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

Physical Exercise Helps With Chemo Brain

by 

Idelle Davidson

Physical exercise is hugely important in recovering all those marbles we somehow lose during cancer treatment. Exercise increases blood flow (and oxygen) to the brain. In laboratory studies, animals that exercise regularly create new neurons in the hippocampus. That region of the brain is key to forming memories.

A Moment of Intense Disability...A Connection to Alzheimer's? [From Lois]

Last Friday night I attended a local showing of 2 films, one about mental illness and one about breast cancer. I had been looking forward to speaking with a person involved in the making of those films, and I was taken aback when I spoke with her because that brief opportunity turned into a chemo brain experience. I could barely function, and I was trying as hard as I could. She is an exceptionally sensitive and intelligent woman and recognized that I was having trouble and did her best to make the moment comfortable for me and accept me.

Vsion Went Black After Chemo -- Just for a Few Minutes [From Lois]

When I was diagnosed in 2002 I did not understand why no one seemed interested in determining what effect chemotherapy might have on the brain and the nervous system. When I asked my onc, his response was that in his decades of experience with it, "only a few had been totally disabled" by it. This is a guy who is beloved by physicians and patients alike.

Colorectal Cancer Survivor in N. Carolina Needs a Doctor's Help. Any Suggestions? [From Connie]

Thank you for writing a book about chemo brain.  Since my treatment for stage 3 colorectal cancer, my mind has not returned to normal.  I was 33 when diagnosed... active, fertile, mother of three.  A month after starting Xeloda and radiation, complete menopause set in.  Until then I had managed quite well with the stress of my mother's cancer and death, and becoming my disabled father's primary caregiver, as well as my own diagnosis.  

Her Brain After Treatment for Hepatitis C [From D.M.]

I read your book, "Your Brain After Chemo," and I would like to share a few comments from my personal experience.

I have chemo brain from a slightly different direction than most people. In 2001 I was a healthy, active, high-functioning 47-year old businesswoman who underwent PEG-intron combo (Peginterferon alfa-2b) treatment for Hepatitis C. The treatment is monitored by a gastroenterologist for a period of 6 months. I was told I would feel a little tired, and have "flu-like" symptoms. I ended up staying in bed for the full 6 months, unable to drive, work, and barely able to feed myself.

When I inquired about this, my doctor said, "Just stick with the program, that's the most important thing." I was never informed that my adverse effects could or would continue after treatment.

At the end of my 6 months, I embarked on a rigorous program to regain my health and fitness. I exercised as much as I could, swam, saunas, colon cleaning, craniosacral massage; anything to help my body get going again.

In addition, I saw my G.P, gastroenterologist, neurologist, psychologist, physical therapist, and psychiatrist, constantly looking for the answers to why I could not regain my health. There were probably a few more doctors I saw that I can't remember.

My problems included: extreme fatigue so severe that I often could not finish breakfast without needing to go back to bed, inability to read for more than 5 minutes without getting an ice-pick headache immediately, feeling like I have the flu everyday, severe ringing in my ears, mental confusion, cognitive dysfunction, depression, suicidal ideation, joint pain, muscle aches, on and on.

Finally, I saw a hepatologist in San Francisco who had worked in the clinical trials for the drug I had taken, Peg-intron. When we met and I explained my problems, he shrugged and said, "Yes, we know about all those effects and they are probably permanent brain damage."

Stunned, I asked, "What am I supposed to do with the rest of my life? I can't go back to work. I can't even drive."
He looked up from his papers and said, "Get on disability. And for your brain damage, take up basket weaving."

Thus dismissed, I left his office and wept. Finally, I had learned the truth, but the truth was that my life was over as I once knew it.
For the last 9 years, I have tried so many things including many of the medications your book suggests. Sometimes I'm a little better, but then I inevitably crash and have to start the process all over again.

Unfortunately, I have many friends who underwent the same treatment with even more disastrous results. Some are in wheelchairs, care homes, and many have committed suicide. For some reason, I'm still here.

I am glad to find out that there are researchers studying the "continuing adverse effects." Hopefully, the research will be able to refine the drugs so that they do not cause the terrible -- I can't call them side effects -- the truly terrible effects these drugs can cause.

Thank you for your book.

D. M.

Speaking to a Crowd of 300 on National Cancer Survivors Day

by

Idelle Davidson

That's me giving the main address of the evening and the first time I had appeared before such a large group, either with or without my co-author.  What a nice experience.  Those in the audience not only stayed awake during my talk on "chemo brain," but laughed in all the right places! Thanks Paula Bauer and Torrance Memorial Medical Center for inviting me!

From Gudrun Durmon: Every Pink Warrior Needs a "Chemo Sabe"

Hi Idelle,

Of course you don't know me , but I am a member of the very same club we did not want to belong to (I am OK with it now) and I did have a raging case of chemo-brain.
 

It was so bad that I knew if I did not get better I would not want to "survive."  I read your intro pages of your story in your book,  after the title completely grabbed my attention.  I have said more times than I can count that chemo fog must be how a person with Alzheimers feels....that you would use almost the exact words definitely hit home.

New Research from MD Anderson: Delayed Onset of "Chemo Brain" Months After End of Treatment*

By

Idelle Davidson

In some disturbing findings reported in the April 28, 2010 issue of the journal Cancer, patients may not experience "chemo brain" during treatment but rather months later.  According to the authors, "This is very concerning as clinical lore has suggested that treatment-related cognitive dysfunction should dissipate over time."