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2 yr diagonesed CLL

Shakil
Posts: 1
Joined: Oct 2005

I am 51 and a routine test found high wbc 14.6. After further tests my oncologist gave me the news: CLL.Treatment: watch and wait.
My question is: At what point do they go from 'watch' to 'doing'?
My WBC and Lymphocytes are now 16.8 & 9.9. Climbing at every test (every 3 months) I am also being treated for nerve damage and those drugs have knocked me down but my main worry is when will any treatment be given? Thanks and God bless all survivors.
I am a fighter and have researched alternative cures and am currently on herbal meds which could be why my doc says 'I don't know what it is but keep on doing it'. I am worried and would like to know as much as possible about this. Thanks again.

ariajohn
Posts: 2
Joined: Nov 2005

I too was just told I have cll. I'm a 51 yo male with no previous medical issues. This pass June I had a BM biopsy which confirmed the cll. This all started because of heartburn. Blood was taken and the doctor told me to see a Hemotologist asap. That was in May 2005. My wbc was 12. In June it was 17 and my last test was in Sept and now it is 19.7. Cat scan showed an enlarged spleen but nothing else.

I just talked to someone from ACS and I asked them the same thing you want to know. ACS said that only my doctor can make that decision. ACS did say to ask for a new blood test that looks at proteins containing Zap-70 and a substance called CD-38. According to ACS high levels of these 2 items means a progressive cll. Maybe that's what determines when we go from "watching" to doing.

If you find out anything more, please write back.

Keep the faith and stay healthy.

One more thing...I hear that Green tea is good for us, as long as it is in high doses.

John

Lyndawithay
Posts: 14
Joined: Mar 2005

I was dx with stage 3 cll in jan 05. BM test showed zap70 & cd38 negative. Started chemo next day. Positive values of zap70 & cd38 means that the cll is harded to put in remission. Had 5 treatments of Cytoxan, Fludarbine, Rutuxan and cll now is in remission. I think they start treatment when you get to stage 3 but not sure.

molliedog's picture
molliedog
Posts: 1
Joined: Nov 2004

you guys were diagonesed with CLL i was diagonesed with ALL when i was 2 years old im 12 right now. its pretty hard right now for me. im a fighter. but i can live through the pain.

nice talkin to ya

bye,
rebecca

lfondots63's picture
lfondots63
Posts: 823
Joined: Jan 2006

Hi,

I was just diagnosed with colon cancer in December and my dad was diagnosed with CLL about 2 years ago. I have been coming to this site since my diagnoses and wanted to start finding things out for my dad. He is also on the "watch and wait" program. I don't know any of his test results but I would love to know what herbal meds you might be using. He is so tired all the time that I wanted to find something he can take for this in herbs or something natural. I am going to start "juicing" like the other semi-colons so I am wondering if there are foods that might help also. I know that all of us hate the waiting game with his cancer. At least my cancer did something good. It is making both my mom and dad stop smoking. They are on day 5 and I am so proud. I told them today that I definately have cancer (didn't tell them results until now even though I knew them right after surgery) so they still have the will to quit.

Lisa

teributterfly
Posts: 5
Joined: Aug 2006

I am 52 years I was 1st told I had CLL 11 years ago. I was scared. I am now in Stage 4 and will be starting chemo next week. I am less scared today then I was 11 years ago. Ask questions of your Doctor. Check out those answers. Hang in there>>> PS my wbc has been over 120.0 its now at 48.7 It can be roller coaster

tf168wife
Posts: 21
Joined: Mar 2009

to those of you who have recently been diagnosed with CLL and have lots of questions, there is a fabulous website for you - it is www.cllforum.com. I joined several months ago after being diagnosed with Stage 1 CLL last November. I didn't know anything about leukemia - except that it is cancer, and it is bad. Nor did I know what to expect. This website is full of very knowledgeable people living with CLL - some in watch and wait, some in treatment, and some in remission. They can answer just about any question you may have. There is such a range of emotions and so many questions....... it is still a roller coaster ride for me. But this group understands and is very supportive. Email me anytime, or check out the website. We need all the support we can get.
God bless,
vets.wife

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