Chemo Post Traumatic Brain Injury

marciandpam

I was diagnosed with stage 2 breast cancer in August of 2016. Due to a severe allergy to steroids, my treatment options were limited. I had two different rounds of chemo that lasted almost seven months and then six weeks of radiation. After the second chemo CMF treatment, I began to experience significant memory issues. I couldn't pick out the silverware drawer in our kitchen. I didn't remember details of or the conversations I had with my spouse and others. I stopped driving because I couldn't pay attention to all the activity on the road.

I reported this to my oncologist right away. The symptoms worsened. I went on to finish my treatment. After radiation, I began working with the Brain Fitness Center in Countryside. The initial testing showed my cognitive deficits were as real (and worse) than I'd suspected. When I met with the doctor, he asked if I'd ever had a Traumatic Brain Injury. I had, some 45 years ago, but no one called it that back then and no one understood the congnitive impact. He went on to explain that I could never have had such a successful career as a nonprofit financial consultant, nonprofit CFO recruiter, trainer,speaker and coach without my brain creating elaborate workarounds. He said chemo basically wiped them out. I was starting over from scratch. My oncologist said that this was absolutely possible to explain the level of chemo brain that I was experiencing.

I worked their program for the full 25 sessions. Though there were improvements in many areas, I still cannot juggle more than one thing at a time when I used to be able to manage three. My brother points out that juggling one thing is not actually juggling... Although I was given permission to drive again, I am no longer driving. In addition, my verbal memory is quite low and my reaction times are inordinately long. I have also gone from a fair level of neatness to disorganization.

I am wondering if anyone else with a prior traumatic brain injury has experienced deep cognitive deficits AFTER chemo - and what they've done to address them. Did you work with a neurologist? Anyone else?

I've searched the web and found very little. Any light someone could shed would be deeply appreciated.

Thanks so much,

Marci

Moderators

Hi Marci and welcome to Breastcancer.org,

We're so very sorry to hear of the difficulties you're experiencing, but we're really glad you found us. You very well may encounter others here who are experiencing something similar, though it sounds like quite an unusual and unfortunate case! How terrible for you to having to deal with this. We wonder if there may be some tips on the Memory Loss side effect page from our main Breastcancer.org site that could help?

Also, it may benefit you to also post on the Breast Cancer with Another Diagnosis or Comorbidity forum, where others who are managing another physical ailment along with their breast cancer discuss their experiences.

We hope this helps and we hope you find some support here! Please come back often, ask questions, and get the support you need. We're all here for you!

--The Mods

Beatmon

Gosh, I’m so sorry for what you have come through. Wish I could help

Icietla

Welcome, marciandpam. I am so sorry about all you are experiencing. It is a devastating loss, I know.

I have not had Chemotherapy. My brain damage and other permanent neuro complications are from a demyelinating disease. I think (?) it has been near ten years since it was finally diagnosed and my treatment started. My improvements have come only very slowly.

Everything takes concentrated focus to get through. I can deal with only one thing at a time, and only slowly. I get confused and bothered by too much (more than one thing) going on at once. I can drive in the daytime if I need to, but I would never try driving with a passenger or passengers, because they might speak.

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Mar 28, 2017 04:26AM - edited Mar 28, 2017 04:46AM by Icietla

[...]

Among my other neurological complications are my memory problems, especially as to short-term memory [As some examples, often I immediately and completely forget conversations and other experiences and information until specifically reminded of them; and sometimes reading is very slow and difficult for me because I cannot remember my way through reading a sentence (by the time I get to the back end, I have forgotten everything about the front end, and it can take me many more tries over at reading through any single sentence to remember my way through and understand it)]; frequent long struggles for word retrieval; variable tinnitus; frequent balance problems; proprioception problems, so I must always be in lighting and keep battery-powered lighting devices around in case of power failures; very easy startling; noise sensitivity-to-intolerance; and my sense of time – especially but not only calendar time -- being so different from before. My ability to communicate in language has also got appreciably better from the worst of it some nine years ago. My abilities are variable but only limited anyway. [My sincere apology if my writing is incoherent.] In short, as to my cognitive impairment, it is all very like traumatic brain injury, because it is clearly brain injury, but injury by (disease) chemistry means. [...] Also, much of the time I am extremely tired, and I am always at least very tired.

[...]

https://community.breastcancer.org/forum/69/topics/763459?page=56

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Mar 18, 2018 08:00AM - edited Mar 18, 2018 08:04AM by Icietla

Hi Mudd. I take mine at 7 pm. That is nearly always a while after my dinner.

I have memory challenges -- especially with but not only with short-term memory. My husband has a daily reminder alarm function set on his cell phone to remind us that it is time for my Letrozole. As I take the pill, I put a little mark on a date planner calendar there to signify that I have taken my Letrozole for that day. My husband observes and reminds me (as I may need it) to mark the calendar. Soon after that time, I start wondering whether I remembered to take it, so I have to check the calendar for that indication. I make other marks on the calendar to signify dosing with other medicines with which I need to follow my dosing.

N.B.: My memory issues are unrelated to and had long preceded my Letrozole treatment.

https://community.breastcancer.org/forum/78/topics/726592?page=323