6 replies to this topic

[GerryL]

Interesting BLOG http://marycrocco.wordpress.com/

[Susan61]

Hi Gerry:  I am glad you posted that for people to read.  Especially all the newcomers we have gotten recently.

I am not good at explaining all the intricate lab terms like others, and I always mention that.

I just want to help people to relax, knowing how treatable CML is.

When I was diagnosed the doctor walked into the room after my BMB to give me the results.  He said the Bad News is you have Leukemia, but the Good News is that you have one that is very treatable.  You figure that was back in 1998.

Susan

[GerryL]

Hi Susan,

As I've mentioned previously - your help to the newbies and also to those of us that have been on the road a little while is invaluable. 

[Susan61]

Hi Gerry:  I just say all the things that I needed someone to say to me when I was diagnosed.  None of us knew Anything or what the future would hold.  Truthfully, I did not plan on a future.  The worse thing for me was that there was no TKI available yet when the Interferon and Ara-C did not work for me.  You just do not forget those days ever.

I had to do just Hydrea for a whole year, until I got into the trial for the Gleevec.  I had doctors sending me all over the place to get ready for a BMT.

     I talk about my Faith in God a lot, because that is what got me through those days back then.  My Faith is what keeps me going even to this day.

    Glad your doing well, and everyone else who is kicking the butt of CML.

    I hope all our newbies read what you posted and see what all the advances in treatment has done through the years.

    Hugs

    Susan

[GerryL]

Hi Susan,

Josie gave us a rundown on what it was like to be on Interferon whilst she was trying to get pregnant, I'm grateful that they discovered Gleevec.

I'm very glad you pushed to get on the Gleevec trial. Your input on this board would be sadly missed if you hadn't been able to get on that trial.

Hugs to you to.

Gerry

[0vercast]

Thanks for the link to the book review. It looks good, so I purchased it on Ama*** for fairly cheap.

[Susan61]

Hi Gerry:  I am glad that I can be of help when someone just does not know where to turn next.  We have a great group here, and I always tell everyone that someone will have a answer.  We all go through different things with these different TKI drugs, and then we have the people like Trey who has studied CML thoroughly since his diagnosis.

Bottom line is we always look to him for the complicated answers that we ourselves might not understand.

    I always tell people that its not all bad,and that we all still find humor in our life.  I love to hear the stories Billie and others mention.  IT just lifts you up on what could have been a otherwise bad day.

   I have been on other CML websites that were so gloomy.  You could not discuss just a normal day. IT always  had to be about CML, or your post was removed.

  People need to know that we can live a normal and long life now with the way CML is treated, and find enjoyment in life as well.

  I think we have all made some real good friends by being able to share anything that is going on with us.

Susan