I am an 80 year old male living in South Africa. I was diagnosed with CLL through a routine blood test in 2019 although I already had it in 2017.
I am on watch and wait, I am reasonably fit playing 18 holes of golf twice a week, walking and handling my own golf trolley.
My lymphocyte counts over the past year have fluctuated between 41 and 45. Sometimes up sometimes down.
Recently I discovered two enlarged lymph nodes in my left armpit. My question is, is this normal with CLL . Is it possible that enlarged lymph nodes would shrink to normal size without treatment. What concerns me is that it is highly unlikely I will be able to afford the treatments that I see members discussing on the forum.
Thanks for any info,
Ken
Written by
Buttons42
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Yes, swollen lymph nodes are very common with CLL, especially for those of us who are 11q/ATM del. I have palpable lymph nodes in both arm pits, my neck, under my jaw and my right groin. I also have some enlarged nodes near my collarbone and abdominal nodes that are not palpable.
In fact, I was diagnosed in January because an annual mammogram showed the enlarged axillary nodes. My ALC was only 7.5 then, it is 12.1 now. Everyone’s CLL takes a different course.
I’m not sure if they ever shrink without treatment of some type, but enlarged nodes is not an indication for treatment unless they are pressing on something and causing problems.
It's normal, and not a cause for concern at this juncture. Your odds are good that CLL will take many years to progress to the point where treatment is even considered, even with some lymph node swelling. Spleen swelling can be a little more problematic but even then can be managed - if you start feeling sharp pain in your lower left ribcage get that checked out. That is likely many years out though.
Treatments discussed here - the "ibs" and "axs" - are quite expensive, although there are several options for subsidy depending on your market. But FCR chemotherapy is a standard option and covered by government insurance schemes in many markets. It's not discussed fully here because some large markets have approved other treatments. I don't know South Africa's health system so can't speak to whether it's an option there.
There is also clinical trial as a fully-subsidized option, though trial availability in South Africa is likely limited. I am in one myself, despite good US insurance, and most costs have been covered by the trial.
Easy for me to say, but don't fret. Your odds are good CLL won't progress for years. Enjoy the golf, live your life.
Mine come and go from time to time. Sometimes they pop up if I don't get enough rest or don't eat good or am doing more than I should. Just keep an eye on them and be sure to let your doctor know if they get bothersome. Mine sometimes are soar. I have found that a sock with rice in the microwave warmed up for 20 seconds helps a bit. Open the bag of rice and pour into the long sock and then tie a knot to keep everything in. Be careful not to warm too much and get burned! Help this helps
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