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Research Webinar: Cognitive and Emotional Effects of Breast Cancer Study

In case you missed the July Army of Women Research Results Webinar, the video broadcast is now available!

We are excited to provide an opportunity to our Army of Women members to virtually meet Dr. Shelli Kesler and her team, who conducted the “Cognitive and Emotional Effects of Breast Cancer Study”. The Army of Women played a vital role in the success of the study; many of you participated in this study and helped close recruitment within 18 days! The focus of the study was to understand how breast cancer and its treatments cause problems related to attention, memory, depression, and anxiety. Dr. Kesler and her team want to learn more about these problems as well as how to prevent and treat them.

This is your opportunity to meet the researchers and get an update about the study. In the webinar, Dr. Kesler discusses the study and its results as well as answer your questions.

Carla said...

I was treated for Hodgkins in 1972 (age 25) with XRT and chemo(2 cycles CHOP). Then breast cancer in 2007 with chemo (2 cycles AC - my bone marrow couldn’t handle more than that; then 12 weeks of Taxol). Took methotrexate for 2-3 yrs for RA. I have problems with remembering simple, simple words and how to spell them. It scares me. I’m an avid reader and retired oncology research nurse plus I paint. I work hard at being mentally active but when I have those memory lapses I am crushed. Your study was a light in a sometimes dark tunnell. Thanks so much. Carla Mazzone

Catherine said...

I left a reply on you tube but want to thank AOW for supporting this study. I had a BMT and 6 months of chemotherapy and have found the following long term effects:

Catherine said...

sorry pushed the wrong button. The long term effects:
1. Loss of word retrieval
2. Lack of sleep
3. Loss of hearing

Patricia said...

If possible, please email me the discount code Dr. Kesler has provided for the Lumosity mental exercises website. Thanks a lot. Sincerely, Pat Turton, jpturton@prodigy.net

Sydney said...

Thank you!! This certainly explains many questions I have had (and my family too)~

Patricia said...

Please send the Lumenosity discount code to rosemnr@molalla.net Thanks for an interesting presentation.

Kathy said...

Thank-you! I had heard of Chemo-brain during a Suvivorship Seminar, but thought it just an excuse for what I thought was early senility (at the ripe age of 54). It’s nice to know what is happening, and that there is something I can do.

Debra said...

I thoroughly enjoyed the seminar and love the Army of Women. I participate in all studies for which I am eligible and even flew across the country for one.

Admittedly the seminar was a little discouraging - confirming my fears that two series of chemo for recurrent breast cancer had impacted my memory and ability to concentrate and multitask. I was very pleased to learn, however, that there are ways to address some of these problems and I plan to do so. I would appreciate receiving the discount code for Lumenosity. Please send to dwebbva@gmail.com. Thank you.

Kathy said...

Please send the discount code for Lumenosity to Ktolbert@angelofthewinds.com, Thank-you so much for the webinar and all the helpful information.

Christine said...

Please send the discount code for Lumenosity to christinejmm@gmail.com, Thank you for the Webinar.

Donna Lee said...

I definitely had chemo-brain while going through my chemo therapy treatments. I sat at my desk at work one morning for at least 15 min. before I recalled what in the hell I was suppose to do. That isn’t the only incident during the treatments but that sticks out the most. Today, after 7 yrs. I still have issues with concentration and memory. I know my life before is much different that prior to it all.

Ann said...

I participated in the study,but didn’t hear anything about “Lumenosity”. What is it, and what is the code?

It’s kind of sad, but somewhat comforting in a way, to hear of other women who, even after 5+ years out of treatment (except for Tamoxifen), are still having trouble with word recall and memory issues - at least it’s not dementia! Life really is quite different now - mostly good.

LaVone said...

Thank you for this interesting research. It explained a lot of the cognitive issues that I had and still have 6 years later. I’m interested in getting the discount code for Lumosity. I also have Very advanced Neuropathy from the Drug Taxol, affecting my feet, legs and hands. It seems like my word recall is getting worse. Please send code to vonie@mncable.net. Thank you!!

Mindy said...

Please send the discount code for Lumenosity to mindyfm@gmail.com. Thanks.

karen said...

