Essential Thrombocytosis

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RE: Essential Thrombocythemia

by rshah on Wed Jul 01, 2015 07:56 PM

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Thanks barry for prompt reply.

She is under good haemotologist. My concern was hydroxyurea will be part of her life. In that case , how should we arrest rbc falling. Her platelet count hover arnd 5 recently.

Need your guidance

Thanks!

RE: Essential Thrombocythemia

by boisid on Wed Jul 01, 2015 08:32 PM

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While I understand your concern, it would not be appropriate to give you medical advice as I am not a doctor.

What I wrote before is my experience and learning.

Keep conferring with her hemotologist, and best of luck and health.

Bestr regards

Barry

RE: Essential Thrombocythemia

by rshah on Wed Jul 01, 2015 08:56 PM

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Thanks Barry!

Her Haemoglobin is 10.2 currently

RE: Essential Thrombocythemia

by moving on Wed Jul 01, 2015 09:21 PM

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Actually, I had a small tumor removed from my wrist a couple of years after I was diagnosed with essential thrombocythemia.  My oncologist didn't feel that there would be a problem.  I thought it was strange that my surgeon knew almost nothing about E.T., but the surgery sent well and I had no complications.  At the time I was taking 1,000/1,500 of hydrea.  I've also had colon polyps removed and all went well with that also.

I feel it's always best to listen my oncologist and follow his advice.  I would hope you do the same.

RE: Essential Thrombocythemia

by Otherworlder on Thu Jul 02, 2015 01:12 PM

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On Jul 01, 2015 7:44 PM CindyN wrote:

I haven't been on here in a while but got a new thing going on with my daughter. Her dentist said she need her wisdom teeth pulled. She is 19 now. So went to oral surgeron and of course talked to her onocologist and set up appt. The oral surgeron of course after x-ray said they need to come out. He onocologist wanted to run some blood work and talk to local dentist. They decided it was more of a risk to have them removed and are just going to watch and see how they do. Her platelets run 1.5 - 1.8 and she is on no meds. Dr. Tefferi at Mayo Clinic in Rochester took her of the Hydrea after she was on it for three years. Have any of you had a surgery not done because of this? Just don't know what to think about this. I haven't spoken to the oral surgeon since the local dentist and her dr decided to not do it.

Cindy,

Most doctors who have minimal experience with MPNs usually see that scary high platelet count and refuse to do any kind of surgery because it usually means a high risk of either bleeding or clots (surgeons hate the perception of high risk). The only way most doctors know to handle it is to bring the platelet count down prior to surgery, and most will not proceed without doing that.

You can get around this a few ways, hopefully.

First, make sure your daughter gets (or has already had) a test done for acquired von Willebrand disease. This is to determine if her ET actually puts her at a higher risk of bleeding when her platelets are elevated. If the test comes back negative, you can advise the surgeons that the bleeding risk is minimal with evidence to back it up.

Second, you can offer to put her back on Hydrea until her platelets come down to a more normal range. While most data suggests actual platelet count is not predictive of clots in people with MPNs, it's still a "high risk" item the surgeon can then check off his list. To most doctors, high platelet count = clot risk, so you can mitigate this fear temporarily with Hydrea until after the surgery.

Third, you should consult with Tefferi about this if you haven't already. He can tell you whether he agrees with their conclusions. If he doesn't, chances are good he will either reach out to the oral surgeon to clarify a lot of this, or have a member of his staff do it. Most specialists are usually happy to assist with this sort of roadblock.

Good luck.

RE: Essential Thrombocythemia

by rshah on Thu Jul 02, 2015 04:26 PM

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Hi Otherwolder,

I had posted some day bck regarding my mom diagonsed with ET. Now, she is on hydroxyurea , 1000 mg a day. Her platelets hovers around 4.5. However, RBC count is getting decreaed to 3.5 and WBC remained constant.

Need ur advice if any light u can throw on it.

Thanks ,Regards!

RE: Essential Thrombocythemia

by Karenann12342 on Thu Jul 02, 2015 07:36 PM

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Was wondering if anyone takes Arylin instead of hydroxyurea?  I have been on it for quite a few years.  No one mentions taking it.

RE: Essential Thrombocythemia

by boisid on Thu Jul 02, 2015 09:17 PM

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On Jul 02, 2015 7:36 PM Karenann12342 wrote:

Was wondering if anyone takes Arylin instead of hydroxyurea?  I have been on it for quite a few years.  No one mentions taking it.

Hi Karen,

Are you sure that's the nname of the drug you use. Do you mean Anagrelide ?

Best regards

Barry

RE: Essential Thrombocythemia

by moving on Thu Jul 02, 2015 11:00 PM

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Hi Karenann,

I began my journey with E.T. by taking 4 Arylin daily, but it did little to control my platlet count and I experienced terrible side effects.  So, my oncologist switched me to hydrea .. 1,000 and 1,500 mg daily, alternating days.  I have "sometimes" have better outcomes with hydrea, but my platlet counts continues to jump/fall on a regular basis. 

Moving

 

RE: Essential Thrombocythemia

by Karenann12342 on Thu Jul 02, 2015 11:30 PM

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I meant agrylin.  Anangrelide  the generic.  Misspelled

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