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chemo brain

CharN's picture
CharN
Posts: 6
Joined: Oct 2005

Anyone out there suffering from chemo brain? I'm one year post treatment and just had a clean PET scan in Sept.

But what about my short-term memory, somtimes stuttering, forgetting words in mid-sentence, tiredness, sometimes dizziness, headaches, joint and muscle aches, weight gain, depression, zero sex drive, mood swings...

Is anyone out there having any of this? Don't get me wrong, I'm HAPPY to have these problems instead of my cancer...at least I'm here to tell about it. I'm back to work [desk job mostly] and I STILL suffer from serious fatigue.

I have heard it called chemo brain, some may say I'm just whining. What I'd like to know is what long term effects people have had after chemo, and what can be done to control them.

God IS still on the throne, and I wish His best to all of you.

Char
NHL dx June 2004
CHOPx6 w/rituxan
Radx18
Setbacks: PE, neutropenia
Clean PET in Sept

SwimCoop's picture
SwimCoop
Posts: 17
Joined: Apr 2003

you'll have a hard time finding someone you didn't have that problem for atleast some period of time after chemo. Its totally normal but people who haven't gone through the treatments don't see it. I had all those things, well except for the change in sex drive (because of my age). FOr some people it lasts a couple months others it lasts a couple years. In some cases it lasts many years but don't worry it gets better.

gdpawel's picture
gdpawel
Posts: 549
Joined: May 2001

Chemotherapy Impacts Cognitive Functioning Up to Ten Years After Treatment

Standard-dose chemotherapy can negatively impact the cognitive functioning of cancer survivors up to 10 years after treatment, a new study from the Dartmouth-Hitchcock Medical Center finds.

The study -- the first of its kind to compare the neuropsychological effects of chemotherapy and radiation therapy on long-term cancer survivors -- determined that people treated with chemotherapy scored significantly lower on tests for memory, concentration, and psychomotor functioning (ability to integrate different types of information) than patients who received only radiation therapy or surgery. Previous studies have suggested that cancer survivors treated with chemotherapy experience cognitive deficits in the short-term after treatment and up to two years following treatment.

"We wanted to study long-term cancer survivors to see if the secondary effects of chemotherapy on cognitive functioning could be detected many years after treatment and our results suggest that they can," said Tim A. Ahles, Ph.D., lead study author, and Professor of Psychiatry and Program Director of the Center for Psycho-Oncology Research at the Dartmouth-Hitchcock Medical Center. "The cognitive effects of chemotherapy on patients were relatively subtle and most of the scores fell within the normal range of performance. However, patients tell their physicians that these changes are very recognizable."

The 128-person study compared breast cancer and lymphoma survivors treated with chemotherapy (35 breast cancer patients, 36 lymphoma patients) with people who received only radiation therapy or surgery (35 breast cancer patients, 22 lymphoma patients). Study participants were at least five years postdiagnosis, not presently receiving cancer treatment, and disease-free.

Patients were given a standard neuropsychological assessment in nine areas including verbal ability, visual and verbal memory, and motor functioning. Participants also completed questionnaires on anxiety, fatigue, depression, and memory functions.

Results reveal that 85 percent of study participants received only one type of chemotherapy regimen. Survivors who were treated with chemotherapy scored significantly lower on the neuropsychological assessment compared to those treated with only radiation therapy or surgery across multiple domains, particularly in the areas of verbal memory and psychomotor functioning. However, these results, as well as those of other researchers, suggest that only a subgroup of patients experience persistent cognitive deficits post-treatment.

Reports of depression, anxiety, and fatigue, all of which can affect cognitive functioning, did not differ between the groups. This suggests that the differences in performance on the cognitive tests were due to the chemotherapy itself, not to greater levels of depression, anxiety, and fatigue in patients who received chemotherapy.

According to Dr. Ahles, more studies need to be conducted to determine exactly what might be affecting cognitive functioning so researchers can identify types of treatments or cognitive rehabilitation that might help cancer survivors.

