Hello Everyone

[Guest guest]

Hi everyone,

First off, thank you Amy for starting up this site. I

appreciate it very much.

Just to give a bit of backgroud on myself...

My name is Lynn and I'm married, 42 and a stay at home Mom of two

daughters age 5 and 8. I was dx'd on 12/10/03 after many months of

being sick, but seemingly going under the radar with my dr's. They

were treating symptoms, but just didn't run a simple blood test.

They even checked my thyroid but tested nothing else. ugg. I had

been having off and on night sweats, and a chronic cough that would

not go away. Dr's treated me with antibiotics for so called " Walking

pneumonia " .. bronchitis... but nothing worked. I was exhausted!

Then, one day, I dropped the soap in the shower, and when I leaned

down to pick it up, I felt hard on my left torso. I also palpated my

torso laying down, and things were not normal. That same week, I had

scheduled a annual Pap exam,, so I figured, I wasn't getting anywhere

with the reg drs... I'd just bring it up to the OB/GYN! When I

showed her my problem, she turned white and nearly fell over! She

called and scheduled a CT Scan, but still no bloodwork order. It was

after the ct Scan came back with a massive spleen, that the

Oncologist that she was going to refer me to demanded that I have a

bloodworkup STAT, and then I was off to go get a Bone Marrow Biospy.

Two hours later, I met my Oncologist, and we were already getting the

preliminary results in of the Biopsy. I ended up landing in the

hospital for 3 days to stablize and to receive 2 units of packed red

cells. For the first time in many months, I felt like a new person

with those new red cells! My white count was 305,000 and almost

everything else on the bloodwork was out of whack too! I was 100%

Philly + but less than 2% blasts.

After the encouragement of many members of the CML support group (you

know who you are :-) , I ended up firing my first Hem/Onc because he

was extremely unsupportive and did not want me to learn anything

about CML. He just wanted me to get the transplant, and scoulded me

continuously for reaching out to others for help on the internet. He

had no faith in Gleevec, but I responded incredibly well. He just

rolled his eyes!

I live in WA State, and went ahead with a transplant consult at the

Fred Hutchinson to learn about my options. Both my brothers were HLA

tissue typed and neither one was a match.. one was 3/6 antigens,,,

one was 0/0 (blood brother too). I had 5 potential donors at the

time, but nothing specific about their match.

I put my faith into Gleevec, and made a choice to live with quality

rather than quantity if necessary, and just decided to see where the

Gleevec road took me. I " m glad I did.

I reponded well and my high white count returned to normal within a

month or so. After the 6 month point, and had reached a Partial

response. Then, at the 9 month point, I had 0 Phillies, 0/300 Fish,

and PCR Undetectible with 100,000. I continue to have normal

counts and am PCRU.

Since that time, I have continued with 400 mg Gleevec. I have a few

side effects, but I think of the alternative, and anything is better

than that!

I am extremely fortunate and I am so lucky to have met such a

wonderful group of caring individuals on the CML support boards. I

am blessed everyday, and am finally able to move on without thinking

about it 24/7. My life is good. I have learned not to beat myself up

over this and I finally stopped apologizing to my hubby and girls for

getting this disease. Mom's aren't supposed to get sick,, especially

when the kids are little, right?

So, that is my story in a nutshell, with a lot of stories in

between. I look forward to getting to know the new members and I

love the old ones too!

Take Care,

Lynn (Snickersunny).. Snickers is 15 year old black and tan tabby cat

that I " ve longer than my hubby, Pete

Sunny is a 12 year old fluffy orange tabby

Zavie 0 Club #692