Re: Re: CML anniversary

July 27, 2008

Lottie you always have a good thought and so knowledgable of our disease.

Happy belated Anniversary. You are an absolute inspiration to me and to others.

You are an amazing Lady. Well said Genie

I look forward to our private emails Lottie you always give me hope, and an

insight to how wonderful people can be.

You will never know how much you help me.

Love

Anita

[ ] Re: CML anniversary

We can all remember the diagnosis day so vividly. Thank goodness for

groups like this where we can come and share our fears and give

others hope. Happy Anniversary Lottie. Twelve years....amazing. ..you

are an inspiration to us all and a lovely lady! Here's to many

many more years!

>

> 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)

>

January 14, 2009

Congrats, It is posts like yours that get me through the " dark " days.

Eva

From: nchando@...

Sent: Tuesday, January 13, 2009 7:03 PM

Subject: [ ] Re: cml anniversary

Five years ago today I was diagnosed with cml. I hated Jan. 13. I thought

I'd never see another one. When the first or second anniversary came around

I'd get depressed thinking about the nightmare of that day. Today I almost

forgot about it! I've been on Tasigna since June and feel great. I need to

remind myself that I have a disease. I'm going to the dr. tomorrow for my pcr

test. I feel pretty good about it. I've been pcru the last two times. I

liked it when Zavie mentioned that a cure is coming in a recent post. I hope

he's right and that all of us are here to celebrate it! Things are so much

better than I thought they'd be. My life is good and I feel great. A cure

would be the " icing on the cake " ! I can now feel that it's a " happy

anniversary " for the first time.

in NY

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January 14, 2009

Congratulations . We do have a lot to be happy about. My 10 year

anniversary was Dec. 12th, I hope that is encouraging for anyone who is

concerned. I also go for my PCR this week, and if all is good then its 71/2

years PCRU for me. Lets all pray that the cure is right around the corner in

our lifetime.

Suzzie

From: nchando@... <nchando@...>

Subject: [ ] Re: cml anniversary

Date: Tuesday, January 13, 2009, 7:03 PM