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?

Are Memories Ever Really Lost?

by
Idelle Davidson

That's what a research team at the Massachusetts Institute of Technology wanted to know.  And so to begin, they genetically engineered some mice to develop Alzheimer's disease-like symptoms.  The mice quickly forgot what had taken them several weeks to learn (one task was navigating a water maze). 

Can't Find Your Words? Say: "Chemo Brain!"

By Idelle Davidson

You know it's just on the tip of your tongue.  It's a word that has a "ka" sound in the beginning and a "tah" sound somewhere at the end.  And you can almost see it, but then darn, it's gone.  Perhaps later, when you're rushing to slap dinner on the table, that stupid word, so maddeningly elusive just hours before will pop right into your head, as if it were all just a silly misunderstanding between you and your brain.

I'm guessing that if you've had chemo and have experienced the fog that often follows, then you know what I'm talking about, right?  It's not that you can't comprehend language, it's that you can't retrieve it.  It's like the arcade game with the crane where you try to scoop up the two-penny plastic key chain and then five-dollars-worth-of-quarters later, it's stuck in the chute.

In a 2006 study of the psychosocial side effects experienced by 26 women undergoing chemotherapy for breast cancer, language (including fluency, verbal repetition, reading, and writing to dictation) was the most severely affected cognitive process, followed by memory. (Source: F. Downie, Psycho-Oncology 15 -2006: 921-930).  That's not entirely surprising considering that chemotherapy not only may affect language but the speed in which we process information.

One of the people I interviewed for "Your Brain After Chemo" had this to say: "It is painful when people look at me with confusion while I am trying to talk.  I know that I'm not making sense, and I don't know how else to talk.  When it happens I die a million deaths and feel very dumb."    

Have you experienced word retrieval problems during or following chemotherapy?  Have you found ways to compensate?  If so, what works for you?

Driving, Spatial Orientation (From JBF)

I just finished your book "Your Brain after Chemo".  It was very good.  Thank you for writing it!

Chemo brain was HARD to deal with.  My observations now that I am 5 months out:

1. Driving:  I should not have been driving.  I never had an accident... but I came close too often.  See the next item for more details.

2. Spatial orientation:
I pride myself on being very aware of my surroundings, and my "place in space".  As an example of the problem:  I was driving to a chemo appointment - had done the trip many times - and was totally confused about which exit to take.  Fortunately my daughter was with me and provided the directions.  Very unnerving.  Needless to say, she drove home!!!

Hodgkin's at 20. Needs Provigil (From Kelly)

I would like to begin this email by conveying my RELIEF at seeing this book on the shelf. Chemobrain ("PCCI") really needs to be brought into the forefront and stuck under the collective nose of the oncology community at large, including the NIH and the FDA.

I suppose I should tell you "my story" first so you can understand the impetus for writing this. I had always been "academically-inclined" and top of my class. I was the valedictorian of my high school. I had won countless honors, awards, and scholarships. I had scored a 790 on the SAT verbal, just 1 question shy of a perfect score. My brain DEFINED me. I went to Villanova and I LOVED it. Every moment of it. My mind was finally being opened and challenged in ways it had never experienced. The world was my oyster. I excelled in languages AND science. I was torn between pursuing the law, medicine, or scientific journalism. I had the opportunity to pursue any one of them.

I Appreciate Your Book (From Lori, Esq.)

I would like to tell you how much I appreciate your book - I bought it yesterday, read it all night, with a highlighter, crying.

My breast cancer was diagnosed on October 12, 2006, so about 2 and 1/2 years ago, at the age of 44. There was no history of breast cancer in our family, I was healthy, an avid exerciser, married with children, and had just recently retired to be home more with the kids, after having been an attorney working in a major film studio, supervising a legal department for about a dozen years. I had a lumpectomy, chemo and radiation. I felt lucky to have been diagnosed at the right time, and I had a great attitude. Mentally, I was fine. Then I started with tamoxifen, and within a month, I had horrible menopause symptoms, including mental "fogginess" and disassociation, forgetfulness, and mental confusion (out of body feelings), as well as the horrible night sweats, bloating, etc. The doctors then decided to remove my tubes and ovaries, and switched me to femera.

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.)