New Hutchinson Center study helps lift the fog on chemobrain
By Ignacio Lobos, Hutchinson Center External Communications Editor
Last summer, Colleen Steelquist, a science editor at the Hutchinson Center, wrote about many cancer survivors who felt as if their brains were trapped in a fog after treatment.
This cognitive impairment—characterized by loss of memory and stumbling on words, among other symptoms—has come to be known as “chemobrain” or “chemofog.”
But because there has been little empirical evidence to back up patients’ stories, chemobrain has been met with skepticism by the medical community. And it certainly has been a painful puzzle for many patients who couldn’t quite put a name to what they were feeling.
But this week, a new Hutchinson Center study confirms what patients have been reporting all along: among people who undergo a bone marrow or blood stem cell transplant to treat blood cancers, many go on to experience a decline in mental and fine motor skills.
But there’s also good news in the study: chemobrain’s symptoms are largely temporary for most patients, and they are likely to return to normal motor and memory functions within five years.
The Center’s Dr. Karen Syrjala, who led the study, has been trying to confirm whether the powerful chemotherapy agents involved in transplantation also had an impact on motor and memory skills.
Dr. Karen Syrjala
“We were thrilled to see that people recovered substantially, but we also were surprised that so many people did continue to have measurable deficits in some areas even after five years,” she said.
This is the first study of its type to follow patients to ascertain whether they recover from cognitive losses, and it builds on earlier work by Syrjala and colleagues.
Syrjala said she was surprised to also discover that for some patients, cognitive problems don’t go away as quickly. She said it’s not known why these conditions persist in some patients, and more research is needed.
One potential culprit: some cancers, especially leukemia and lymphoma, are “whole-body” cancers because blood circulates throughout the body. These diseases may cause their own neurocognitive impacts, in addition to what chemotherapy may contribute.
“The major clinical implication of this research is to assure (transplant) recipients and their health care providers that further progress will occur in their information-processing capacity between one and five years after treatment,” the study said.
“However, it is equally important to validate for long-term survivors that not all (transplant) recipients fully recover neurocognitive function by five years.”
For these patients, the study concluded, there’s a need for continued rehabilitation to deal with any residual deficits of chemobrain.
Although I am still compromised with fatigue that feels like it initiates from the simple processing of stimulus of “being alive” (sights, sounds, mental work, etc), after 7 years I was referred for neurofeedback as a last resort to try and find a solution. The specialist found that I had what looked like a severe case of ADD/ADHD and treated me as such. The fatigue issues continue with my brain use, but the fog part was permanently gone after only 8 treatments. The specialist, upon reviewing my treatment records, hypothesized that the issue was more likely because of the various antidepressants automatically given during treatment (I have never been prone to depression and was not asked or told about this standard protocol) vs the other drugs, such as chemo. I was so thankful for the referral, as I was close to needing long-term care due to the fog aspect worsening my fatigue even more.
Thank you for mentioning those of us who are still having problems after five years. Often I feel we are left behind because most studies only go to five years. I know the study did not extend past five years, but you did acknowledge us, and for that I am thankful. I am eight years post transplant. One question, what type of rehab should we be doing?
Thank you,
Patty Wielgos
Chicago, IL
Thanks for your query. Dr. Karen Syrjala, director of the Hutchinson Center’s Biobehavioral Sciences Program and co-director of the Survivorship Program, said transplant survivors often ask what they can do to improve memory, concentration and other cognitive difficulties. Here are her suggestions:
There are a number of strategies that make a difference in daily living. Most of these are about helping your memory and concentration just like we do as we adjust to aging. A few examples are:
1. Use one notebook or smart phone to keep track of appointments, to-do lists or anything else you want to remember. Then you’ll always know where to look when you need to know what you want to remember.
2. Associate one thing you want to remember with something you never forget or are sure to do. If you always take your car keys with you, put the other things you want to take with you with your car keys.
3. Reduce distractions when you want to remember things. Tell yourself, “Stop, pay attention.” Repeat what you want to remember, even say it out loud.
4. Make sure you get enough sleep.
5. Get daily exercise. New laboratory research says cognitive function is improved with exercise. It may help brain cells to regenerate and reduce stress and inflammation, all of which contribute to brains not functioning at their best.
Building fine motor skills has not been tested in cancer survivors, so we aren’t sure what works. But it may be helpful to practice fine motor activities regularly. Practice, but remember to take breaks because overtiring your hand-eye-mind coordination skills will not help.
If you feel like you need more help with your thinking, ask your doctor for a referral for neuropsychology testing and/or a rehab program designed for cancer survivors.
I had a Stem Cell Transp. @ NHL, in 1997 and I still have significant chemo brain issues.
Cannot keep jobs.
Just been qual. for SSDI. But I wish I was bk to normal.
What type of rehabilitation is needed if the effects of chemo brain are long lasting?