MPN Voice

Here's what the BMB said

I met with my CLL and MPN experts this past week to learn the results of my bone marrow biopsy. My myelofibrosis is still there but not aggressive. Apparently 10mg of Jakafi 2x a day helps hold it steady. Genetic factors are ok,. My CLL is there too but after 19 years not doing much. Only issue is platelets, bounce between 70,000 and now 80,000. Occasional purple bruising. So maybe the platelets are not super high quality. (Slightly enlarged spleen but still probably eat too much!) Anyway. feel good and the bottom line is stay the course and live life. So you guys are stuck with me just now :)

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Very pleased for you , take care, Sue

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Thanks!

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Great news Andrew. Bruddery

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Thank you!

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Glad to hear it went well Andrew there is always relief when things are keeping stable. Well done!

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Thanks. I am definitely into "stable"!

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Wonderful news for you long may it last.

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Thank you!

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Good news! 👌

Best wishes

Lizzie

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Thanks Lizzie!

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Such good news xxx

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Thanks. My wife Esther (and I) were relieved.

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Fab news

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Thanks Shelly!

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stable is great, dabrat

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Stable is a fine word

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Please for you. Take care x

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Thanks Karen

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Andrew

Great news for you!

I was diagnosed in October 20015 with Primary Myelofibrosis. Being 64, and never having been seriously ill a day in my life, the diagnosis was quite a shock to my psyche, as the Dr. gave me the diagnosis, and bluntly told me to look it up on the internet !

Your courage, and fantastic web site has helped me to put this disease, and my future in perspective. I am positive about every day, and looking forward to life.

I went for a second opinion this month, and was very fortunate to find Dr. Brady Stein. I had my initial consult with him. My wife , and I left that appointment knowing that I am in good hands, and lucky to have found a kind, caring, young Doctor with a mission.

Bruce

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I LOVE Brady and he is very dedicated to us. The world will be stuck with both of us for quite a while. All the best and cheated to Chicago myself now, for other reasons.

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We really like 'being stuck with you', so please go on sticking fast and so encouraged to read your latest news. Very best wishes, Tinkerbell13

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Thanks!

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Good for you Andrew. I am on the same dose as you and everything is holding steady and spleen not noticeable!

Life is good. Skied at Christmas and next month as well.

Best wishes from Michael and to everyone else on here

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Thanks! My spleen is palpable, about 7 cm's but doesn't bug me. They just told me no contact sports. At 65, that's ok.

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Hi Andrew I'm so pleased to hear your good news , and long may it last ,

Your like a god to me & others on here

I'm delighted your sticking with us ,

We are one big family on here ,

It sure helped me 3 years ago when I was dignosed with ET Jak2 Positive after a TIA with very little knowledge of this disease ,

Can't thank you enough

Pam X

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All the best to you Pam. My MF diagnosis followed having two DVTs which were scary. While my speen is about 7 cm it does;t both me and I still eat too well :)

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What a great post! I enjoyed hearing how you are doing, and the sheer positiveness of your news. I'm glad to hear you are feeling good too. I found it helpful to hear about the role of Jakafi in your status. I always enjoy your coverage, so good to hear how you are doing, thank you for sharing with us all. It gives such a boost to read good news stories.

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Happy to give everyone a boost. I felt "boosted" leaving the doc's office :). all the best to you!

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Yeah sounds like a top result to me that Andrew, I would have opted to stay on the drug route I guess but things were moving on a pace and the Rux didnt quite cut the mustard. . . Well done. Chris

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Fortunately there are other medicines in development and I believe more of us will be helped to live well - in the near term. Just have the right doc on your side!

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That's an encouraging message and good to see a positive response.

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I am so glad. We have never met but I think of you as my wise friend. I really appreciate what you do for us all. Your work and the information you provide has helped me feel that I can play a full part in managing my condition. So to hear that you are still in there cheers me. For you and selfishly for me.

Susan

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Good news for you so pleased

Caz

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How are things

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Glad to hear we stuck with you and know it is scary when you have mf diagnosis even if non agressive at present I also have mf similar to yourself if you want to chat always here for you take care michelle

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