distortions on the HU. I do yoga and exercise bike (my bike to nowhere) to try to keep circ going. I am 68, with onset at age 55.

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@colleenyoung

@sherna09, welcome. Are you able to wean off coffee since it is a trigger for you?

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Yes but I do crave it at times .

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@colleenyoung

Welcome, @penmueller1. It looks like you are signed in because you were able to post. 🙂

What are your concerns about starting Hydrea? What symptoms of ET do you have?

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Colleen, I have no symptoms other than some fatigue. I am taking aspirin as prescribed by Dr. My concern about starting Hydrea is how it will affect my quality of life at this stage. If I had some other more obvious symptoms that debilitated me, I would consider it perhaps. But, truthfully, I feel very lucky to have lived to 80 with relatively good health, and I will be very thankful for whatever time I have left without taking a chemo drug that could affect my every day life. If I were in my 60s, I might feel differently.

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@sherna09

Hi my name is Sylvia and I also was diagnosed with high blood platelets about I think 6 months again . Dr also prescribed hydroxy urea generic brand name (hydrae)I had about 1750high platelets It’s down around 540 at one point 380 . I am so confused as to be taking this medication . I asked what caused this to appear and she said she does not know . I notice that when I drink regular sugar , coffee it triggers my body and I get pain all over like kind of swelling pain if that makes any sense . I drink baby aspirin as well . I sometimes think I need a second opinion for I’m afraid taking hydrea might give me another form of cancer … Mysty I live in Austin now but my home town is El Paso …I’m here for you all .. u all are not alone ..

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@sherna09, welcome. Are you able to wean off coffee since it is a trigger for you?

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@pumpkin1

Not certain this is going to post as I still don’t have a password , so this will be brief. I am 80 yrs old and this year was diagnosed with ET. Platelet count has varied between 525 and 625 this past year. My hematologist wanted me to take Hydrea, 500 mg twice a day. I am hesitant to start at this stage of my life and also because my platelet count is not as high as many. I am told I have the JAK2. I have not had a bone marrow biopsy and it hasn’t been suggested. Any thoughts?

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Welcome, @penmueller1. It looks like you are signed in because you were able to post. 🙂

What are your concerns about starting Hydrea? What symptoms of ET do you have?

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