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*_AlaskaAngel_*
12-20-2004, 12:37 PM
Reported December 20, 2004

Chemobrain

HOUSTON (Ivanhoe Broadcast News) -- Chemotherapy has revolutionized cancer treatment. But with the therapy comes an often overlooked side effect that researchers have dubbed "chemobrain." Here's what is and what doctors are doing to stop it.
J
anis Shea works hard to stay focused. "I'm lost," she says. "I can't say what I want to say right now. My thoughts have just left me."
Chemotherapy helped Janis beat breast cancer, but those treatments left her with memory loss and attention problems. It's a phenomenon doctors call chemobrain.

"Their memory retrieval's very unreliable, so they'll block on words in conversation or forget people's names. It's very aggravating," says Christina Meyers, Ph.D., a neuropsychologist at M. D. Anderson Cancer Center in Houston.

Janis's husband, an oncologist named Renato Lenzi, M.D., says her behavior was unusual. "She started saying things that were really out of character."

Ten years after her treatments, Janis still has trouble paying attention.
Dr. Meyers says, "I think a lot of people have that expectation that when treatment ends, the chemotherapy gets out of their body, and they should pop back to normal, and that is not the case at all."

It's not clear exactly how chemo affects the brain, but Dr. Meyers says relaxation exercises can ease symptoms. Medications like Procrit and Ritalin are also used to help patients. "It helps people focus and concentrate, and most of these patients also experience a lot of fatigue, and it helps with their stamina and fatigue as well," she says.
Janis has her own remedies. "I did a lot of journaling -- an enormous amount of reading," she says. "I read all the time. I think that I'm much, much better. However, back to normal? I don't know. I don't know what this is anymore."

But she says she's still trying to get there.

Dr. Meyers says memory and concentration problems can occur more than a year after stopping chemo treatment. However, she says not all patients on chemotherapy will experience these types of problems. More than half of people on chemotherapy develop significant chemobrain symptoms.

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***END OF ARTICLE***

MY PERSONAL COMMENTS:

In 2002 when chemo that included Adriamycin was recommended for me, I told both my onc and my internist that I was more concerned about the question of what chemo would do to the brain than I was about whether or not it seriously affected the heart. If it is so dangerous for the heart, what would it do to the brain?

I was luckier than many, because I was stage 1 and the question of recurrence of cancer was less likely for me. But both my internist and my onc had no answer to my question and yet encouraged me to do chemo. At the time my onc, a top oncologist in his field, said that in his entire career of 30 years he had only had 5 or 6 seriously impaired patients after they did chemo. (My thought was, well.... how many that were not seriously impaired people did you have over time?)

On my own, because my health insurance would not pay for it, I had a qualified psychiatrist administer some general mental measurement tests to me so that if necessary I would have a baseline for comparison. That cost $250.

I could not afford a comparison after completing chemo and one has not been done so far, but I am having trouble not only with names but also with the kinds of simple task relationship factors that indicate I do have a problem. For example, today I went to put the blender container on the blender base. I actually tried to put it together without screwing on the circular base portion that fits into the blender base. I am very aware of these problems, but because I work at home no one else but my husband sees me and frequently he doesn't see either as he is not always with me.

Although in the past I have done things like renting an automobile and driving in the big city on my own, I am terrified now of doing that because I literally cannot recognize when I am not putting "2 + 2" together in a random situation.

I am only 53 years old and this was not part of my life prior to doing chemo at age 51. I do not believe that this is simply part of "normal aging".
I would never advise anyone to do chemo if they are at an early stage. Everyone I know thinks I have pretty much "recovered" from treatment now that I am 2 years out, even my husband. But these things happen on a daily basis and I know I have not recovered and may get worse.

Personally, I believe part of the problem is due to the lack of adequate oxygenation due to low blood counts. All of my blood counts still are slightly below normal 2 years after treatment.

It is sad that it took having an oncologist whose wife ended up dealing with it, to start looking away from chemotherapy for better ways to treat human beings who are stuck with the misery of cancer.

A.A.

Merridith
12-20-2004, 10:05 PM
Dear AlaskaAngel:

You are not alone in feeling that the price of chemo brain and other assorted side-effects from chemo might have been too high a price to pay. I also had early stage cancer. Mastecomy granted most of my survival percentage factor, but with the addition of chemo, my statistics would improve aprox 7-10%. Sadly, it is impossible to know if you will be one of the few that chemo will actually help.

I agonised for days over whether to take it, and I finally did with the onc's strong encouragement. It was a very borderline decision for me. Chemo brain wasn't considered a major (or likely) side effect, when I questioned my onc about it. And it was the one likely side effect that I would have junked chemo to avoid.

Unfortunately it has been a major side effect for me. I must write on a piece of paper where my car is parked at the mall to ensure that I can locate it again after I park it. I must keep a note pad beside the telephone to surmize conversations to prevent myself from repeating stories to the same friend and keep track of when we are to get together etc or I will forget.

