Cognitive - Is anyone experiencing this

[MJo]

I finished chemo in May 2006 and Herceptin in November 2006, so I'm two years past chemo and 1 1/2 years past Herceptin. I write for a living -- business writing, grant proposals, reports, etc. I don't write as fast or think as fast as I used to. I don't focus/concentrate as well either. I used to be a "turn-around" writer, able to get a document out fast. That's very hard for me today. I suspect it's a side effect of chemo; however, I've also changed my attitude about work in general. Life is too important to stress myself. Has anyone experienced this? I am going to discuss it with my oncologist. I actually wonder if I should try Ritalin. I am not performing on the job the way I used to. My boss is supportive, but I m worried. Wondering if i should switch to something that doesn't require writing. I'm only 57 and used to love my work enough that I never wanted to retire. I feel differently now and would stop if I could (but I can't). Don't know if I have cognitive damage or if it's my new philosophy or both.

[Joe]

There is currently research on cognitive failure (Chemobrain)

http://www.medscape.com/viewarticle/557676

Regards
Joe

[Yorkiegirl]

MJo, I know I as well have problems with this. I have used sticky notes but now I find I have to use them almost daily to remember things, because if I don't write it down, I won't remember.

I also find that things I used to do, I now find myself thinking how did I do that task before. I forget things very quickly.

[dlaxague]

MJo,

There has definitely been a change for me also. Friends try to tell me that it's not the breast cancer treatment, it's the aging, as they claim that they all are having similar issues (we are mostly in our 50's).

As far as cause, I suspect the AI (arimidex) that I took for two years. I think that it may be as big or bigger a culprit than the chemo. It bothers me that those researchers now (finally) paying attention to chemobrain do not seem to be taking AI use into consideration as a confounder. And also that very few of the AI studies are assessing for cognitive changes.

What I notice is not that I think more slowly, nor that I have a problem with learning (which is odd because wouldn't you think that would correlate with short term memory loss?), nor that my logic/thinking functions are worse in any way. As far as how "smart" I am (definitely a debatable topic), I don't perceive a change.

The change as I perceive it has been mostly to short term memory and specifically it impacts my ability to multi-task. It amazes me that I can do such stupid things sometimes, and yet still I seem to function okay at my job, which can be an intense job (labor and delivery RN). I don't know if it's that I've been doing this work for so long that there's some autopilot function that helps me compensate? Or maybe the urgency and importance of my function at work helps me focus somehow? And then there's the physical stamina ... another issue.

I'm 7 years out from diagnosis. It was not until this year that I gave up trying to appear normal. I would hem and haw while waiting/praying for the memory to surface rather than say "NO, I have no memory/clue about that". It has been somewhat of a relief to decide to be open about the issue. If I don't remember or if I forgot to do something, I now say so. I don't apologize for my malfunction although of course if it's caused a problem I apologize for that. I just state the facts. "I forgot". I still hate it that I do forget, but it feels better not to be ashamed about it.

That was a lot of rambling to say not much except I hear you and I send my sympathy/empathy.

Love,
Debbie Laxague

[jenniferz]

That's interesting. I am on an AI only....no chemo, no Herceptin. I have noticed that I don't focus, and my memory sort of "shorts out" sometimes. I, too, have been told it's my age. Maybe my age is contributing SOME, but I don't think all.

Thanks, Femara!

Jennifer

[PinkGirl]

I have this problem and I attribute it to aging
and very low estrogen.

[Unregistered]

I am 2 years past chemo. I work at a University and a large part of my work is writing. Before diagnosis, like you I never wanted to retire...then I experienced exactly what you have...had the same thoughts, probably from chemo etc. Talking to my regular doctor, he suggested I might have depression...I started on a low dose antidepressant and it was a miracle. I could think, I could concentrate, I could work! I didn't feel depressed and I would have never thought that was the problem...but it worked for me.

Peggy

[juanita]

I use sticky notes and then forget the sticky notes! And spelling, I can't believe some of the words I cannot spell. It's been almost 2 years since i finished herceptin.

[Roz]

I agree. I think maybe we suffer from a sort of Post Traumatic Stress Syndrome. As someone who has experienced several recurrences I find it gets worsw. At present, I am trying to deal with Social Security and need to be on the ball about what I have earnt and when. Very difficult when you have chemo brain.

[Joan M]

Hi Mary Jo,

I forget a lot too, but I think it's age related. It doesn't seem to be so bad that I think it's damage from chemo.

I always have a lot of post-it notes.

Sometimes I think that having a lot on our plates causes stress which can interfere with our concentration and promote forgetfulness.

