Thrombocythemia and need neck surgery: Will surgery make it worse?

Posted by blondie65 @blondie65, Sep 1, 2023

I was recently diagnosed with Thyrombocythemia my platelets are over 900. The Dr. put me on a low dose aspirin. He said when it reaches over 1000 he will put me on a drug. I’m also having neck surgery on Oct 3rd on C4 thru C7. I’m scared, will the surgery make the Thrombocythemia worse?

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I have small itchy bumps appearing frequently on my arms and legs. They are almost invisible but you can feel them under the skin. At first I thought I had mosquito bites, but there don’t seem to be any around these days, so I am wondering if these might be a side effect of the hydroxyurea? Does anyone else have these unexplained itchy little bumps?

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@rjgregory440

I would consult your surgeon now about this...it is my understanding that invasive surgery is not wise with a platelet count as high as yours. The surgery won't make your blood count higher but the high platelet count can cause thrombosis ( blood clot / stroke). If you do nothing now, at your pre-op appointment any surgeon with a real degree would not perform surgery on a patient with a platelet count that high. Please consult a hematologist and your neurosurgeon immediately.

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On 1/26/22, I was diagnosed with Essential Thrombocytosis after my doctor ran a CBC. My count was 922 (thousand). She called me into the office and said I needed to start a low dose aspirin immediately, she ran my blood again, and immediately referred me to a hematologist. My platelet level this second time was over 1,045 (thousand). Shortly after this but before I saw the hematologist, I was scheduled for a colonoscopy and the doctor was concerned, saying that I was at high risk for clotting.
The hematologist immediately put me on Hydroxy. Please call the surgeon now and be proactive and request a referral to a hematologist. If your doctor refuses, find a new doctor.

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@kapow

I have small itchy bumps appearing frequently on my arms and legs. They are almost invisible but you can feel them under the skin. At first I thought I had mosquito bites, but there don’t seem to be any around these days, so I am wondering if these might be a side effect of the hydroxyurea? Does anyone else have these unexplained itchy little bumps?

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I’ve been on Hydroxy over a year and no bumps. Maybe call your hematologist. If this isn’t a side affect, try your regular dr.

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Hello, I had unexpected surgery last year (my platlets had been up to 920 but are now close to normal with HU and aspirin). I just made sure to have a conversation with both my hematologist and and surgeon about my ET and asked what to look for during recovery that would be a possible cause for concern. Also if something during recovery is not feeling "right" I reach out to both doctors to make sure it is nothing to be concerned about. Listen to your body!

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Re itchy bumps: ET jacks up histamine levels. I have more skin irritation, asthma, and rosacea flare-ups than I did when I was younger. Adhesive from non-latex bandaids can cause itching and even blistering if left on too long. Docs just wave this away as aging skin. It has helped a lot to replace laundry and personal care products with hypoallergenic alternatives, slather on moisurizer, and keep the Benadryl and inhalers handy.

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@nohrt4me

Re itchy bumps: ET jacks up histamine levels. I have more skin irritation, asthma, and rosacea flare-ups than I did when I was younger. Adhesive from non-latex bandaids can cause itching and even blistering if left on too long. Docs just wave this away as aging skin. It has helped a lot to replace laundry and personal care products with hypoallergenic alternatives, slather on moisurizer, and keep the Benadryl and inhalers handy.

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I agree with the bandaid I am also allergic to them., always on my notes I once blistered badly after my spine op.

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@nohrt4me

Re itchy bumps: ET jacks up histamine levels. I have more skin irritation, asthma, and rosacea flare-ups than I did when I was younger. Adhesive from non-latex bandaids can cause itching and even blistering if left on too long. Docs just wave this away as aging skin. It has helped a lot to replace laundry and personal care products with hypoallergenic alternatives, slather on moisurizer, and keep the Benadryl and inhalers handy.

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Thank you for this info. I didn’t realize that histamine levels were affected. I too have asthma, and find that I am out of breath more frequently than in the past. Maybe all related.

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I was diagnosed with ET (Jak2), about 2 years ago. My platelet count was 550 and doc put me on low dose aspirin and wanted me to start Hydroxy. After I did much research, and hearing some of the side effects of this chemo drug, I decided not to take it (probably much to the chagrin of my doctors). I am 81 yrs. old and otherwise in good health. Since my diagnose, my platelet count has stayed in the mid 500s. I have traveled extensively, enjoyed my grandchildren, and have not been sick, other than a case of covid. I am wondering if anyone else with ET has chosen not to take a chemo drug, especially if platelet # isn’t excessively high (i.e., 500s to 600s). I am not advocating that one should not take hydroxyurea, as it is a personal decision. I am just curious to know if anyone else has chosen not to take it, and how they are doing.

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@pumpkin1

I was diagnosed with ET (Jak2), about 2 years ago. My platelet count was 550 and doc put me on low dose aspirin and wanted me to start Hydroxy. After I did much research, and hearing some of the side effects of this chemo drug, I decided not to take it (probably much to the chagrin of my doctors). I am 81 yrs. old and otherwise in good health. Since my diagnose, my platelet count has stayed in the mid 500s. I have traveled extensively, enjoyed my grandchildren, and have not been sick, other than a case of covid. I am wondering if anyone else with ET has chosen not to take a chemo drug, especially if platelet # isn’t excessively high (i.e., 500s to 600s). I am not advocating that one should not take hydroxyurea, as it is a personal decision. I am just curious to know if anyone else has chosen not to take it, and how they are doing.

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I was diagnosed with ET in May 2023 with a platlet count of 556. I am 66 and asymptomatic.
My Dr advised 81 mg aspirin along with Hydrea 500mg twice a week ( a baby dose according to him ).
After doing my research I have decided to adhere to the daily aspirin, eliminate certain foods and refrain from regular alcohol consumption.
I am taking the management of ET in direct relationship to my blood platlet count every 8 weeks - a wait and see attitude.
I am also fearful of Hydrea and at this point in my diagnosis I do not agree the therapeutic benefits outweigh the carcinogenic impact.

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@pumpkin1

I was diagnosed with ET (Jak2), about 2 years ago. My platelet count was 550 and doc put me on low dose aspirin and wanted me to start Hydroxy. After I did much research, and hearing some of the side effects of this chemo drug, I decided not to take it (probably much to the chagrin of my doctors). I am 81 yrs. old and otherwise in good health. Since my diagnose, my platelet count has stayed in the mid 500s. I have traveled extensively, enjoyed my grandchildren, and have not been sick, other than a case of covid. I am wondering if anyone else with ET has chosen not to take a chemo drug, especially if platelet # isn’t excessively high (i.e., 500s to 600s). I am not advocating that one should not take hydroxyurea, as it is a personal decision. I am just curious to know if anyone else has chosen not to take it, and how they are doing.

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@pumpkin1
I was diagnosed a year and a half ago with ET, Jak 2 positive, and platelets in the high 400’s. Because of my age (69 at the time) the hemo tried to put me on Hydroxyurea right away-with not even mentioning aspirin. I refused and found another hemo who put me on 2 low-dose aspirin a day and no Hydroxyurea until I reach the 600 mark. I’m doing fine and just living my life! I’m also trying to drink pomegranate juice (although difficult for me), eat cucumbers, and other platelet-lowering foods (?) After numbers climbing over the last year, my most recent CBC showed that my platelet count went down from 567 to 524!
Hang in there and do your own research. Blessings and best of luck to you.

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