Well, first and foremost, I have some GREAT news:

This week’s platelet count was 439,000!

Yes, I am still grinning like a maniac.  

Remember, my original count was 863,000.  I have been on Hydrea, 2000mg/day for 5 weeks now.  My next appointment is Tuesday, with my Hematologist.  I am hoping to be able to reduce my dosage to a maintenance dose soon, to reduce some of the side effects I have been having with the Hydrea.  We’ll see what he says about that on Tuesday. 

I also have a couple other things to talk to him about.  They are kind of personal…well, okay, embarrassing is more like it…but if he tells me that they are associated with the ET I will share them then just for educational puroposes.  I also want to talk to him about a couple subjects that I would like to write about here in my blog.  I would like his input and guidance on those posts, as well as hoping he can point me in the direction of some additional, and reliable, resources for information.

The last thing that I wanted to mention is that I was just turned on to a fantastic website about MPD’s.  A fellow poster on the ET Forum that I have posted a link to shared the link to this site.  The site is run by Guy’s and St Thomas’ hospitals in London.  The address is http://www.mpd-support.com/index.htm.  I will also add it to my Helpful Links post.


Okay, I know this is a short one, but I hope to have more during the next week.  I really want to write some posts addressing common questions and concerns about ET.  I just want to make sure they are based on accurate info first.


Take care, everyone!



~ by julie70 on February 14, 2009.

6 Responses to “Updates”

  1. Julie, this IS great news. Best of luck at your appt tuesday. Hope you get more answers!

  2. Julie, just diagnosed, also live in Michigan. Still reading everything I can to try to understand what I’m up against. I’ve been on Hydrea for 10 days and am VERY tired (although I already was) and don’t have much appetite (luckily I have a few pounds to spare). My brother actually found your blog and told me about it. I’m very interested to see where you (and I) go from here. Good luck to both of us!

  3. Just passing by.Btw, your website have great content!


  4. Mike, thank you very much 🙂

    Mimi, how are you doing now? I would like to keep in touch and hear how you are doing :). Have you checked out the MPD Foundation (http://www.mpdfoundation.org/)? It is a great organization, and sometimes they hold meetings in Michigan for MPD patients.

    Pat, how has Brad been doing on the Hu?

  5. I am a 79 year old woman recently diagnosed with E.T. My doctor wants me to go on HU with baby aspirin, I am scared of the side effects. I have no symptoms of importance and am taking baby aspirin only for now till I have symptoms. Is this wise or not?

    • Hi Marlene,
      Well, I am not a doctor. So I can’t tell you whether you should take your doctor’s advice or not. However, if you are uncomfortable with the course of action that this doctor wants to take, by all means, get a second opinion :).
      Different patients react differently to HU. There is no way to know what – if any – side effects you will have from HU until you start taking it. You may find that you have no side effects at all and are very comfortable on the medication.
      Make an appointment to talk with your doctor about why they want you to take the HU, and to address your concerns. Ask all of your questions, and make sure your concerns are heard. If you don’t feel you are being heard, you may want to consider a different doctor. If you are ‘heard’, but still uncomfortable with your doctor’s decision, get a second opinion. You may find that after talking about it with your doctor, you feel much better about taking HU. But don’t be afraid to ask and talk about these things. It is so important that we do this. And a good doctor is not afraid of a patient who asks questions, is involved in their care, and wants to learn about their illness.
      Good luck, and please let me know how it goes 🙂

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