Please send the discount code for Lumenosity to kcgryhound@msn.com. Thank you!

Linda said...

Loved the seminar, it was fascinating, and nice to know I wasn’t crazy, just chemo effected.

Also, I’ve checked out the Luminosity website and would love the discount code so that I could get signed up and started.

Thanks!

Jean said...

Please send the discount code to jasq@aol.com. Thank you!

Arlene said...

Please send the discount code to avo@shaw.ca
Thanks!

Janine said...

Thank you so much for this study! More are needed, but it is a great start!

I am confused about a few things: At one place, Dr. Kesler says they cannot say it was chemo that caused the cognitive problems, but later said all kinds of chemos cause brain damage. Isn’t it the brain damage that causes the cognitive problems? Therefore, aren’t they due to chemo?

Also, she was talking about some in the study starting exercises right away, and others waiting, but later said the study participants were on average 5 years post-treatment. So none were doing the exercises right away?

I am sorry, I am just confused. Which is not a hard state for me to get into these days. I had to listen to the presentation a few times, due to attention difficulties, as well, so maybe it is me that missed something.

It seems to me that if chemo is causing brain damage, insurance should pay for rehabilitation. But I guess that is yet another battle we survivors will have to fight.

Anyway, if I could get some clear answers to those questions, I would appreciate them. janinecmiller@yahoo.com

Also, is there a way to get a transcript of this presentation?

Thanks! God bless.

Barbara said...

Please send me the discount code for Lumosity.
Interesting topic.

Shelli said...

In response to Janine’s questions….

What I meant is that we can’t say ALL cognitive problems are due to chemo. We believe that chemo is a major factor but the cancer itself, hormone blockade and radiation seem to play a role as well.

All participants in the cognitive training program were on average 5 years off therapy at the time of enrollment in the study. When they enrolled, they were randomly selected to either start the cognitive training right away or to start it 12 weeks later.

Many insurances do in fact pay for cognitive rehab due to “chemobrain”. However, some insurance companies do not pay for cognitive rehab no matter what the diagnosis is.

Shelli Kesler, PhD

Shelli said...

Janine also asked: “I am wondering if the improvements that survivors showed from the mental exercises brought them back to the kind of level the women who never had cancer were at. I hope that question makes sense. Just that I can’t remember if she defined the improvement as back to normal functioning for the age of the women.”

Yes, they did!

Shelli Kesler

Carolyn said...

Thanks so much for sharing the results of this study. It’s heartening indeed to know that cognitive function can be recaptured. Please send a discount code for Lumosity to ckkasten@gmail.com

Rhonda Lea Kirk said...

Because of this study, I signed up for a Lumosity account (2-year subscription). I currently have a support query in to the help desk because I’m unable to access the specific program for chemo brain. It’s listed on the site, but each time I click the link, it kicks me back to my own account.

I’m posting now because it looks as if a lot of women are planning to sign up, and I would hate to see them disappointed if this is not just a glitch with my browser. (I’ve tried it with 3 browsers just to be sure, so it isn’t likely.) I will leave another comment when I hear from Lumosity support.

(I should add that Lumosity, as is, is interesting and fun, so I don’t feel this is a total loss. I would just like to be able to use a program that is targeted to my actual problem.)

arlyn said...

I would also appreciate the discount code for Lumosity. Thank you! madjjk@gmail.com.

Anne said...

Please e-mail discount code for Lumosity to hinsonab@aol.com.

What an interesting and in it’s own way, comforting study to be aware of. The mental effects of diagnosis, stress, surgery and treatment left me feeling very dull. I told me sister I felt as though I.Q. points were falling out of my ears. After treatment and finishing five years of Arimidex, I am feeling more like what passes for normal. After hearing this webinar, I immediately called a cousin who recently finished tretment and we agreed that the study was encouraging to patients. We now understand what has happened to us and we know there is hope for mental healing.

Is this study available in written form or is there a transcript of the webinar?

Thanks for making this information available to us - the affected.

Maria said...

What I really didn’t understand is the difference between the “Active” group and the “Waitlisted” group. If the study participants were an average of 5 years out from treatment, why would a wait of 12 weeks affect the outcome? It appears to indicate that waiting to begin mental exercises adversely affects the success of the exercises but I’m not clear on how long is too long to wait? I’m just not clear on the point of the slides. Why does 12 weeks matter so significantly?

