Hello,
I live in Minnesota and was diagnosed with CLL in Oct 2022 and my oncologist at the Masonic Cancer Center put me on the O and V treatment which started in Dec 2022.
I finished the O in May 2023 and the V in Dec 2023.
Latest blood test has all my counts in the normal range except Abs Lymphocytes which has been steady at 0.7 (normal range is 0.8-5.3).
In Oct 2023 I started experiencing this sense of imbalance when I get up and walk around. I don't feel it when I'm sitting or lying down. Its not a spinning sensation like vertigo, its more of a wobbly feeling and sense of imbalance. I saw a cardiologist to check out my cardiovascular system and my blood pressure is normal and 12 lead ekg and echo cardiogram are normal so that rules out orthostatic hypotension. I also saw an neurologist to test my sensory nervous system and based on the tests he believes it could be peripheral neuropathy related and possible chemotherapy induced due to something called Paraneoplastic syndrome where cancer fighting agents of the immune system also attack parts of the brain, spinal cord, peripheral nerves, etc. He ordered a paraneoplastic blood panel to check for the presence of paraneoplastic antibodies. I should get the results in 7 days or so. Next week I am also seeing an ENT to check the inner ear and vestibular system which also controls balance. Just trying to check off all the boxes and get to the bottom of this issue.
I live a very healthy lifestyle staying active where I run, play tennis, pickleball, weights, x-ctry ski etc. The Neurologist told me that staying active is very important to keep the nervous system functioning at normal levels.
Has anybody else experienced this situation while on the O and V treatment? I have heard that these drugs can stay in your system for many months after you have completed treatment, so I am hoping that this is temporary and will wear off once the effects of these drugs are out of my system. That's kind of what my oncologist was telling me but who really knows. Some of these side effects are temporary and some can be permanent.
Thanks for listening!
