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Chemo Brain Lawsuit - Neurotoxicity

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I have permanent chemo brain since starting treatment 2013 from taxotere and Cytoxan - I am pissed because there is no warning label for this - I would have made other choices if I knew this. It is diagnosed as neurotoxicity. I hired an attorney and filing the first lawsuit against the pharmaceutical companies.  My lawyer said if other people are interested, please contact me.  It makes the case stronger if other people join in this fight  and the pharmaceutical companies cant get away with this.  Please email me at chemobrainlawsuit@gmail.com. If you have been suffering or know someone else that has been, please email me.

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  • moderators
    moderators Posts: 7,911
    edited December 2016
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    chemobrainlawsuit, we are sorry that this has happened to you. We sincerely hope that with time, this will get better.

  • 70charger
    70charger Member Posts: 591
    edited December 2016
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    what all symptoms do u have?

  • lintrollerderby
    lintrollerderby Member Posts: 70
    edited December 2016
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    I had four rounds of Taxotere and Cytoxan and can say that it definitely caused (seemingly) permanent chemobrain. I'm five years out and still have long-term loss of my short-term memory which was excellent pre-chemo, inability to focus, inability to multi-task (used to be a strong suit of mine), frequent word drop issues, etc. I've been upset for years that I have continuous issues. It's one thing if I'd given informed consent, but it was never mentioned to me that this might never go away. Chemo also caused permanent joint pain and neuropathy as well.

  • Jemever
    Jemever Member Posts: 3
    edited December 2016
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    I too have side affects from chemotherapy, which have reduced my quality of life considerably. I was a fit for age senior person, (78), able to drive, shop, care for my home, garden, walk for fitness. No health issues at all. After 5 rounds of chemo, Pacletaxol, I developed neuropathy in feet, and weakness in both legs, particularly the right leg, which has left me considerably reduced in normal function. Unable to drive, or garden, or really function at all to the capacity I had previously. I read on this site that if one is over the age of 65 years, for every 5year period after; the side affects can compound. My oncologist I think was reluctant to conclude that the chemo was the cause, but I have now had every scan and test to rule out any possible other explanation. I have consulted a Professor of Neuropathy, who has said that the only explanation is the chemotherapy.

    I do think that more should be given in the way of warning about side affects.

  • claireinaz
    claireinaz Member Posts: 679
    edited December 2016
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    Yes, short-term memory and ability to call up words in my lexicon as quickly as I did before. More difficult to concentrate, focus, and keep attention on something. It happened really overnight.

    I knew about the side effects beforehand by reading discussions here. But decided the side effects were better than letting c have its way with me, without fighting it with the tools I had.

    Claire in AZ

  • jackster51
    jackster51 Member Posts: 139
    edited December 2016
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    I have not been able to read a book for 5 years, since Taxotere/Cytoxin. Something I did weekly for 20+ years. I just can't make it past the first paragraph before loosing concentration. I also have permanent baldness from Taxotere, which they also did not warn us about :-(

  • gardengypsy
    gardengypsy Member Posts: 499
    edited February 2017
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    I went for an extensive neuropsych eval last week and waiting for results. The symptoms began just after the first round of AC. A year later, things are really tough and I am about to stop working. I feel like I truly have "brain damage."

    Let's call it what it is. Do people take the phrase, "chemo brain" seriously? I think not.

  • Nursie
    Nursie Member Posts: 7
    edited February 2017
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    Me too, I have beeen very upset about my brain function since chemo (last treatment 5/15). How do you know yours is permanent? Everywhere I read says it improves with time?

    I was asked to step down from my administrative position at work due to chemobrain, and had to work less hours as well.

    I have debilitating depression and my psychiatrist and neurologist are recommending neuropsychology testing to evaluate brain function.

    Memory loss is what plagues me the most because of the embarrassment and fear it causes me. Like I am blacking out almost and don't remember doing or saying things. I don't drink at all, but it feels like that.

    Also, headaches. I hate the headaches.

