Is "Chemo Brain" a Disability Under the Americans With Disabilities Act (ADA)?

People often report debilitating cognitive issues following treatment for cancer.  I wondered, are there legal protections available to them if they can no longer work?

To find out, I spoke with Joanna Morales, an attorney and the former director of the Cancer Legal Resource Center (CLRC), a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles.
The CLRC provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.  I hope you find the information helpful.  -- Originally published in 2010 but worth repeating.

Making the Cognitive Leap: Exercise is Good for 'Chemo Brain'

By Arash Asher, MD

Director, Cancer Survivorship and Rehabilitation

Samuel Oschin Comprehensive Cancer Institute

Cedars-Sinai Medical Center, Los Angeles, CA

Fortunately, the scientific community has come a long way over the last several years in better understanding chemo brain, its causes, and how it can really impact a cancer survivor's life.  Unfortunately, we have much more work to do in learning about effective treatments for this problem.  

Hypogonadism (Decreased Hormones) in Male Lymphoma Patients After Chemo

From "J"

One lymphoma-related male issue is that of hypogonadism, where the testes produce decreased or no hormones.

In a paper in the British Journal of Cancer (2009), a group in Norway found (I'm trusting my memory here so be warned the details may not be exact but the principle is) that about 40% of men over 50 treated for lymphoma were hypogonadal. This can be a late side-effect. They compared patients with and without radiation.

I had been having hot flashes and fatigue and thought my thyroid was messed up. My primary care physician is an endocrinologist and correctly identified the problem. Testosterone levels were running on fumes. Admittedly the seminal article (pun intended) from Norway which had large numbers had just been published. I hope oncologists are checking testosterone levels in men post chemo for non-Hodgkin's lymphoma and Hodgkin's lymphoma. If you are only borderline low you'll have to fight with your insurance company but citing the BJC article may help. -- "J", non-Hodgkin's lymphoma

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A Response From

Dr. Dan Silverman

Thanks for shining a light on the problem of endocrine hypogonadism that is, unfortunately, not uncommon among men who have been treated for lymphoma.
As you have indicated, men who are over 50 years old are especially vulnerable to it, suffering from this condition about five times more

A Breast Cancer Survivor Asks: Will My Mind Return to Normal? [From Susan]

Hi,
I was diagnosed with breast cancer over seven years ago and underwent a lumpectomy, chemo and radiation.  Immediately after my first chemo, I experienced severe difficulties remembering things and felt like I was definitely  not on top of my game.  I was immediately placed on disability for my "cognitive deficit"  because I was unable to perform my job as a medical sales representative. I have been seen by many specialists, including a neurologist, neuropsychologist and even had brain scans. I have gone to physical, occupational and cognitive therapy.  Basically, I have suffered loss of a job, a financially secure retirement, loss of respect from family and friends because they have no idea what has happened to me.  And although I have tried to advocate for gaining back some brain cells...I have become very discouraged. Will I ever get better?? -- Susan

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 A RESPONSE FROM 

DR. ROB FERGUSON

 Hello Susan,

You are certainly not alone.  In general, it is believed about 40% of people who have had chemotherapy can have mild to moderate dysfunction with memory and/or attention, well beyond the time of last chemotherapy.   Evidence from research suggests these problems do not get progressively worse, such as might be expected with forms of dementia or Alzheimer's Disease.  However, some research suggests these problems are long lasting over years.

Questions About Memory Loss From a Hodgkin's Lymphoma Patient

My story is a brief one, but I sense a need to spell out what is not told to patients by many oncologists.

I was diagnosed with Hodgkin's lymphoma a little over a year ago after I had experienced symptoms about 18 months ago with primarily weight loss.  I was in great physical shape and doing  a lot of hiking.

The treatments of ABVD (Adriamycin, Bleomycin, Vinblastine, and Dacarbazine) began in August 2009, and it was shortly after that my brain began changing.  I had a history of retaining names, ideas, concepts, book titles and past experiences, but began to forget many things I once experienced.  By the time I finished my chemotherapy sessions in February 2010, I was definitely different because of what I had forgotten, and what I consistently knew before and could no longer remember.

Your Brain After Chemo is absolutely a vital resource in providing ideas for recovering some of my memory that has simply disappeared, as if I had entered a twilight zone during chemo sessions. My memory was so affected by chemotherapy drugs, that even though much long-term memory is still there, many memories of names of people whom I met and titles of books I have read during the past few years suddenly were forgotten.  My brain could simply not retrieve them when I got into conversations with friends and wanted to speak of a person or a book, even though I remembered some content and experiences. 

I am retrieving short-term memory slowly and with practice and re-reading, but I always wonder: What is considered normal memory loss after certain specific chemotherapies?  

Second question might be: Why is it that many patients are not told of this potential memory loss BEFORE they enter chemotherapy?  Why is it not normal protocol for oncologists to mention cognitive and brain functions are affected?

I still do much physical activity, I once even hiked 4 miles in between chemo treatments, but my normal astute brain functions seem to recover slowly at times, and some times rapidly, depending on the day, on sleep patterns, on reading habits, on memory exercises and on dietary intake.

