I was diagnosed with NHL in 2016, at the age of 45. Although the type of NHL was not unusual (DLBCL), the way it manifested as cholangiocarcinoma and in the liver was unusual, and I had to have several emergency surgeries to save my life and time in the ICU for weeks even before I started my R-EPOCH treatment.
Fortunately, I am alive and in remission today for about 3 years (yay!). I have the same side effects as many, such as neuropathy, fatigue, stress about relapse, etc. But I also have an issue that I haven't seen discussed much: I'm just not the same cognitively. I was a professional starting my own company before I got sick, now I sometimes find it difficult to string a sentence together verbally.
My writing seems OK, and I know what I want to say, but I often have trouble sometimes finding words, and putting them into coherent verbal sentences. With the R-EPOCH, I also had 12 intrathecal (spinal) injections. And I know there is a blood/brain barrier there and those are not supposed to affect my brain, but I can't help but wonder. Has anyone else experienced this?
If so, you think it could be from being put under for surgery so many times before chemo? A result of the long and strong weeks of R-EPOCH infusion? Or maybe the intrathecal injections? If anybody has experienced any cognitive issues you're willing to admit to, did you do anything to try and correct it? Any tests? Speech therapy, etc... Any experience shared would be appreciated, because I'm just not the same, and it's really affecting me, my conversations, my ability to work, and life. I'm not even 50--I've still got a lot to do!!! 😀
Thanks all...peace and good health to you!