Mayo Clinic Connect

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jbgrene

chronic lymphocytic leukemia

Posted by jbgrene in Cancer, Jan 3, 2012

Recent diagnosis..starting treatment next week as symptoms are present and were found after a recent dental surgery. All lymph nodes are enlarged and loss of weight 30#. Anybody else with cll out there?

DELIA SANDERSON

Posted by DELIA SANDERSON, Jan 3, 2012

no i don't have cll but i do need dental surgery. did you find your teeth were decaying or your gums.

jbgrene

Posted by jbgrene, Jan 3, 2012

Does anyone else have cll or has been treated for cll and what are the side effects of chemo? Thanks so much.

boutique_gal

Posted by boutique_gal, Jan 6, 2012

I have recently been told I have cll. Found out throug a routin blood test. but no treatments yet. At the watchfull waiting stage. I have been told I am in Stage "0"

boutique_gal

Posted by boutique_gal, Jan 6, 2012

I have recently been told I have cll. Found out throug a routin blood test. but no treatments yet. At the watchfull waiting stage. I have been told I am in Stage "0"

boutique_gal

Posted by boutique_gal, Jan 6, 2012

I have recently been told I have cll. Found out throug a routin blood test. but no treatments yet. At the watchfull waiting stage. I have been told I am in Stage "0"

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boutique_gal

Posted by boutique_gal, Jan 6, 2012

I have been trying to reply but not sure I am doing this right

lmtow

Posted by lmtow, Jan 17, 2012

I started treatment with FCR in November at Stanford. Treatment started when my spleen enlarged too much. MY WBC was 155K. I had immediate response from the treatment with my WBC ending at 2 at the end of round 1! My external nodes have shrunk to almost undetectable and my spleen is shrinking. Whether I get a Complete Response and a good chance at a long remission, only time will tell, but so far it's all going well. Side effects: nausea easily controlled with medication (Zofran, Atavan, and Compazine), lack of appetite, tiredness. These were worst during the first round and have gotten better. Just completed my 3rd set of chemo infusions and was off of all anti-nausea meds by the 5th day after chemo. The worst side effect for me has been one week in the hospital due to a fungal respiratory infection which took advantage of my being neutropenic (very low neutrophils, which fight/prevent infections). Neutropenia and therefore infections are risks of chemo for CLL. If your treatment will be FCR you will NOT lose your hair.

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paterson4646

Posted by paterson4646, Dec 7, 2012

what was ur white cell count? my is 104.000

paterson4646

Posted by paterson4646, Dec 7, 2012

Please dont use chemo radiation will cause other cancer to come in .chemo will damage ur bonemarrow & immune

Teedoff

Posted by Teedoff, Jan 3, 2012

I have been diagnosed for almost 6 years but had no symptoms until last August. I've now completed 4 of 6 scheduled treatments with "FCR" which is considered the "gold standard" for initial CLL treatment although the treatment may be different based on the patient's individual condition and/or circumstances. A CT scan after my 3rd cycle showed very encouraging progress/results. Side effects have not been bad; my clinic is very aware of them, and they pre-treat for the common ones so it really hasn't been bad. I still have most of my hair. The worst part for me is the Neulasta side effects which include aching bones for 1-2 days, but it's certainly tolerable. Chemo effects are cumulative, so the fatigue/weakness has gotten more pronounced in the last couple months. I had a port implanted in my chest thru which the drugs are infused - it makes the chemo treatments much easier because I get stuck only once each cycle and never a problem with finding/hitting/blowing a vein. Good luck; let me know if I can help further.

Mims

Posted by Mims, Jan 9, 2012

My WBC was 81,000 at my last appt, but I have no other syptoms at this time. My doctor said he'll probably start me on chemo when I get to 100,000. What were your symptoms last August that got you started in chemo treatment? What was your WBC at then and was your WBC a determining factor in the doctor starting chemo?

boutique_gal

Posted by boutique_gal, Jan 6, 2012

I have recently been told I have cll. Found out throug a routin blood test. but no treatments yet. At the watchfull waiting stage. I have been told I am in Stage "0"

boutique_gal

Posted by boutique_gal, Jan 6, 2012

I have recently been told I have cll. Found out throug a routin blood test. but no treatments yet. At the watchfull waiting stage. I have been told I am in Stage "0"

boutique_gal

Posted by boutique_gal, Jan 6, 2012

I have recently been told I have cll. Found out throug a routin blood test. but no treatments yet. At the watchfull waiting stage. I have been told I am in Stage "0"

Teedoff

Posted by Teedoff, Jan 7, 2012

A lot of people find out this way; including me. You might stay at stage 0 for years, and maybe forever. Take time to educate yourself. There's some evidence that an alkaline diet may be helpful, and some significant evidence that green tea extract may be helpful (I use it). This is no death sentence...get on with your life and keep your oncology -and blood tests - appointments. Good luck.

Mommabear

Posted by Mommabear, Jan 6, 2012

I am asking about my son's symptoms but yes he has had some issues with his teeth

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Teedoff

Posted by Teedoff, Jan 7, 2012

What are your son's symptoms and what is his age? CLL is ordinarily found in older people - I was 55 when diagnosed, and that is younger than the median. I haven't read of any direct correlation to dental issues.

dougr

Posted by dougr, Mar 26, 2012

I have CLL and a lymph node removed for diagosis but no treatment. Where are you going for treatment?

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paterson4646

Posted by paterson4646, Dec 7, 2012

yes i have CLL .Please dont let them use chemo or radiation will cause other cancer to come in .chemo weaken ur Immune & damager ur bonemarrow here is my number 773-981-2166 call me

 

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