Thank you for writing the book and for this opportunity to share an experience on the mental side effect of my Chemotherapy.

Lorenzo C

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A RESPONSE FROM

DR. DAN SILVERMAN

Thanks for sharing your experience, Lorenzo, as well as for your feedback on Your Brain After Chemo.   

Regarding your questions, first, there really is no "normal memory loss" which we can cite... the experiences of patients even with a given

A Spouse With Brain Fog (From Michelle)

Hi,

My questions are from the perspective of the well spouse or family member: Any tips for caregivers/spouse/family in terms of coping with/confronting/discussing this chemo brain issue with our loved one? Also, are there safety issues for parenting while experiencing fog?

Questions About Memory? Ask Dr. Silverman

Dan Silverman answered readers' questions in the New York Times Consults Blog on August 6-11, 2009.  The questions are paraphrased here.

#1 Question from Bob H:
In 2002 I was diagnosed with squamous tonsillar cancer. I went through a neck dissection with 41 lymph nodes removed. I also had radiation treatments and chemo (cisplatin). I haven't been the same since. I have trouble gathering my thoughts and recalling information. Organization is also hard for me. Neuropsychological testing showed my memory is severely impaired. What treatment would you suggest? I am 54 years old. Thank you.

Dr. Silverman responds:
Bob, your experience of never feeling "quite the same" after treatment for cancer- particularly with respect to organizing your thoughts ("executive function") and memory is, unfortunately, not uncommon. The treatment plan that would be most appropriate for you would have to be guided by more of the specifics of your individual medical history and current problems than is possible to examine in this kind of blog forum.

Generally speaking, though, there are numerous tools available to optimize your cognitive function after undergoing therapy for cancer. These include:

1. Employing strategies to fully synchronize your body's biorhythms with your sleep-wake cycle. As we emphasize in the "Nine Daily Steps" program and in the "Sleeping through Insomnia" chapters in our book, the main issue concerning sleep is not about getting "enough" of it, but of getting the right kinds of it, and especially of using your sleep-wake cycle as a tool for manipulating the biorhythm pattern maintained by your brain.

2. Food (and drink) that essentially bathes your brain in amino acids and co-factors for key enzymes used in synthesizing neurotransmitters, fuel sources for recharging your brain's "batteries" (electrochemical gradients maintained by the cells of our nervous system), and natural antioxidant and anti-inflammatory compounds to protect your brain from accumulating new damage. In other words, food and drinks should not be just "nutritious," but specifically directed to benefiting brain function.

That's why, for example, we recommend drinking coffee (not a food people generally put on their "nutritious" list) and some other stimulant beverages, and why we provide specific guidance on how to choose among the wide range of "nutritious" foods that people could possibly consume, as well as dispel some myths about certain foods being "bad" for you, particularly when the central goal is to improve your cognitive abilities.

3. Building neuropathways that reinforce and develop healthy mental, emotional, and social functioning;

4. Judicious use of specific prescribed drugs to further enhance cognitive function; and

5. Addressing symptoms like anxiety and depression that can exacerbate cognitive problems and lead to "vicious cycles" that impair cognition and deplete energy from your brain (and the rest of your body). The depleted energy plus impaired cognition, in turn, deepens symptoms of depression and leads to more anxiety, etc.

Techniques for accomplishing each of these objectives are detailed in our book, "Your Brain After Chemo," which also contains an appendix that will point you to many additional helpful resources.
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#2 Question from Dionne
Can people experience chemo brain during chemo or does it happen only when treatment is complete? My sister is in treatment now and having problems. Many Thanks.

Dr. Silverman responds:
Dionne, it is common for people to begin to experience cognitive symptoms while still undergoing chemotherapy, as your sister has begun to do ... some of them have completely recovered, some have partially recovered, and some have suffered persistent impairment of their cognitive abilities for a long time (10 years or more).

As those symptoms can comprise the single biggest impediment to regaining one's quality of life even after there is complete recovery from the cancer itself, your sister stands to benefit from being well-informed on how to use all the available tools of our present knowledge (however limited they, and our present knowledge, may be) to prevent whatever symptoms can be prevented, and to accelerate her recovery from whatever symptoms that may have already developed.
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#3 Question from Catherine
Prior to treatment I had a very high functioning position with lots of responsibility. Then came chemotherapy and stereostatic radiosurgery and now I can't remember phone conversations two seconds after I hang up the phone. Would appreciate your comments.

