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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.

I have trouble finding words

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!

Community Answers
  • Susan Gonsalves moderator
    3 weeks ago

    @kpnhlsurvivor On oral chemo for life and it has definitely taken its toll on my brain and ability to find words at times and short term memory is bad. I have to really make myself concentrate on `bad’ days or try to pick a different word that means the same thing if I can’t remember. Just one more side effect.

  • Ramae Hamrin moderator
    3 weeks ago

    Hello, @kpnhlsurvivor!
    I could have written this myself a year ago. I was under 50 (still am) and couldn’t put together a sentence some days. I was forgetting the most mundane things, and struggling to comprehend the simplest. I was a former calculus teacher and couldn’t keep the most basic information in my head to even do taxes. I did go to Mayo for a neurology screening. I did fine on that so didn’t go for further testing. For myself, I find that the quality of my sleep and level of fatigue have a huge impact on my cognitive function. I also suffer from fibromyalgia, so I just need to slow down. I can, since I no longer work, but It’s been tough getting used to such a slower lifestyle. I was a long distance runner and overachiever. I agree with Ronni and Carole’s suggestions of yoga, and I would add meditation, which has significantly helped me become more calm and less anxious. And, like Ann, I am considering going to a functional medicine doctor to see what can be done to help my whole body. It’s not covered by insurance, but I think it may be a great help moving forward. Best wishes, and please keep us posted on how you’re doing!

  • Ann Harper moderator
    3 weeks ago

    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.

  • Carole McCue
    4 weeks ago

    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!

  • KPNHLSurvivor author
    3 weeks ago

    Carole, thank you so much for sharing.

    I, unfortunately, don’t have that kind of relationship with my oncologist. Our relationship is completely the business of defeating the disease of cancer. He’s an effective medicine man and was a pioneer in developing treatment regimens, but not much about total health. But you’re right, I may need to search out medical help somewhere, perhaps a speech therapist.

    Lists are definitely a necessity for me! I have a list for everything, even my morning routine. And I like your precisely-labeled term: word search. That’s exactly it. I find myself stuttering while looking for the right word when I *know* exactly what I want to say. But I think I’ve made too much of it when the chemo brain answer was right before me. I just never thought 3 years out it might still be an issue.

    Love the Yoga suggestion…it doesn’t seem like there’s a reason to *not* do Yoga! 😀

    Carole, thanks again for taking the time to reply. Best of health to you.

  • KPNHLSurvivor author
    4 weeks ago

    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.

  • Ronni Gordon moderator
    3 weeks ago

    Hi @kpnhlsurvivor, Congratulations on your remission. I also had chemo brain and even though I’m 11 years out (from my stem cell transplant for AML) I wonder if I still have it or if some of the things I forget are just normal signs of aging. In addition to yoga, I like calming therapies such as reiki (from a trusted person because it seems like everyone and their brother does reiki). Part of the problem is wondering whether we’re crazy, and then that can set in motion anxiety which would make it even harder to focus. In any case, the answer to whether we’re crazy is a definite no because a lot of other people are in the same boat, so it is actually normal. Hope this helps.

  • Anthony Carrone moderator
    4 weeks ago

    Hi @kpnhlsurvivor, 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!

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