2 replies to this topic

[jbinsd]

I just posted this in the "Newly diagnosed" board.  Would love to see if you all have had similar experiences...

http://community.lls.org/thread/19417

[Susan61]

Hi:  Now that you have been diagnosed, join us on this discussion board.  You have a lot of very good advice to share, and have learned a lot in a short time.  Attitude and Positive Thinking along with the right doctor is the beginning of beating this disease.

    We have all done what you did at being Newly Diagnosed. It is just typical to do all the worrying and What If's, but as time goes by you find out more and more about how treatable this form of Leukemia is. It keeps you going from day to day.

   I was diagnosed in 1998, and when I think back to the day I was first told I had CML, and how I handled it is a day we never forget.  You can remember every detail and every word, and no idea what to expect.  I have mentioned it many times in my posts that I had no TKI at first.  Now everyone has these TKI drugs available which has been a real miracle in the fight to beat CML.

  Just share with other newbies, who are scared and afraid of the unknown.  Share and ask questions from others who know exactly what you are experiencing.  We all listen and help one another every day, and it make the battle so much easier in most cases.

   Welcome to our Group.. Please join in anytime.

Susan 61

[jbinsd]

Thanks Susan!  I feel the same way about the initial diagnosis - both times I found out I had cancer actually (and when my wife found out).  It's amazing how it gets burned into one's memory so clearly, although given the timing of your diagnosis it must have been even more scary.

I actually joined the group a while back and posted a question.  People were really great about responding.  I wasn't actually totally clear on role of the newly diagnosed community other than that is the first area that some folks will look (that's what I did) and thought it might be helpful to post it there to catch new folks whose heads were spinning.  But I will post that type of thing here in the future - it makes more sense.

Thanks again, Susan!

-jb