Journal of Clinical Oncology, January 15, 2002

nubiancooki's picture
nubiancooki
Posts: 3
Joined: Jul 2004

I definitely have chemo brain. Most frustrating thing about it is when people look at you like you're using the "imaginary" chemo brain excuse. I WISH it was imaginary, as if anyone likes to forget what their talking about, stutter and all that stuff. It sucks!

CharN's picture
CharN
Posts: 6
Joined: Oct 2005

I am SO with you. Even my husband doesn't believe the chemo brain excuse most of the time!

I got a great t-shirt. It says: "I have chemo brain, what's your excuse?"
Here's where I got it: http://www.choosehope.com
That's a great website with a discussion group also.
Take care & best wishes!

labrat4drs
Posts: 2
Joined: Jan 2006

i just tell people it was because of to many bad drugs in my life.. i have had alot of chemo. more than i ever should have. 5 cycles of cisplatin, etoposide,and bleomicyn in 1991. and 4 more cycles in 1999. had not only it messes with my mind still to this date. it's also taking its toll on my joints and mussles. i now have to have shoulder replacement and disks throughout my spine now is in need of being replaced. after the first time going through chemo i felt invincable. second round of chemo it's a whole new thing of experience. but one thing for sure. i still have my possitive attitude, and possitive outlook in life. those two things after-effects of chemo will not interfere nor take away from me. be strong everyone, john.<--- 2 time cancer survivor

sandymoore's picture
sandymoore
Posts: 3
Joined: Mar 2005

I am almost 1 year after treatment and I so have chemo-brain. The memory sucks, and the forgetting words mid-sentence is just crazy. The joint and muscle pain has been gone for about 7 months and the weight gain has been horrible. The other symptoms such as dizziness, mood swings and depression are not a problem. However I do have a lot of problems with flash backs. I can be driving down the road or watching TV and next thing it's like someone pushes the rewind button and things come flooding back to me which makes me very emoitional. My Mom thinks I suffer from post traumatic stress syndrom. Whatever like you I am just happy to be alive. Happy Holidays to all.

Twincol
Posts: 1
Joined: Dec 2005

Char, I too am having significant cognitive difficulties approx 18 months following the end of dose dense chemotherapy for stage 2 breast CA.

In my very recent research I located what appears to be the latest news on the chemo brain front. GDWPL (an earlier reply) posted a good study of the then-current research results on chemo brain at the time. Research has been ongoing for several years in addition, attempting to identify a drug which would/might help in treating the symptoms of chemo brain.

It was suspected and the research is confirming that one of the Ritalin conjugates was helpful in reducing the symptoms (sx), which makes sense if you think about the sx. They are VERY MUCH like those of Attention Deficit Disorder (ADD) and the treatment for ADD is often the same . . . a psychostimulant.

You will find a copy of the presentation by "Stewart Fleishman, MD, director of cancer supportive services, Continuum Cancer Centers of New York, Beth Israel Medical Center, New York, New York, [who] presented the results of a small study of women with breast cancer who were treated with d-MPH, at the 28th Annual San Antonio Breast Cancer Symposium (SABCS)" at

http://www.docguide.com/news/content.nsf/news/8525697700573E18852570D600479931

The conference was only held this month and the article on DocGuide was only posted on 12/13/05. So it is really the latest and greatest.

This is not, BTW, the only study of this particulasr drug for this particular chemotherapy fallout, but one of many over the past 2 years or so I've run across. So it is gaining credibility. The oncology sites are posting it, as are the sites for neurology and psychiatry specialists. Do a Google search for "chemo brain treatment" and see what you come up with. You'll be amazed at the research outcomes coming down the road right NOW! Just in time to help you and me.

I also have only recently had a negative whole body PET scan. I was referred to a neurologist and she started me on Adderall and handed me a referral to a psychiatrist for follow-up, as they are the medical specialists most familiar with the use of psychostimulants for such neurological sx. My cognitive slippage began to subside almost at once, BTW. Boy . . . WAS I THRILLED. I've got a ways to go, yet, but at least there seems to be an opening at the end of the tunnel of chemo brain.

So I say go visit your oncologist and talk to him/her about the research. It is still an off-label use of the drug when utilized for chemo brain therapy.

