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jbgrene
@jbgrene

Posts: 3
Joined: Jan 03, 2012

chronic lymphocytic leukemia

Posted by @jbgrene, 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?

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DELIA SANDERSON
@deliasanderson

Posts: 176
Joined: Nov 05, 2011
Posted by @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

Posts: 3
Joined: Jan 03, 2012
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
@boutiquegal

Posts: 7
Joined: Jan 06, 2012
Posted by @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

Posts: 7
Joined: Jan 06, 2012
Posted by @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

Posts: 7
Joined: Jan 06, 2012
Posted by @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”

Liked by Anonymous


boutique_gal
@boutiquegal

Posts: 7
Joined: Jan 06, 2012
Posted by @boutiquegal, Jan 6, 2012

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


lmtow
@lmtow

Posts: 2
Joined: Jan 17, 2012
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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safetymantpa
@safetymantpa

Posts: 1
Joined: Feb 03, 2012
Posted by @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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hardy
@hardy

Posts: 2
Joined: Jun 26, 2012
Posted by @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!

Liked by Anonymous, hardy


Teedoff
@teedoff

Posts: 7
Joined: Jan 03, 2012
Posted by @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

Posts: 2
Joined: Jun 26, 2012
Posted by @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

Posts: 7
Joined: Jan 03, 2012
Posted by @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.

Liked by JoniReb


paterson4646
@paterson4646

Posts: 8
Joined: Dec 07, 2012
Posted by @paterson4646, Dec 7, 2012

what was ur white cell count? my is 104.000


paterson4646
@paterson4646

Posts: 8
Joined: Dec 07, 2012
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
@teedoff

Posts: 7
Joined: Jan 03, 2012
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.

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