Dr. Silverman responds:
Thanks for sharing your experience, Catherine. It typically has been the people who are highest functioning to begin with, and who have the highest level of professional responsibilities, who suffer the most from cognition-altering syndromes after therapy for cancer. Fortunately, the same intellectual gifts and inner resources that allowed you to be high-functioning before therapy, which are currently buried under a layer of "chemo-dust" (the after-effects of the corrosive power that chemotherapy has exerted against your cancer but, unavoidably, against some of your body's normal tissues as well), can also serve as your ally in aiding your recovery from those symptoms once you begin to clear the dust ... a process that may be accelerated by some of the methods mentioned in Your Brain After Chemo.
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#4 Question from Dennis
Ten years ago I went through 80 weeks of interferon three times a week along with 1200mg of ribavirin to treat hepatitis C. Before the drugs books stuck with me and years later I could quote them back. Now I can't remember what I read and learning is a slow process. I also can't remember why I walked into a room or what it was I was trying to find. Doctors have told me that my experiences are not related to chemo and even if they were I would have been back to my old self by now. I would be in a complete fog, walking around in circles if it weren't for sticky notes.

Dr. Silverman responds:
Dennis, see my response to E. Culli, below. I address the same concerns there.
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#5 Question from E. Culli
Prior to being treated with interferon and ribavirin I was a courier in the St. Louis area and now I have lost my sense of direction. In fact last month I got lost on the way to my doctor's office in Lexington, KY and went into a panic attack because I got so turned around and I couldn't figure out the map. I was two hours late. Reading is also a major problem. If I put the book down before I'm done, I have to back up a couple of pages to try to remember the story. Three months later I can read the same book and not remember how it ends. Looking on the bright side, I guess I can save money on books because they're always new to me. What do I do about my memory?

Dr. Silverman responds:
Both you and Dennis (see question #4 above) experienced cognitive deterioration after undergoing ribavirin therapy. Just like certain drugs that are commonly used as chemotherapy agents in the treatment of cancer, ribavirin is a "nucleoside analog" - a class of drugs resembling nucleic acids, which interfere with synthesis of DNA or RNA, or both. And just like many chemotherapy agents, ribavirin can cause side effects like gastrointestinal distress, anemia, hair loss, weight loss, fatigue, mutations leading to birth defects and generalized discomfort. Use of the drug in patients undergoing treatment for viral infections has also been associated with depression, insomnia and impairment of memory and concentration.

Though doctors may say to either of you that what you went through "was not chemo," your brain may feel that's a "distinction without a difference." And for doctors to say that "even if it were you would have recovered by now," requires them to ignore the many other people who are also 10 years out (or longer) from their last dose of cancer therapies but who continue to have problems with memory, concentration and other cognitive abilities.

The bottom line is this: though it is not uncommon, unfortunately, for the kinds of symptoms you have experienced to be trivialized or brushed aside by some doctors - whether occurring after chemotherapy for cancer, or after ribavirin+interferon therapy for hepatitis C - it doesn't mean that your symptoms are not entirely real, and it doesn't mean that they are not related to the therapy you received.

It may mean that you need to talk to a different doctor, one who will take your symptoms seriously and steer you towards therapeutic approaches aimed at achieving your recovery from them. In the meantime, as a head-start in addressing the issue, "how do I get my memory back?" please see my response to Bob H.'s comment (#1), above.
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#6 Question from Brian of Calgary, Alberta, Canada
Wouldn't problems with concentration, setting priorities, word retrieval, multitasking, and following instructions, etc. be signs of brain injury? What do neurologists and neuropsychologists say about this?


Dr. Silverman responds:
Yes, there are certainly similarities to symptoms suffered by patients with brain injury, which likely reflects that a variety of different mechanisms can lead to diminished function of the same areas of the brain. (Our own research collaborative groups include five neuropsychologists who specialize in cancer-related cognitive dysfunction or in assessing and treating various forms of mild cognitive impairment, and we are also in close contact with neurologists and neurosurgeons, some of whom collaborate with us specifically on the study of brain injury, and others with whom we collaborate in the field of neuroimaging assessment of mild decline in cognition.)
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Question#7 from Sara of New York, NY
My father beat tonsil cancer five years ago after going through surgery and extensive chemotherapy and radiation treatments. I've noticed since that he developed problems completing sentences, concentrating and multitasking. And now he has been diagnosed with small cell carcinoma in his left lung and he is in the end stage of his life. I would like him to be able to communicate his last wishes but because of his problems articulating, it has been difficult for him. How can we help him? Would holding his hand instead of trying to get him to speak be an effective strategy as it might help him process information and put him at ease?


Dr. Silverman responds:
Sara, your father's unfortunate condition is quite complicated - both from an oncology standpoint (two different cancers; treatments by surgery, radiation and chemotherapy; presence of late-stage disease and its complications) and also from a neuropsychologic standpoint (multiple years of decline; multiple areas of cognition affected), much of which may have little to do with his cancer and its treatments.

Without a lot more details, it is difficult to know in which of several possible directions to guide you - for example, whether he would benefit from speech therapy, treatment with medicines used to treat dementia symptoms, professionals from the hospice community, working with communication specialists like those who help stroke victims who have permanently lost their ability to speak, etc.

If your father has not had a recent assessment by a neurologist, who could gather and integrate all the pertinent information pertaining to his current situation and then make appropriate referrals, that would be a good place to start. And certainly, establishing an intimate connection by such things as holding his hand could be beneficial for him and for you. (If he happens to be immunosuppressed, just remember to wash your own hands before and after.)