Kind wishes and good luck!

A Happy New Year to all!!!

Linda aka Twincol

fibromyalgia1
Posts: 1
Joined: Jan 2006

I haven't gone through chemo but my best friend finished 5 months ago. I found this site trying to help her out. What hit me most is how exactly so many symptoms match Fibromyalgia that I have! FM is arthritis of the soft tissues- muscles and tendons. It can be caused by a shock to the body such as menopause. If that can do it- imagine what chemo does! Symptoms are muscle/joint pain. memory loss, depression (because of the constant pain) Sound familiar? The point is this- I found GREAT relief by taking 1000 units of Vit D daily, (cut my pain by 1/3)Glucosamine sulphate 3x a day and the biggest wonder is CELADRIN, an omega 3 oil product, simply vegetable oils, which cut my pain another 1/3 in 3 days. My cousin who was on Celebrex for years tried it and is no longer taking Celebrex. Magnesium is important too in this mix. A hot bath before bed eliminates leg pains almost entirely.Perhaps researching Arthritis will help you all a lot. I really think many of you now have that as well.
If my suggestions help even one person it will have been well worth my time to sign up to do this! Good luck all.

1984to1994
Posts: 14
Joined: Oct 2004

thankyou for putting a name to what ive been feeling for many years. those are all things that ive been dealing with for many years.

ken

well's picture
well
Posts: 26
Joined: Apr 2005

For those doubting the validity of chemobrain, plug the term into most any search engine and you'll find hits pointing to numerous studies (including in my home town.) Apparently even oncologists once wrote this off as fictitious, but it is definitely real.

I do have a question however.

When I had chemo-induced neuropathy, the symptoms got progressively worse as treatments continued. My medical oncologist told me that there would be a threshold point that I may cross where those symptoms become permanent, and not diminish after treatment ends. (Apparently I walked right up to the edge of that cliff, but did not fall off, since my neuropathy did indeed taper off after treatment ended. Phew.)

What about chemobrain? Has anyone heard of a threshold of permanence, such as with neuropathy? Is there a point where "one more treatment" could be the tipping point?

Is there a guarantee that after 10 years it will be gone? The chemobrain I mean, not my brain. :-)

(I know, this is medicine, there are no guarantees; I was speaking figuratively.)

Has anyone here seen any studies on this angle yet?

glynndaj
Posts: 2
Joined: Jul 2005

I had to drop an algebra course at OSU last semester because I could't remember from problem #1 to # 2 even what the first step was in figuring it out ! Two weeks ago I got a letter from the school telling me I basically lost my financial awards...which is a scholarship I earned on my own merits and not just by begging! The kicker is that this class did not apply to
my GPA but an F would have been on mytranscript.
I am trying to get letters from my neurologist, LPC , etc along with reference material from the
internet to appeal what I feel is an injustice.
Thanks for allowing me to rant.
Best of luck to us all.
PS I am two years out from brain surgery to remove a tumor that was GBM. I am very blessed to be alive and went back to school after 35 years so the scholarship is needed. ( and I am well ! Thank you !!)
Glynnda

manna1qd's picture
manna1qd
Posts: 48
Joined: Dec 2007

I don't get why it's so hard to understand that there is such a thing as chemo brain! The drugs that go through our system are killin' those cancer buggers. It changes our GI system etc. Why wouldn't it effect our brain cells too? My mother doesn't believe there is such a thing and when she blew me off, I wanted to pop her. Never talk to her about much of this stuff because of comments like that. I am a nurse and I can tell you I would be pretty nervous to work in an ICU again. I took a less critical job and spent a good year learning how to do it, sometimes, I couldn't think straight. I wasn't dangerous, but I sure wasn't fast. Once I go the routine and did things several times over, I was good at it. I have totally revamped the way I work at home and on the job now. Many sticky pads, a calendar, my phone alarm etc. If it's important, I need to write it down or set an alarm to remember. I even set the timer if I have something on the stove. Otherwise, I don't remember 'til I smell it! I also went through menopause five months after that: a double whammy! Good news is, I can't hold a grudge if I want to because I don't remember being hurt or slighted for long :)

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