Wednesday, August 18, 2010

After Chemo, Changes in Personality and Mood [From Ellen K.]

Dear Dr. Silverman and Ms. Davidson,

I just read with great enthusiasm your book which I hope is the first step toward an understanding of "Chemo Brain."  I am nearly 5-years out from surviving surgery/dose-dense ACT (Adriamycin, Cytoxan and Taxol) chemo/radiation for stage 3 breast cancer.  I was 39 at diagnosis,
and have had my life turned inside out not by the cancer itself, but ironically from the life-saving treatment.  I was fortunate to have Dr. Virgilio Sacchini from MSKCC in NYC as my gifted surgeon, and Dr. Robert Cooper from Praxair Cancer Center in Danbury CT as my oncologist.  I will always be grateful to my medical team for saving my life after I discovered the lump in my left breast in the fall of 2004.  My daughter was 4-years old at the time, and she is my reason for my continued quest to regain my quality of life.

The topics you discuss have all been brought up in the past 5 years to my oncologist; specifically, WHAT HAPPENED TO MY BRAIN?  I look at "Before Cancer" photos and do not even resemble that woman in personality, mood, capacity, etc. at all.  I have lost a portion of myself, and have been told it is generalized anxiety, depression, normal aging, "life", but KNOW that I have suffered a mild form of brain damage from chemo.  I used to stand in the aisle at the grocery store and completely panic at the idea of selecting what I needed.  Also, losing my car, keys, wallet, unable to pull an outfit together for my daughter in her overnight bag if she had a sleepover, bouts of paralyzing depression, rage and uncontrollable sadness.  As I was finishing my radiation treatments, my father was diagnosed with multiple myeloma and died within a year, and my marriage has also failed as a result of subsequent stresses related to the cancer and treatment.  I am a different person today than I was before treatment, and am desperate to find my new NORMAL.

I have tried Effexor, Prozac, Cymbalta, and even Provigil to combat the detrimental effects left from chemo, to no avail.  Even today I struggle with lost vocabulary when speaking, and when I have too many choices I am completely overwhelmed.  Recently, I have been advised by a naturopath to investigate the possibility of adrenal/thyroid fatigue.  I go for saliva and blood tests soon, and am interested to see if this might be a possibility.  It was suggested that I have had a severe iodine issue for years, hence the cancer and mood problems.

I want to thank you for your book, and applaud your efforts in raising awareness of the damage caused by chemo.  There is an enormous population of young women survivors that are struggling to have their voices heard, and to work toward a cure for cancer that will not destroy one's quality of life.
-- Ellen K.

19 comments:

  1. I don't have chemo brain, but really like your blog. You're providing important information. Keep up the good work!

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  2. Ellen and I need to connect. I went through the exact same cocktail of chemo and I am NOT the same person I was before. I have battled with adrenal fatigue and hypothroidism since my last chemo treatment in December of 2007. I was perfectly healthy (outside of the cancer) before chemo and I would NEVER take that stuff again. For the last 4 years I have continuously struggled with my endocrine system and am convinced it is due to long term chemo damage that "they" never tell you about.

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  3. Hi Susie,

    If you'd like to email me privately at IdelleDavidson@gmail.com, I'll do my best to connect you with Ellen.

    Are you by any chance in Los Angeles? If so, there's a "chemo brain" workshop coming up on Tues. evening, Feb. 21st from 7-9 at the Cancer Support Community (I'll be on the panel). The information may help you. Here's the link: http://www.cancersupportcommunitybenjamincenter.org/Calendars/12_0102/Chemo%20Brain.pdf

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  4. I finished chemotherapy a year ago, and herceptin treatments 4 months ago. I thought my brain would revert to normal but it has not. my short term memory is not good - it used to be exceptional- and my ability to recall words as needed is abysmal. I have also noticed some kind of language sorting problems I did not have before-- . sometimes I confuse even words I know or have used many times in the past.

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  5. Hi Anonymous,

    Many of us have experienced those very symptoms so I know how frustrated you must feel right now. I wish I could tell you that there's an easy fix, but unfortunately I don't know of one. My best suggestion would be to practice some of the strategies in our book which really do seem to help. Good luck!

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  6. I had 6 months of Chemo 12 years ago for stage 4 Non Hodgkins Lymphoma, My brain has never been the same, I had all the symptoms described by others above and only just recently have found going off wheat seems to have helped a lot.

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  7. That's very interesting. Did someone advise you to do that? How have your symptoms lessened?

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  8. Our story started last spring when my husband was diagnosed with cancer. He went through chemo & radiation for 6 weeks. Had surgery. Did another round of chemo in the Fall. In October, I started noticing a change in him. He did mention to his Dr. about being edgey. The Dr. said it was probably the steroid they were giving him with the chemo. He has always had a Type A personality and a temper but this has taken the temper to a new level. He can't seem to control his temper anymore. I am trying to be very understanding because I know how hard this must have been to go through. I get so tired of being yelled at all the time but I can live with it. But now it is starting to affect others. Our grandsons were over last week when he had one of his small episodes and they just kind of looked at him like what is going on. They might not have thought anymore about it but I still see the look on their faces. I am at a loss for what to do.

