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CLL what now? What is this ?

 
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HopeInFl
New User


Joined: 09 May 2006
Posts: 1
PostPosted: Tue May 09, 2006 3:20 pm    Post subject: CLL what now? Reply with quote
My dad shared with me today that he has Stage 1 CLL. Our family has been hit hard with brain tumors and I have learned alot more than I ever wanted to know and learned to be proactive in your own care. I am in the process of getting him an appt scheduled at Moffitt Cancer Center in Tampa. What do we need to know? What do we need to ask? All we know is it that is Stage 1 and the Dr told him he has a 5-6 yr progrnoesses. He had a full body CT today but wont know the results for a while. Until now he has been seen at a VA hospital and has honestly not received the best care in my opinion. Any information that you all can share with me to insure that he receives the proper care would be appreciated.
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SteveM
New User


Joined: 29 May 2006
Posts: 3
PostPosted: Tue May 30, 2006 12:34 am    Post subject: Re: CLL what now? Reply with quote
HopeInFl

I think your dads doc is very wrong to tell you he has a 5-6 year prognosis. CLL comes in many buckets, some will live a full life others will not.

Prognostic indicators like IvHg mutation status, ZAP-70 and CD38 expression may give some clues.

Cheers
Steve Madden
www.cllforum.com
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onelphil
New User


Joined: 20 May 2006
Posts: 4
PostPosted: Wed May 31, 2006 12:19 am    Post subject: cll treatment Reply with quote
My wife, age 60, has stage 3 cll. She was given 5 treatments of Fludarabine, Cytoxan, and Rutuxan. She was cd38 and zap 70 negative, which is a good sign. She is in full remission and has been for 1 year. Her white count was never over 9300. The last treatment was cut in half due to low blood numbers and a planned sixth treatment was dropped. The Rutuxan goes after the cd20 cells. These new treatments like Rutuxan show a lot of promise. She also has NSCLC stage 3b and just finished treatment for that - it is also in remission. Trust in the doctors - they are 2 for 2 with my wife and had to dance around bad blood numbers when treating the lung cancer. Phil
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