I’m just three weeks out of chemo and my main issue is word recall. If I begin mental exercises now do you believe I could recover all my former skills? I’m 47 and still need those skills to be sharp for my work.

Also, just to clarify, did you say tamoxifen may adversely affect cognitive skills?

Thanks for posting this information for us.

Kristine said...

Newly diagnosed and facing chemo and radiation.the tumor was hormone reactive negative. I am still healing from surgery and I would love to receive the discount code for Luminosity which I already have the free app for and love the challenge. All this is so scary for me. It is god to know there is an ‘Army’ of you out there.

Kristine said...

Oops forgot to leave my email kriss6@me.com

Sue said...

So nice to see all of this in writing! I have not figured out how to print this out. If someone could send me the Power Point presentation and the discount code for Luminosity, I would really appreciate it. This article prompted me to make an appt with a neuropsychologist for testing!
My email address is sbadas@hotmail.com.

Thanks, Sue

Barbara said...

Thank you for doing the study! My own experience confirms the findings…keep active and engaged. Please forward the discount code to me at by3927@gmail.com…I’m going to dust off my Brain Age too! Dr. Kesler, your presentation was very clear for non-medical people. Much appreciated.
Barbara

Barbara said...

Well, I just re-read my invitation email, and there is the discount code right there:) Guess I better sign up quickly!
Barbara

Shelli said...

Here is an answer to a question by Marie. She asked:

“What I really didn’t understand is the difference between the “Active” group and the “Waitlisted” group. If the study participants were an average of 5 years out from treatment, why would a wait of 12 weeks affect the outcome? It appears to indicate that waiting to begin mental exercises adversely affects the success of the exercises but I’m not clear on how long is too long to wait? I’m just not clear on the point of the slides. Why does 12 weeks matter so significantly?

I’m just three weeks out of chemo and my main issue is word recall. If I begin mental exercises now do you believe I could recover all my former skills? I’m 47 and still need those skills to be sharp for my work.

Also, just to clarify, did you say tamoxifen may adversely affect cognitive skills?

Thanks for posting this information for us.”

———

The way these randomized trials work is that you compare the change in cognitive test scores across the 12 week period between the groups. You expect that the group doing the cognitive training during the period of interest (active group) will do better than the group who is not doing the training during that same time period (waitlist). The waitlist group will then show improvement in their cognitive skills after they do the cognitive training just the same as the active group did. The waiting has no effect. What you are really seeing here are the results of a group who did the cognitive training versus a group who did not do the cognitive training. In many studies, the control group does not receive the intervention at all. We wanted everyone to have the chance to try it so our control group was a “wait list” control.

Yes, tamoxifen has been associated with some cognitive changes because it blocks estrogen which is important for brain function. Many patients experience improvement in their cognition after tamoxifen treatment is over.

I cannot make a comment about whether or not you will recover your cognitive skills with cognitive training. I can say that it will increase the probability that you will.

Rhonda Lea Kirk said...

As a follow-up to my earlier comment, everyone should be aware that Lumosity is changing and access to the Cancer Recovery Course will not be available unless you request that access from customer service. This is what customer service told me (excerpt from thread at getsatisfaction.com/lumosity):

“We feel this is a better experience than the cancer recovery course in the old Lumosity because it includes more games and better performance details. However, if you want to enroll in the old Cancer Recovery course, we can make your account transitionable for a short time so you can use the old Lumosity. However the old Lumosity will only be available for a short period of time as we transition all accounts to the new version.”

Act with Love Blog | Might “Chemo Brain” Start Before Chemo? said...

[...] I’ve begun doing the Lumosity web-based brain training program. An Army of Women study used it to study the type of effects breast cancer and its treatments can have on problems related [...]

Linda said...

Dr. Shelli Kesler from Stanford recently published a book “Improving Cognitive Function After Cancer” to help all of us with chemo brain. I was struggling a lot with chemo brain and then I met Dr. Kesler a few years ago. Her method has been very helpful for me and I highly recommend getting this book and incorporating her strategies so you too can make improvements. The book is available on Amazon.

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