Re: Re Occuring CLL; Requesting Advise from group.

[Guest guest]

Mahesh,

Have you seen a CLL specialist? It is very important to be seen and evaluated by someone with special CLL experience. Many of us consult with a member of the CLL Consortium and see a local Hem/Onc for the day to day follow up.

Good health and good health,

Dan Hill

Re Occuring CLL; Requesting Advise from group.

This is my first post so bear with me. I am 65 years old and was diagnosed as having CLL November 2003. My WBC ( 96K ) and Lymphocytes ( 75K ) were high while rest of blood chemistry was within normal, closer to low end. Lymph node under my left arm ( I am lefty ) grew larger ( 4-6 centimeter round ) and WBC approached @ 120K around February 2004. Flow Cytometry showed lymphocytes were positive for CD19, dim CD20, dim CD5, dim CD23, dim CD45 and dim Kappa Light Chain. CD10 was negative. My Fish test showed Trisomy 12 ( 57% of cells ). My doctor did not want to wait longer thinking my CLL get more aggressive and change to worse. I Took 6 cycles of FC protocol, February thru' July 2004. After very first cycle, my blood chemistry became normal and by 4th cycle there were no indications of external nodes. I believe my Spleen was OK all the time. Since I tolerated FC very well, my doctor wanted me to finish rest 2 cycles, hoping that will give me longer or CR. Things remain normal untill Dec. 2007 when my WBC went to 12K and Lymphosite 7K. Since than WBC has reached to 31K amd Lymphs 26K. NO visible nodes and I believe normal Spleen. Some how my doctor pays lot of attention to LDH and unfortunately my LDH at last visit ( May 08 ) was 1100. My IgG is 450, IgA is 31, IgM is 10I have not seen much reference to LDH. What is importance of this in CLL?Eventhough my doctor says wait and watch for now, he did mentioned that since I tolerated FC well he might try it again most likely as FCR. He also mentioned PCR protocol.It was my understanding that Fluradibine F can only be taken twice or so. Is my understanding correct? Is there anybody who had F more than few times?I see some talk about Green Tea. Is it good to take? Is there anything else that can be taken as maintenance? What are my best options? Any responce/experience/advise will be appreciated.

[Guest guest]

My doctor is a CLL specialist.From: Dan Hill <hvwk95a@...>Subject: Re: Re Occuring CLL; Requesting Advise from group. Date: Friday, June 13, 2008, 12:15 AM

Mahesh,

Have you seen a CLL specialist? It is very important to be seen and evaluated by someone with special CLL experience. Many of us consult with a member of the CLL Consortium and see a local Hem/Onc for the day to day follow up.

Good health and good health,

Dan Hill

Re Occuring CLL; Requesting Advise from group.

This is my first post so bear with me. I am 65 years old and was diagnosed as having CLL November 2003. My WBC ( 96K ) and Lymphocytes ( 75K ) were high while rest of blood chemistry was within normal, closer to low end. Lymph node under my left arm ( I am lefty ) grew larger ( 4-6 centimeter round ) and WBC approached @ 120K around February 2004. Flow Cytometry showed lymphocytes were positive for CD19, dim CD20, dim CD5, dim CD23, dim CD45 and dim Kappa Light Chain. CD10 was negative. My Fish test showed Trisomy 12 ( 57% of cells ). My doctor did not want to wait longer thinking my CLL get more aggressive and change to worse. I Took 6 cycles of FC protocol, February thru' July 2004. After very first cycle, my blood chemistry became normal and by 4th cycle there were no indications of external nodes. I believe my Spleen was OK all the time. Since I tolerated FC very well, my doctor wanted me to finish rest 2 cycles, hoping that will give me longer or CR. Things remain normal untill Dec. 2007 when my WBC went to 12K and Lymphosite 7K. Since than WBC has reached to 31K amd Lymphs 26K. NO visible nodes and I believe normal Spleen. Some how my doctor pays lot of attention to LDH and unfortunately my LDH at last visit ( May 08 ) was 1100. My IgG is 450, IgA is 31, IgM is 10I have not seen much reference to LDH. What is importance of this in CLL?Eventhough my doctor says wait and watch for now, he did mentioned that since I tolerated FC well he might try it again most likely as FCR. He also mentioned PCR protocol.It was my understanding that Fluradibine F can only be taken twice or so. Is my understanding correct? Is there anybody who had F more than few times?I see some talk about Green Tea. Is it good to take? Is there anything else that can be taken as maintenance? What are my best options? Any responce/experience /advise will be appreciated.