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  9. Have you thought of getting a second opinion? A neuropsychologist may be able to help you and your husband figure out what's going on. Good luck!

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  10. Hi Idelle,
    I just stumbled on your blog from August of 2010 ( After Chemo, Changes in Personality and Mood from Ellen K).....I am so grateful for some validation.
    I finished chemo for stage 4 hodgkins lymphoma 2 years ago and I have not been the same since.
    I am emailing because I am looking for some guidance. I can't get any of my doctors to understand how
    bad I feel.
    Everything that wrote about is what I am experiencing.....I just don't seem to function anymore. The anxiety and depression are thru the roof.
    My ability to retain anything I read is gone. I took the great books class at University of Chicago and had to drop out because I couldn't retain
    or connect the dots on my thoughts....I struggle at the grocery store and with most simple decisions.
    I am tired all the time.....I feel so lost.
    Have you found any solutions?
    Can I get in touch with Ellen K?
    I am so scared and sad....but I am so sick of being scared and sad.
    Looking for any help or guidance.

    Thank you!
    Meg McGuinness

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    1. Hi Meg. I came to this blog as I was searching for information to help my daughter who is about to begin chemotherapy for Stage 2 breast cancer. However, the conditions you describe are a perfect picture of my own struggles over many years, even as I went through 2 graduate programs. In the last one I finally had to take a lesser degree because I just couldn't, as you say, retain or connect the dots well enough to complete it. I believe the brain effects for you and others here are the same for me, though mine apparently have been caused by long-standing inflammation and systemic toxins. I have been undergoing treatment to address these now for 2 years with labs showing steady improvement. I have been treated with a variety of antidepressants & hormones as well as nutritional supplements and advice from various alternative practitioners over the years. I believe what has helped most has been avoiding wheat and using diet and supplements aimed at improving inflammation as well as adrenal and thyroid function, as others have suggested here. I know how you feel and pray that you will not feel that way as long as I did.
      God Bless You,
      Maggie B

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  11. My husband was diagnosed with Hodgkin's Lymphoma 4 years ago. He underwent aggressive chemotherapy and radiation for a year. Immediately thereafter he went into Acute Leukemia, followed by 10-times worse chemo and a bone marrow transplant. He emerged a different person - full of darkness and rage and hate. It is not just depression or anger about cancer. It is a complete personality change. It is the exact opposite of what he used to be. I have asked everyone and looked all over the internet, but I can't find the answer to my question: will this resolve with time? It has already been over a year since his treatment ended. I pray someone has the answer. Thank you so much!

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    1. People react differently to the after effects of chemo. Have you talked with your husband's doctor about this personality change? You might want to ask for a referral to a neuropsychologist to help your husband get to the emotional and/or biolgical cause of his darkness of spirit. You've asked if this will resolve with time. That's also something to ask a neuropsychologist who would be in the best position to make an assessment. In terms of general statistics, the research shows that about 3/4 of people with chemo brain symptoms feel fairly back to normal within two years after treatment.

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    2. He refuses to see a neuropsychologist. But your last sentence encouraged me and gave me hope. Thank you so much. I know there are cases of these extreme responses to chemo. I have heard of them. I wish there was a forum where we could discuss them first-hand. I would like to interact with people who have gone through it.

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    3. This blog is all about helping each other understand the symptoms of chemo brain. Many of those symptoms are extreme. But if you mean you'd like to interact with people who have gone through your husband's specific symptoms of anger and rage, perhaps others will write in. You might also read over the comments in this section and you'll see similar frustrations and stories. Best wishes.

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  12. I'm a seven year breast cancer surviver. I too have deal with what I call a complete change in personality. Before a very spiritual person, friendly and outgoing. Now spiritually dead and don't prefer to be around anyone but my kids. I'm on hormone replacement and thyroid meds. Don't like anti-depressants. Just keep praying God will help.

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  13. Oh Alana....this is exactly what my husband is going through. I wish I could understand. I wish there was a book written about it. He has pushed me out of his life. He just wants to be alone, except for time with our adult children. I sure need a lot of advice! Thank you for your insight Alana. It has truly helped.

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  14. Oh brother! I just realized this blog has a book about this very topic. So thankful!!

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  15. Alana, Is there anyone you can speak with about this? If you were spiritual in the past, what might help, at least in terms of mood, would be to think about those things you are grateful for. That can help combat depression. Think about your kids and anyone else in your life who might bring you joy. Think about those who love you and need you. Have compassion for yourself. You've been through so much. Good luck.

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