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Has anyone had any cognitive or speech issues after chemotherapy?

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!

  1. Hi , While you wait for others to respond, I want to share a couple articles about "chemo brain" and memory problems after receiving treatment. I actually see this experience talked about pretty frequently in our group and other oncology communities. I hope this is helpful and you get some more responses from others here soon! Thanks for reaching out and welcome to the community!

    1. Thank you so much for the reply. Maybe it was chemo brain that caused me not to think about chemo brain (😀). Actually I did suffer from classic chemo brain symptoms for the first year after chemo—it was like a fog that was over my thoughts that slowed everything down. But it seemed to lift. Also, I really didn’t think chemo brain was applicable 3 years out in remission, which is why I didn’t consider it. I feel pretty quick, just slow with speech. But yeah, it could be chemo brain. Thanks again.

      1. Ronni Gordon I also had stem cell transplant for AML June 10th, 2020, after a relapse. So I'm coming up on my 1 year post SCT. But I wanted to ask you what "reiki" is? Hope all is well with you. Best wishes. Shane (moderator)

      2. The older I get the less inclined I am to blame things on aging.. If something is off and is persistent like pain etc I am more prone these days to call and set up an MD appointment. That has paid off for me a few times now.

        Agree on calming therapy like meditation and have used hospital sponsored Reiki . Makes a huge difference

    2. Hi,
      I too experienced fog like feeling after chemo. I shared my experience with my oncologist. There is some research with several meds that might help but I was reluctant to try.
      I have found Yoga clears my head and I have less difficulty with word search.
      I consistently make “to do” lists and make every effort to try to remember things. Journaling has also helped.
      Wishing you a continued remission!

      1. I think the main thing is after chemo is to keep our brains busy and active. I think that as long as I was reading a lot, or problem solving such as games where you have to think, it's kept the fog down to a minimum. I know it certainly helps keep the boredom Best wishes. Shane (moderator)

      2. , you are so right!

    3. Hi @kpnhsurvivor
      I've been having some similar issues. I'm going to a functional doctor. She said it may be due to some heavy metal buildup in my body which could also affect my memory. I will be doing a urine test for this as soon as everything I need comes in. The doctor is $200 per visit (for this test I need 2 visits) and the test in total will be about $300. I'm not sure what will happen after or the cost of treatments if I do have heavy metal buildup.

      I also had chemo with the fogginess, but this seems a little different. It has been about 3 years and the chemo was experimental. I had to stop it before the trial was over because of the extreme effects it had on me. Maybe it's still the effects from that - I don't know.

      I hope this helps.

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