I have forgotten peoples names at the point of introduction, my postal code, and even my phone number. All these events are completely random. Sometimes I perform well. But then later a word evades me and I am forced to substitute and inadequate synynom.

I kick myself constantly. I have lost hotel keys that I am responsible for. While hiking with my 8 year old niece, on the return trip we came to a fork in the trail and I was forced to rely on her to tell me which one we had taken to return to the vehicle. Worst of all, I actually appear to manufacture completely fictional memories that appear quite real to me (such as where I put the hotel keys), but are clearly incorrect because people around me remember a different chain of events. Worse, when I am corrected, the correct memory isn't reserected.

People think that I should "try harder" to remember. Sorry, that is not an option. Believe me, I kick myself savagely whenever I screw up. Additionally I now suffer hotflashes every hour on the hour and have forever lost any chance of children and have joint pain.

Would I take chemo again given the choice. More and more the choice for me would be ... no.

Regards, Merridith

Has anyone ever drawn a relationship between chemo brain and early stage alzheimers?

Lolly
12-20-2004, 10:55 PM
I sympathize with you, and I know it's small consolation to know we're all in the same boat together. For myself, I was Stage III when dx, so choice was not an option. Chemo brain isn't easy to learn to live with, but some of the symptoms do seem to improve over time, probably due more to "relearning" how to retreive information, and learning little tricks to sidestep the disability of memory and cognitive disfunction. I'm intrigued by your idea, Alaska, about the problem may be related to low oxygenation. I think that makes a lot of sense.

Love, Lolly

Peggy
12-21-2004, 07:18 AM
I had one oncologist I went to for a second opinion who said "Some people are concerned about chemobrain - whatever that is. I'm not sure there is such a thing".

In the year since I stopped chemo, I have gotten "lost" twice. I was in the Lowe's garden center (I spend a lot of time in garden centers) and decided it was time to pay for my purchase but couldn't remember how to find the cashier. I had been in this place many, many, many times but all of a sudden I was lost in this store!

About 3 months later I was taking a power walk through my neighborhood. I stopped to retie my shoe and when I stood up, I didn't recognize anything. This was in my own neighborhood where I had lived for almost 15 years!

At first I felt certain this must be a sign of brain mets. But, because it has only happened twice and because the incidents were so far apart, I decided it was chemo brain. I did panic a little at the time these two incidents occured. Now I force myself to stay more aware and pay attention better.

I also find the idea about lack of oxygen interesting.

Peggy in Orlando

*_AlaskaAngel_*
12-21-2004, 12:18 PM
Your example is identical to what happens to me, Peggy.

A few months ago I went into an office that I deal with every day in my work. I know the 6 staff members there extremely well and in particular the nurses there. I walked into the part of the tiny, 6-room office where the nurses are and saw the nurse. I literally could not distinguish which nurse she was when we were face-to-face, and I know them both really well. It was awkward but I covered up fairly well. I could see from her expression that she was puzzled, but she was also very busy so she let it go.

How on earth can an oncologist like the one that saw you not believe this happens to us?

What I am seeing is a slow but definite movement away from chemotherapy. I suspect that the problem we are having has been denied for a long time, like the problem with estrogen replacement therapy was. I think that very quietly there is an effort to limit the use of chemotherapy at least for women with bc.

The thought of our generation of women ending up either dying from bc or becoming mentally incompetent from treatment would be a very big burden on society and our families.

You are not alone. Concentration is one way to deal with it, but for me it still sneaks up on me every single day in my tasks.

I am trying to find ways to improve my blood count as a way of limiting the damage. I exercise some, I try to get some natural sunlight to help the bones recover so that they can make better blood, and I both take in some liver every week to increase my iron level and also take antioxidants to limit the oxidation damage from iron.

Every medical provider I have asked says there is no effective way to improve blood counts in a permanent way.

XXXX OOOO

A.A.

al from canada
12-22-2004, 04:12 PM
I give linda DMAE, a smart drug found naturally in fish. This can be purchased as a supplement at health food stores and I find is very helpful for mental accuity. In the 50's it was used for ADD and later replaced by ritalin. 500 mg 2Xday.
Al

AlaskaAngel
12-22-2004, 09:38 PM
Interestingly, Al, during one of the presentations about chemobrain the doctor who was being interviewed about it said that there is currently research going on using one of the drugs that is now used for ADD as a drug for those with chemobrain.

A.A.

al from canada
12-22-2004, 10:44 PM
Hi A.A.
It's probably Ritalin (methyphenidate) or Provigil, (Mondfinil or in Canada, Alertec). The latter is an interesting drug as it is aso considered a "smart drug". It is somewhere between amphetamine and caffeine without the addictive qualities nor the shakes. It also is not an hunger suppressant. I think that this drug is in a class of New-age stimulants. Besides being prescibed for narcolepsy, doctors are also prescibing it for MS related fatigue. The French Air-force also uses it to combat fatigue. The best part is that it doesn't elevate liver enzimes. (No I don't own shares in it)
Take care,
Al