Joan

[MJo]

THank you all. I never thought about the Arimidex, even though I take the little pill every night. Especially since Jennifer is noticing these symtoms on AI only. Interesting comment about the antidepressant, because I had to cut my dose down -- w/ doctor's approval. It made me sleepy, especially when I lost a lot of the treatment weight. I feel comforted by these comments and will go easier on myself. Regards to all

[Becky]

I have always thought the "finding the right word" syndrome was low estrogen. Even the hormone negative women get chemopause and us hormone positive women might get it worse because of AIs. I knew it was that as I am well done with Herceptin but sometimes forget how to spell the word "was" (this happened recently). But, overall, my memory is good. My motivation for work is good. Perhaps the work I do is becoming less than inspiring but...

[Bill]

Hello Ladies, I'm sorry to chime in here, but I had to. For what it's worth, I've never had chemo., and I've always been complimented on my excellent memory. I don't have a photographic memory, about 90%, and throughout my life, was always the source for spelling and definitions of words, but within the last six months, I find myself hesitating, sometimes not able to find the right word I want to say, and sometimes the person I'm speaking with will provide the word, and I'll say, "yeah, that's it" and it will be some really common word. I guess what I'm saying is that "our" memory and recall problems may be fundamentally related to stress. Chemotherapy causes stress, and I gotta feeling I've always had low estrogen. Just thought I'd put in my two cents worth.

[Mary Jo]

Time for my 2 cents worth.....................although I don't seem to have any real memory problems (however me and post it notes are real close friends http://www.her2support.org/vbulletin/images/icons/icon7.gif) my attitude toward's work and it's meaning to me have changed.

I always loved my job and still do HOWEVER I've found since breast cancer entered my life I am way busier with other things and sometimes work seems to "get in the way" of what I'd like to be doing. I think it's about finding what's really important in life. You agree?http://www.her2support.org/vbulletin/images/icons/icon7.gif

That being said, I will say, my kitchen at work has become somewhat of a "conference" room and different staff members will come in all the time to talk - to ask me to pray - to ask about someone they know who was dx with breast cancer and many other things. So, it feels like my purpose somewhat also.

That's my 2 cents for what it's worth..........probably only like 2 cents.http://www.her2support.org/vbulletin/images/icons/icon7.gif

Love you guys,

Mary Jo

[MJo]

THanks MareJo. I was telling my co-worker that all I want to do is run through a field of flowers. That's what I want for my life. That is my ambition since breast cancer. I am no longer afraid of the word "unproductive." I want to watch seeds pop through the garden soil.

I am writing this on my lunch hour.

[StephN]

Good topic and I know it has been discussed earlier in these pages.

Have any of you tried any of the "memory enhancement" supplements?
My cancer is hormone neg and I was already post meno at dx, and seemed to be coping ok with memory till my diagnosis.

After having TWO long rounds of hard chemo in successive years, I really noticed my ability to carry on with things drop after the second go round. The "Zombie syndrome" was more apparent and a lot less got done.
I did get a short course of Ritalin from my med onc during my radiation as my ability to focus and finish a task was very scattered then.

After all the drugs for mets I began taking Lions Mane Mushroom capsules and did notice an improvement.
Then I found another one called "Neurozyme" by New Chapter. For "Supercritical Mental Clarity." It does have Ginko along with many other good things.
One thing I like about it is that it "reduces cortisol," a stress hormone that makes us hold the spare tire fat.

Last year I had to keep a lot of new and technical information on my Dad's medical condition in my head to explain to far off family members. Two years prior I could not have done that!

P.S. Since my Gamma knife and other work on my head for the brain mets, I also felt the need to somehow add something to the CoQ 10 for my brain health.

[MJo]

Steph - Thank you for reminding me about natural supplements. It came at the right time. After complaining last week to this board and some other survivors I know, I decided I must accept my (hopefully temporary) cognitive problems and try to accommodate them. I plan to ask my boss if I can move to an office in a less busy location so I have fewer distractions. Thanks to your reminder, I will also visit my health food store this weekend to look at some supplements. I have to be careful that none of them raise estrogen levels, since I'm ER/PR pos.

[StephN]

Happy supplement shopping MJO.
Recognizing and accepting these memory problems allows us to go to the NEXT step and try to make it better.

It is scary at first when we realize how impaired we are feeling, and many of us try to hide the condition. When work product or home making suffers, others are going to notice.

As Debbie says, better to be open about the issue. It goes with the territory called BC, as well as the dropping hormone levels and general slowing down with age.

I had to thank my hubby this morning for reminding me of something, when it is usually Me reminding HIM!

[Soccermom]

Mjo,
an Onc I saw I Florida back in 2005 (when I was evacuated for Katrina), prescribed Provigil for me. I felt that it gave me little more focus, but was afraid of the risk of raising my bp, so I quit taking it...Just a thought,,,
Marcia

[AlaskaAngel]

Hi mjo,

I was the spelling bee champ prior to chemo, but at 7 years out the spellings come and go when I least expect it -- so those people in my life who knew I could spell almost anything have almost as hard a time with it as I do when I freeze up and stumble over spelling off the cuff -- and even just remembering which word it is I am trying to say.

