I'm new to this

How wonderful to find this community!

I'm 55, in good health but recently started to feel fatigued frequently, have tingling in my feet, and lightheadedness. My doctor discovered that my platelets were 500 the last time they were checked so retested them and now I'm at 800. I'm also JAK 2 positive. So I'm on daily aspirin.

When did you have to start on hydroxy? My doctor says it is "evil" - and I won't go on it till my platelets are 1.5million. Does that seem right?

I'm so glad to hear that you're living normal lives. My dad died of bone marrow cancer when he was 60, so this kind of freaked me out. (He had Waldenstroms macroglobulinemia).

Hope to hear from you!

Mary

4 Replies

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  • Hi.

    Welcome! I’m with the Doc!

    I don’t actually think the chemo drugs are ‘evil’ but I know that I want to hold off them for as long as I can and then I need to be convinced that the benefits outweigh the risks. The ‘magic’ number for platelets seems to be 1500 (I now hover between about 1150 and 1400) BUT there are a lot of variables - age, general health, experience of symptoms and management of other blood counts. Probably worth keeping the conversation going and certainly expressing your particular anxieties about your family history - even just for reassurance. Keep well. Xx

  • Thanks!

  • Hi Mary, welcome to our forum. You could discuss with your consultant other medications if he/she isn't keen on it. However, when you are prescribed any medication does depend on many factors, as well as your platelet counts. Your doctor will take into account your overall health, present and past, your BP, risk factors, like stroke, and any symptoms you are experiencing and how they are affecting your quality of life. The guidelines are general, so someone with a lower count than yours may be taking Hydroxycarbamide or other medication because of symptoms, or risk factors. Basically, there is no 'one size fits all' with MPNs. Best wishes. Maz

  • Thanks. I wish my doctor would have explained this to me! I appreciate your help.

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