CML anniversary

[Guest guest]

Dear Group,

As we were walking into a restaurant last night, I asked Jimmy if he knew

the signifance of the date and he said it was Friday, July 25. I had to remind

him that is was my 12th CML anniversary. My mind and my feelings kept going back

to that infamous date and the fear it struck in all of our hearts. It was like a

delayed death sentence. Gradually over the years, more drugs appeared that gave

us hope and as doctors learned more about the disease and the treatment, they

learned about PK levels and new testing equipment that was better at testing and

getting reliable results, how better to prescribe the right doses, although all

doctors haven't caught up to that stage yet. When you are diagnosed, it comes

as a surprise and you don't know anything about CML. Gleevec became the drug of

choice until some of us were either intolerant or unresponsive. So the search

was on for more drugs that we could tolerate.

I would like to say to all newcomers, to work hard at fighting the disease

by arming yourself with knowledge, Find a doctor you are comfortable with and

don't give up. We all have good days and bad days and our results can sometimes

be baffling, leading us to think we are loosing our remission or something is

amiss. We call those blips on the radar screen. Our counts can change due to

an infection, or even the drugs used to treat the infection. Be wary, but not

alarmed, it happens to us all. We need each other, because people on the ouside

world don't know anything about CML and they don't understand what is happening

to us. we didn't learn everything overnight and we continue to learn. We have

challenges, but we meet them head on. No matter what your problem is, someone

in the group has experienced it and will be willing to give you the benefit of

their experience. Take heart, science is gaining and breaking new ground all of

the time. For all the drugs we do hear about, there are dozens that are still

in the experimental stage where they use mice. In the investigational stage,

they use humans in Stages, I, II & III before it is presented to the FDA for

approval. Then we hear the trumpets blaring to herald the new drug. One of

them will be the cure.

Be happy and kind to everyone you meet and you will find that there are worse

things to have than CML, because it is now considered a chronic disease to be

managed like diabetes.

Blessings and best wishes,

Lottie (the old lady)