My husband's diagnosis and our story

March 7, 2009

Hi I am new here and here is our story:

On 12/24/08 my husband quit smoking after 51 years. Shortly after that the

symptoms came out -- weight loss, exhaustion, night sweats, etc. He got

bronchitis twice. We did not know. On 1/28/09 his stomach protruded out and he

was so uncomfortable he could no longer work. He developed a cough so bad he

could hardly breath. I found him a community health doc for a $5.00 visit as he

is a contractor with no insurance. The doc felt his stomach and sent him the

following Mon for a CT Scan (normally 1200 but for a disc. $300 thank god). The

cat scan took 15 mins and while we had a sandwich across the street we got a

call from Dr. Burke's to come back in. He told us the news was bad, it was

either Leukemia vs. Lymphoma and to see an Oncologist right away. He made the

appt for Dr. Shih at TN Oncology (affiliated with Cannon Cancer Centers

here in TN) for 2/12/09. I went about telling his 2 daughters (49 and 31) the

news, they took it bad, but I told them that we just got married 12/29/08 and to

not throw dirt on him yet, cuz we can beat this. Then they got the right

attitude. We went to the oncology appt. 2/12 and Dr. Shih said his white blood

cell count was 500,000 and it should be 4.5 5000 and he wanted to treat him on

an inpatient basis to control his electrolytes while he got to the bottom of

what exact type of Leukemia he had. We admitted him to St. hospital that

day. Well I am amazed. He underwent Leukophoresis for 2 days while there.

They literally took the " sludge " blood (after giving him 2 units of healthy

blood) out and pulled out white blood cells, sending back the healthier blood to

his body. After 2 treatments, his blood cell count was 250,000. Dr. Shih put

him on Hydrea and Gleevec and when he left St. on 2/19 his count was at

230,000. He left on Hydrea only 2 x a day because Gleevec is so expensive and

we were waiting on approval for financial aid from Novartis for free Gleevec,

however, when we saw Dr. Shih a week later, Fonsie's blood was down to 65,000

and dropping. By that time we had received approval and our first shipment of

Gleevec. Fonsie now takes 400mg Gleevec once daily and only sees Dr. Shih once

a month. He continues to get better every day. We hope to have him in

remission soon and in full cytogenic remission after that. Our financial

situation is kinda crazy now even though I am applying for help and Fonsie has

applied for social security disability, we have not heard yet on the outcome and

waiting is not our speciality. We are making the best of it and we find that

each new day is more special than the last. The doctor told Fonsie that if he

did not quit smoking (it was masking his symptoms) that he would be dead by now.

I know this has been a long posting, but forgive me as it is my first. The rest

should be shorter. Updates to my caregiver stories will be shorter. Thanks

y'all for listening. Tennessee for 15 years. Upstate ny for 31 Judy and

fonsie

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