Sunday, August 15, 2010

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
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 chemotherapy regimen have ranged from little or none, to debilitating.  

As to why patients are not warned of potential memory loss before undergoing chemotherapy, the reasons are also varied... some oncologists believe that advising patients about the possible cognitive side effects might increase their propensity to experience them; others believe that there is no real choice anyway about what the right course to follow would be, so why complicate matters with consideration of these issues; and there are others who still are even skeptical about the existence of the chemo/cognition connection.

It sounds like you are aware of, and doing, a lot of the right things to facilitate your recovery, and we wish you the best.

Dan Silverman


  1. Do memories come and go or they completely disappear when you are suffering from chemo brain?

  2. While we can't say for a particular memory what will happen, it does
    seem to be the case that what is often lost by someone suffering from"chemo brain" is the ability to retrieve the memory, rather than the memory itself. This is encouraging, in that it means that when the condition improves, the ability to retrieve the memories can also be regained, even if they currently seem to have completely disappeared. Of course, this principle applies to memories that were definitely there at one time, such as those that preceded diagnosis. Another aspect of post-chemo brain that can affect memory is that the diminished ability to pay attention and concentrate may limit the
    memories that are laid down to begin with.

  3. My husband is experiencing exacctly what Lorenzo has described. He has Non Hodgkins Lymphoma and finished chemo at the end of Dec. and is now clear for the moment. I raised the issue of memory and confusion 3 times during the 6 months treatment but was told that this was not connected to illness or chemo. It has not improved and now he has seen his GP with regards to it and is being tested for dementia, even though he is only 62 and was known for his forensic analysis skills.
    However, NOW the oncologist having been contacted by GP, has just said that there is a loose connection and is sending him for a brain scan.
    Here is an example of being told of the possibility could have saved both us untold worry and stress.

  4. Thanks for your note. I hear similar stories from many NHL patients (and from people with lots of different types of cancers, for that matter). You may want to ask your oncologist about referring your husband to a neuropsychologist who is familiar with "chemo brain." A neuropsychologist can evaluate your husband's cognitive issues in a noninvasive way and provide valuable feedback. Good luck.

  5. Thank you for sharing your experience. I am so glad to have found this site as it helps to know that I am not alone. I had Hodgkins in 2008 aged 38 and underwent ABVD and radiotherapy in the mediastinal area. I thought my fogginess/forgetfulness/lack of focus was due to getting older and/or early stages of menopause. I find that I cannot remember names/struggle with word retrieval/cannot focus/seem to go off in my own world at times. I used to be so 'on the ball' prior to the cancer. I feel that the situation has been getting worse and I have now contacted my oncologist.