Cancer Forums - Leukemia Forum

Guest · Posted: Fri Nov 12, 2004 8:14 am Post subject: CLL

Hello, My husband was recently diagnosed with CLL. Is there any one out there who has CLL and can share their experience. Thank you, Heather

leo · Owner Joined: 23 Sep 2004 Posts: 1574

Hello

CLL is a really indolent disease. It is a disease that usually affect older folks, and most of the times patients die from causes other than the CLL. If it is considered a stage 0, meaning nothing is being affected by the disease, only the white count is high, no treatment is necessary, only monitoring.

You can check www.nccn.org for more info, but CLL is definitely not one of the worst leukemias to have.

regards,
Leo
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Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

Mary Anne · Guest

[quote="Anonymous"]Hello, My husband was recently diagnosed with CLL. Is there any one out there who has CLL and can share their experience. Thank you, Heather[/quote]

I am 57 and have had CLL for four years. I had chemotherapy a year and a half ago. Although my cancer is not gone, I am teaching again and I am doing well. I do seem to have more infections than before but they are minor right now. My oncologist thinks I will need chemo again some day, but right now I am enjoying life. I have never talked with anyone else who has CLL. Maybe I can help. The diagnosis is frightening but because this type of leukemia is so slow to progress, it is a disease you can live with - literally. Mary Anne

Heather · Guest

Thank you Leo for your info. Unfortunately, My husband is in stage 4.
Heather

HEATHER · Guest

HELLO MARY ANNE,
THANK YOU SO MUCH FOR ANSWERING. MY HUSBAND IS 54. WHEN DIAGNOSED HE WAS IN STAGE 4, WE KNOW THATS NOT GOOD. WE ARE CONFUSED AND WORRIED, IM SURE YOU CAN RELATE. I HAVE SO MANY QUESTIONS ABOUT CLL FOR YOU. IS IT NOT A GOOD IDEA TO GIVE YOUR EMAIL ADDRESS ON A FORUM?(IM NEW AT THIS).

THANK YOU,
HEATHER

leo · Owner Joined: 23 Sep 2004 Posts: 1574

Heather

You can both register and send private messages to each other. Also you can send people e-mails through the board so that other's emails are not public.

regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

HEATHER · Guest

LEO,
THANK YOU. IM GOING TO GO AHEAD AND REGISTER AND HOPE THAT MARY ANNE DOES THE SAME. HEATHER

Guest · Guest

[quote="Anonymous"]Hello, My husband was recently diagnosed with CLL. Is there any one out there who has CLL and can share their experience. Thank you, Heather[/quote]

Hi...my husband has had CLL for nearly 3 years. Would like to talk with you.

HEATHER · Regular Joined: 17 Nov 2004 Posts: 24

[quote="Guest"][quote="Anonymous"]Hello, My husband was recently diagnosed with CLL. Is there any one out there who has CLL and can share their experience. Thank you, Heather[/quote]

Hi...my husband has had CLL for nearly 3 years. Would like to talk with you.[/quote][quote]

Hello,
I dont know your name.
I have been checking every day for a response from Mary Anne but, no luck! I am so glad you read and responded. My husband was diagnosed with CLL on 9/30/04. Because of the aggressive type and stage he was in, he started chemo six days later. We are extreamly worried, scared and lost, and thats definitely putting it lightly! Is there anything you can share with us, anything. If there is anything I could share with you, to help you, please let me know. I am anxious to here from you.
Thank you, Heather [/quote]

wwduffy · New User Joined: 26 Nov 2004 Posts: 1

Dear Heather,

My name is Bill Duffy (wwduffy@aol.com), I have had CLL for over 3 years, and have already undergone a successful round of chemo. I am also on the Board of Directors of a non-profit CLL Advocacy and Education group with its own website www.clltopics.org

Take a look at that website, It may have many of the answers you're looking for. If you have more questions, you can e-mail me directly.

Best Wishes,

Bill Duffy, 61, dx 8/01, Rituxin/Fludara X 6, Complete Remission

little.change · Posted: Sat Nov 27, 2004 4:39 am Post subject: CLL

Hi Heather,
CLL is a cancer with many faces. It will take a while for it all to sink in. I see that Bill Duffy has directed you to CLLtopics. This is only a subsection of a very large-I'm talking thousands of people with CLL incl 2 Dr.s who offer supposrt to each other. Many have been through so much and share their experiences with everyone. There is more info on CLL than you could ask for. If you live in the US you can even find out which Drs in your area area specialists in CLL! The site is www.acor.org and then scroll down until you find the CLL line and go from there. You won't regret it. I couldn't have made it through emotionally and not knowing very much. I was 38 when I was diagnosed and it sure was hard to know my life was going tobe cut short. ir I had been 50 it might had made it a bit easier having 12 more years of life lived. But I guess God had other plans! Take care and hope to see you on the acor site. Kristina

HEATHER · Regular Joined: 17 Nov 2004 Posts: 24

Hi Bill,
Thank you for writing. I will definitely take a look at that web site. What stage were you in when diagnosed? All info I find on CLL talks about early stage diagnosis. When you write Rituxin/Fludura X 6, does that mean a six month treatment? My husband is doing Rituxin, Fludura and Cytizan for six months. Thats the plan as of now. He has had only two treatments. His wbc count was over 600,000 when diagnosed it is under 300,000 now. Although the treatments seem to be doing what they are suposed to, the chemo is doing its own thing to the rest of his body! Very low Hemaglobin, very low platelets, etc,. The strange thing is, other than no energy you wouldnt know he was sick!!! Thanks again Bill, and I probably will email you.
Congratulations on remission. I hope someday someone is saying that to my husband.
Heather

HEATHER · Regular Joined: 17 Nov 2004 Posts: 24

Hi Kristina,
You hit it right on the nose when you said CLL is a cancer with many faces!
What stage were you in when diagnosed? Every since my husband was diagnosed our life has been an emotional roller coaster. It has completly comsumed our lives. You talked about life being cut short. I think at any age thats a tough one. My husband and I just celebrated our 4th wedding anniversary. When I think we may not celebrate our 5th, makes me sick to my stomach. Its not suposed to go this way. Anyway Kristina, thank you for the info and I will check out that web site. Heather

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