I've had several different occupations over the years so making changes was just one more for me.

I think it is caused both by stress and by loss of estrogen. I don't take an AI, but tamoxifen was similar for me. And I do think the low levels of our CBC's during chemo reduce the total volume of oxygen available to the brain during some periods of treatment, perhaps even because the CBC's themselves may be less mature or less of them may be mature enough to carry a full load.... (leaving us missing a few cards from the deck).

I thought about what DLaxague said about being able to continue on autopilot after years of doing the work, and there is some truth in that too, but I have also found that even when doing the most routine tasks I can suddenly realize that I don't know what step is next, and that IS frightening.

The last visit I had with my PCP I was describing the issue of testosterone and completely lost the word I needed to explain (which was "converting" to estrogen). Since he is a good doctor he observed the deficit and waited rather than supplying the word for me and there was quite a pause while I struggled, before he suggested it. But I know he was aware of the problem.

You are not alone in experiencing these things.

AlaskaAngel

[dhealey]

I too, suffer from chemo brain. I will be talking and can't think of a word I want to say or I will be writing in a patient's chart and the hand and the mind aren't working together and I end up writing something that makes no sense. I read recently in a medical journal that chemobrain can last up to ten years past your treatment!

[Jackie07]

Coupled with my previous brain surgeries, my chemo brain had cost me my teaching career. Will have to make a new start again this summer. Oh, well. I love the phrase "Life is not fair but God is good". Everytime I have a major surgery, I would lose my job after about a year. But guess what? It may take a while, but things always turn out better. There's a Chinese saying: "A 'dangerous (critical) point' can be changed to a 'turning point'." I am embracing another turning point this summer.

[Yorkiegirl]

Steph N. wrote: (Then I found another one called "Neurozyme" by New Chapter. For "Supercritical Mental Clarity." It does have Ginko along with many other good things.
One thing I like about it is that it "reduces cortisol," a stress hormone that makes us hold the spare tire fat. )

Steph I just bought some of this, this week-end, do you remeber how long it took to notice any improvement?

[Donna8]

Hi Mjo,

If this doesn't say so, this is Donna, my ID seems to have vanished. Anyway, here's some really interesting stuff to read - excellent article on estrogen and the brain.

http://www.sfn.org/index.cfm?pagename=brainBriefings_estrogensInfluen ceOnTheBrain

It just makes sense to me since our chemo doesn't pass the blood brain barrier - look elsewhere - but the AI researchers seem to be ignoring this, along with many other side effects that are significant.

Best to You, Donna

[StephN]

Hi Yorkie fan -
Glad you are taking some kind of "memory aid" to help keep the cobwebs from accumulating.

As for time to Mental Clarity - that really has not happened! I noticed a gradual improvement, so decided it was enough to offset the age, hormone drop, chemo holdover, etc.

I am hormone neg so have never taken at AI. Just a lot of chemos and work on my brain mets such as Gamma Knife.

P.S. Donna there has been a lot of evidence that the ravages of chemos have a way of affecting the brain other than by crossing the barrier. When our red blood count is very low we are not getting the normal amount of oxygen to our gray matter, for one thing.

[R.B.]

Long chain Omega 3 DHA is essential to neuron and brain function.

Please see http://her2support.org/vbulletin/showthread.php?t=24410&highlight=greek+diet

for other discussions on reasons to consider your omega 3 intake.

RB

[chicagoetc]

Everybody here has been at this longer than I have. But I don't really expect much to change re cognition, have worked at my job through everything, and definitely notice significant changes. My focus is not good, especially multitasking (pretty scary when I'm driving and try to change the radio station at the same time). Like a lot of you have experienced, I don't remember/forget words or use the wrong ones often. My memory is somewhat improving but not good. If I don't write things down in my datebook at work, they simply are forgotten. If I meet with my supervisor and discuss something, I find myself having the same discussion the following week (she reminds me and is at times appropriately frustrated).

Again, I don't expect a lot to change. On the other hand, I'm pretty thankful for what I do have...in ways I never was. Stress is probably a factor but I don't think it is enough to cause the cognitive problems. Or at least not most. Some things we don't have control over. [But if antidepressants or supplements help some folk, that's great!]

Melanie

[I'm a social worker/supervisor in a community mental health clinic. Today a psychiatrist "yelled" at me for things she thought I was supposed to be doing. I was taken aback. This was the first time in many many months anyone has done anything like that. Leaves me appreciative of the kindness of others...and less willing to take that kind of interaction as any indication of the value of my life or work.]