Mayo Clinic Connect
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?
no i don’t have cll but i do need dental surgery. did you find your teeth were decaying or your gums.
Does anyone else have cll or has been treated for cll and what are the side effects of chemo? Thanks so much.
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
I have been trying to reply but not sure I am doing this right
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.
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.
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
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.
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.
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
what was ur white cell count? my is 104.000
Please dont use chemo radiation will cause other cancer to come in .chemo will damage ur bonemarrow & immune
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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