    But I am grateful to be alive and in remission! I feel like I shouldn't complain

  • Nursie
    Nursie Member Posts: 7
    edited February 2017
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    hi garden,

    My doctors are recommending neuropsych testing for me too. Was it covered by your insurance?

    And no! Nobody believes it is a real thing and they think it's a joke. It's demeaning.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited February 2017
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    Yes, nursie, my insurance paid for it. Results in one week.

  • macb04
    macb04 Member Posts: 756
    edited February 2017
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    I have chemobrain for sure. I loose words, not alot, but enough to be embarrassed. I'll know what I want to say, but can not find the words. For instance, I might want to say "shoe", I could tell you it has laces or straps, its something you wear on your feet, ect, but at that moment, for the life of me, I can't find and say the word shoe. It's like periodically, my verbal fluency is stripped away from me, and instead I am handed a box with a jumble of words, and I have to start sorting through the words, one at a time, till I find the right one. For people who don't know that I was abused by the bc industry, I sound nuts the way I suddenly pause in the middle of a sentence. It frightens the hell out of me. I have read there is more dementia after chemo and tamoxifen

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3120018/pdf/nihms-290572.pdf

  • macb04
    macb04 Member Posts: 756
    edited February 2017
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    I have chemobrain for sure. I loose words, not alot, but enough to be embarrassed. I'll know what I want to say, but can not find the words. For instance, I might want to say "shoe", I could tell you it has laces or straps, its something you wear on your feet, ect, but at that moment, for the life of me, I can't find and say the word shoe. It's like periodically, my verbal fluency is stripped away from me, and instead I am handed a box with a jumble of words, and I have to start sorting through the words, one at a time, till I find the right one. For people who don't know that I was abused by the bc industry, I sound nuts the way I suddenly pause in the middle of a sentence. It frightens the hell out of me. I have read there is more dementia after chemo and tamoxifen

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3120018/pdf/nihms-290572.pdf

  • PatZy
    PatZy Member Posts: 6
    edited February 2017
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    I have been afraid to say out loud how I have been feeling.  I'm embarrassed at work but have a very good support group there that gives me helpful hints when I can't get the words out.  I can function, but if you ask me what task I just completed, I probably can't tell you.  But if you ask me tomorrow, I might remember.  Short term memory is not good.  Loss of words, sometimes confusion.  I get to work and can't remember what route I may have taken.  This scares me most.  Will I get lost at some point?   I have a great neuro oncologist.  Things happen and we deal with them 1 by 1.  I am afraid of MS also. 

  • gardengypsy
    gardengypsy Member Posts: 499
    edited February 2017
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    Pat~ I am nine months out from chemo and I am struggling with cognition as well. My recent test results from Brigham and Women's showed deficit in processing speed, verbal fluency, short term/working memory and frontal lobe/executive thinking skills such as planning and decision making. Besides the chemo itself, they added that debilitating amounts of neuropathic pain and fatigue as contributing to all this.

    The person who did my evaluation suggested Speech-Language therapy, Mindfulness practices, exercise, self-care and upping my dose of antidepressants.

    I have to believe I am going to get better!

  • Cif
    Cif Member Posts: 3
    edited May 2017
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    delted

  • sneal
    sneal Member Posts: 1
    edited June 2017
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    I am 11 years post op bilateral mastectomy. I suffer from short term memory loss, fogginess, difficulty coming up with words causing fatigue. I thought over time these things would get better, but hasn't I am interested in pursuing chemo brain lawsuit.

  • cherriroberts
    cherriroberts Member Posts: 2
    edited July 2017
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    I'm sorry that happened to you. My niece is severely affected. I need to join in this lawsuit she was a successful member of society. Now she can barely string a sentence together. I sent you an email. Cherri

    (Edited by Mods to remove user's personally identifiable information)

  • cherriroberts
    cherriroberts Member Posts: 2
    edited July 2017
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    Oh yeah. My niece has made three suicide attempts since 'treatment'. Use caution please. I had no idea they were allowed to destroy her brain. I'm suing.


