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.
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.
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I don't have chemo brain, but really like your blog. You're providing important information. Keep up the good work!
ReplyDeleteEllen 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.
ReplyDeleteHi Susie,
ReplyDeleteIf 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
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.
ReplyDeleteHi Anonymous,
ReplyDeleteMany 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!
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.
ReplyDeleteThat's very interesting. Did someone advise you to do that? How have your symptoms lessened?
ReplyDeleteOur 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.
ReplyDeleteHave 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!
ReplyDeleteHi Idelle,
ReplyDeleteI 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
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.
DeleteGod Bless You,
Maggie B
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!
ReplyDeletePeople 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.
DeleteHe 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.
DeleteThis 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.
Deletei went through chemo in 2005 trial study of 4 round of strong chemo drugs and i still have memory and anger problems. im glad im still alive but life was never the same and none of my doctors help or give me answers of the things i still suffer from. physical and mental, i hate the anger problem i feel like a volcano erupting and no matter how bad i feel behaiving that way i cant control it. i think doctors will not help because they dont want to get involved in agreeing that is the cause of the problem for finacial reasons. my whole body is still weak as soon as i went back to work 1 month after chemo and went to have radiation treatments after work, i didnt have the strength to climb stairs so i stopped going to the bathroom at work, bathrooms down a flight of stairs, my toenails fell off, i had blisters all over the bottom of my feet, when driving to the clinic or home i would forget where i was and get lost. could not follow the recipies expect of me at work, i was a baker, buy the way my treatment was for breast cancer stage 3 on right breast and im right handed, and my right hand just out of the blue would realeas and i would drop whatever was in my hand , and still do, the driving thing is better but my brain is awful anyone tells me anything and i forget it that day it scares me my daughter tells me i didnt have the horrible anger problem befor chemo and sister and daughter tell me my memory is worse, i know it is but to what extent i cant tell, myself. so i have no answers only questions, and i uderstand how awful it makes your husband feel, and how depressing it is. my arm and armpit hurt all the time even my wrist and hand while im typing this. goodluck
DeleteI'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.
ReplyDeleteOh 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.
ReplyDeleteOh brother! I just realized this blog has a book about this very topic. So thankful!!
ReplyDeleteAlana, 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.
ReplyDeleteWow....I thought I was the only one..
ReplyDeleteI haven't ever talked to anyone about the things I'm going through and the change in me...I keep waiting to get back to normal, but maybe this is normal...sigh...I'm depressed, don't enjoy anything, can sleep all day...have no energy or want....I'm a total different person....and it bugs the hell out of me!
i totally understand, im the same way it is the new norm for me, but after 12 years i no now it is the norm for me but still cant accept it its to depressing to be so disabled now.
DeleteI had ACT chemo ten years ago, dose-dense. I have had so many problems since. I have a dx of "chemo brain" and PTSD. I was doing well before chemo, had a master's degree, goals, a job. Now I can't work and I struggle with sleep and keeping myself stable. Meds have rough side effects. I think chemo did this do me. I can't help it, this is the dividing line for me. I was fine before letting it into my body, and I am not the same since. We need someone to do the studies and support what survivors are saying, and we need settlements, bc I have lost a lot of year so of work and my financial future is slammed now. Disabilty is minimal to live on. This is not my fault.
ReplyDeletei agree with everything you said, and cant work because of the affects but i know of no physician that will say, it was the chemo damage, only my arthritis specialist has agreed with me. its depressing when docs just look at you and will not blame this drug for the permante changes in you. also though i dont think they couldnt because then how would they treat the cancer? we would just die without the treatment that has left us disabled and suffer its better to be alive i can see my grandaught grow up. i was 50 when i found my tumer and i had mamo grams 2 years befor and even four years befor and my surgon told be i had it from 6 to ten years befor i found the tumer, my doctors never found it.
DeleteUPDATE since my last post 3 years ago about my husband who went through Lymphoma and Acute Leukemia. His chemically-altered mind worsened. He is much more angry and aggressive. He left me. Found an attorney to file for divorce. The aftermath of the chemo has ruined our entire family.
ReplyDeleteThank you for your blog. I am about11 months from last chemo for stage4 endometrial cancer. I am 38 and feel like a crazy person. My mood swings are horrible. I get enraged so easily over everything. The chemo brain makes feel so incompetent. Lots of people have told me about depression afterwards and worrying about recurrence but that's not my issue this is the first time I have known others have the anger and confusion. Thanks you for letting me know I'm not insane
ReplyDelete