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Started by jbgrene (@jbgrene) · Jan 3, 2012

chronic lymphocytic leukemia

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?

cancer

 

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DELIA SANDERSON (@deliasanderson) · 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 (@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 (@boutiquegal) · 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"

safetymantpa (@safetymantpa) · Feb 3, 2012 · #

I have also been recently diagnosed as Stage 0. Just got over prostate cancer. Have specialist appointment for end of the month for biopsy for possible melanoma on shoulder. Add in the CLL and I guess cancer doesn't take any time off.

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boutique_gal (@boutiquegal) · 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 (@boutiquegal) · 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 (@boutiquegal) · Jan 6, 2012 · #

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

lmtow (@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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hardy (@hardy) · Jun 26, 2012 · #

I am slowly progressing with CLL, my WBC count is 95K and just had a CT scan to check for enlarged lymph nodes. Nothing too remarkable yet, but my Dr. said probably treatment will begin in this Fall. Did you prepare for treatment in any way? Also, is your hair thinning? I have been told I will not lose my hair, but that it may thin. Best Wishes, you sound very positive!

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Teedoff (@teedoff) · Jun 30, 2012 · #

No real prep needed other than a few tests including one to check your heart's efficiency. But I do suggest getting a port implanted; keeps you from having to get your arm stuck so many times. My hair did thin out a bit, but I'm losing it slowly anyhow. Best Wishes.

hardy (@hardy) · Jul 1, 2012 · #

Thanks, you are so encouraging. I will keep you in my prayers for a total remission. I love your positive attitude, it eases my anxiety.
Take care.

Teedoff (@teedoff) · Oct 22, 2012 · #

I'm now about 8 months post-chemo and my recent CT shows that the nodes are even smaller than before, as is my spleen. Thank you, God.

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paterson4646 (@paterson4646) · Dec 7, 2012 · #

what was ur white cell count? my is 104.000

paterson4646 (@paterson4646) · Dec 7, 2012 · #

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

Teedoff (@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 (@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?

Teedoff (@teedoff) · Jan 9, 2012 · #

I was vacationing in Las Vegas when I had abdominal pain which I thought was food poisoning, but it didn't go away and kept me up all night. We returned home the next day. I still had the pain and I got a CT scan which showed extensive abdominal lymph node swelling. My WBC was 38K; nearly double what it had been a few months ago, so I knew then what was going on. I had a lymph node biopsy 2 days later to rule out Richters and started chemo a few days later. So the WBC wasn't as important as was the sudden rate of increase. That, along with the abdominal adenopathy and an enlarged spleen all in a short time period required the chemo since the disease was obviously taking off. I encourage people to do a lot of reading in order to understand what's going on and to be able to make informed decisions about their care - one good article is at http://bloodjournal.hematologylibrary.org/content/111/12/5446.full.html. A lot of it is very technical but a lot of good info in it. I avoid blogs since the posted info can be questionable. I am curious whether you have tried any non-prescription stuff such as green tea extract.

jbgrene (@jbgrene) · Jan 17, 2012 · #

Thanks for your info...I have had severe abd. pain and thought it divirticulitis but no on the CT-scan. Would you think maybe enlarged abd. lymph nodes which I do have would be the cause? Its been a mystery. All lymph nodes enlarged as shown on CT scan. I am a very positive patient and feel very confident of a good remission. Good luck to you.

Teedoff (@teedoff) · Jan 18, 2012 · #

Diverticulitis was my second guess, and like you, it was shown otherwise by the CT. The lymphadenopathy was the cause of my abdominal pain, and could be yours as well. The largest nodes were right near my belt line and were getting subjected to pressure when I sat. A positive attitude is very important...good for you! Best wishes.

lmtow (@lmtow) · Jan 17, 2012 · #

100,000 white count without other problems is no longer considered reason to start treatment. Your MD is not up-to-date. The criteria for starting treatment are covered well in this article at clltopics.org, a well-regarded web site. http://updates.clltopics.org/3988-almost-everything-you-need-to-know-about-cll. Also, this Mayo study about how important it is that your MD be a CLL expert is interesting: http://updates.clltopics.org/3888-does-expertise-matter. You do not need treatment until something significant happens (enlarged spleen, anemia, low platelets, etc). I recently started treatment at 155,000 when my spleen enlarged more than 6cm below the ribs. So far, FCR has been very effective after only 2 rounds out of 6, with tolerable side effects. Best wishes.

boutique_gal (@boutiquegal) · 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 (@boutiquegal) · 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 (@boutiquegal) · 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 (@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 (@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 (@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.

Anonymous (@anon10029851) · Jan 26, 2013 · #

There are several prognostic factors in CLL work up and the subject is complex. You need to know which risk factors you have. For example, I have Trisomy 12, ZAP 70, and am in the "intermediate risk" group. Those with 17p deletion are "high risk" group. Other factors such as 13 q deletion are very favorable. 25-year survivors possibly.

dougr (@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 (@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