  • moderators
    moderators Posts: 7,911
    edited July 2017
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    Dear cherriroberts,

    We are so sorry that your niece has had such a difficult time. Please let us know if there is anything we can do to help you to navigate around the community. The Mods

  • Shiliara06
    Shiliara06 Member Posts: 2
    edited January 2019
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    I was wondering if the lawsuit was still in effect. I too suffer from chemobrain, I finished chemotherapy in March of 2018 and my life has not been the same since. It is falling apart I can't keep up with appointments and I had to leave my job. Can someone please reach out to me with more info.

  • Shiliara06
    Shiliara06 Member Posts: 2
    edited January 2019
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    I was wondering if the lawsuit was still in effect. I too suffer from chemobrain, I finished chemotherapy in March of 2018 and my life has not been the same since. It is falling apart I can't keep up with appointments and I had to leave my job. Can someone please reach out to me with more info.

  • Sparky3041
    Sparky3041 Member Posts: 1
    edited February 2019
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    I received all the information on the drugs I would be taking. My children strongly urged me to take chemo so I did. After 1 round I thought i was losing my mind. When I recovered I got out the paper work and reread side effects. I explained to my children the side effects and that there was no guarentee it would extend my life anyway. I had no more treatments but still have weird mind issues. Now I have developed asthma. Could that be from radiation? I am 4 years clear

  • moderators
    moderators Posts: 7,911
    edited February 2019
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    Shiliara06 and Sparky, we want to welcome you to our community here at Breastcancer.org!

    We hope you will hear from other members soon. In the mean time, please let us know if you need any help from us, Mods.

    Please stay connected and keep us posted on how you're doing.

    Best wishes,

    The Mods

  • PatZy
    PatZy Member Posts: 6
    edited August 2019
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    I am back after a terrible year of trying to sort out my problems. Chemo Brain is alive and well. I've done 2 rounds of P.T., had 2 MRI's and gone off - then on - then off - Lyrica to stem the side effects of that drug. I remain on Cymbalta for pain and attitude. After weaning off Lyrica, other problems that it was trying to correct became evident. I began to feel dizzy and vomit almost every day. Working is becoming a problem, but I need the insurance plan as the drugs are soooo expensive. Now I am on Prednisone a steroid to try and fix the inner ear problem caused by the toxic chemo. My chemo ended in 2016 and I am getting worse, not better. But, still, when I hear about a death due to cancer, I feel like the luckiest person to be alive. I am a Warrior in this fight and I will not give up! I hope you all feel the same way.

  • simbobby
    simbobby Member Posts: 94
    edited August 2019
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    I am 1 1/2 years post chemo. I’m still halted mid sentence for loss of the simplest of words. It’s gotten better than it was but my kids still notice it occasionally. My job moved me to a position of less stress and less responsibility. But the necessity of having to learn a new job with an entirely new skill set has been more stressful than the previous job. But I’m here.


  • PatZy
    PatZy Member Posts: 6
    edited August 2019
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    Good going Simbobby. I did a diep flap reconstruction, right side and reduction on left. I am happy about it, but its not even. I don't care as I am in late 60's and look better than I ever did with my new smaller breasts. I hope you continue to warrior on and don't give up. It might be annoying, but it's all manageable. Good luck to you.

  • MzzHope
    MzzHope Member Posts: 9
    edited September 2019
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    I am many years out and still have joint/bone pain and cognitive dysfunction that relates to short term memory loss and word recall. But my oncologist was very clear about all of the side effects ...and that they could last for months or even years after treatment. I decided that I wanted to be aggressive as I could be in the treatment of this disease.

  • SeattleSunshine
    SeattleSunshine Member Posts: 9
    edited September 2019
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    this is why I afraid to start chemo at 67 years. Hope you get traction with your lawsuit. Chemobrain is not taken seriously enough

  • SeattleSunshine
    SeattleSunshine Member Posts: 9
    edited September 2019
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    so sorry that even one treatment did this to you