Anyone else have herceptin brain?
 

I am on herceptin, but I started late because I couldn't get it until after ASCO last year. In fact, I started so late that I had largely recovered from chemo brain.

However, now I wonder if I am coming down with herceptin brain (is there such a thing?). I keep on forgetting things and my memory is getting worse. I am 40, so I don't think it's Alzheimer's. I was talking to a friend this evening about how I had a parsley plant for her that I was growing in a plastic milk bottle and I couldn't for the life of me remember the word milk bottle. It does seem to be getting worse as the treatment goes on. Having said that, I do routinely give one-hour presentations, so my memory isn't completely shot, but I can tell that my brain is somewhat fuzzy.

I have looked on the drug information and all I can find is 'abnormal thoughts,' which I think means psychosis, not having a memory like a seive. Anyone have any ideas?

questions
 

WERE you ER or PR positive and are you also on an antihormonal? Were you made postmenopausal by your chemo? Just not having estrogen around seems to be enough to cause it hard to find words, have trouble with short term memory and lots more. Estrogen seems to be necessary for optimal brain functioning(think of those poor men!) especially communication between nerve cells. Obviously many women have been treated with aromatase inhibitors, which inhibits one of three enzymes making estrogen in postmenopausal women, and they "seem OK" but I wonder if a careful questioning of those breast cancer patients in Europe who got aatihormonals but not chemo for early breast cancer, would lead to identification of an "estrogen-starved brain" syndrome. Just food for thought!

I agree with you Lani.
I too have had rather frequent "loss for words" during piddley conversations... I have a very demanding job and fortunately the focus remains when I try hard, but when it comes to telling a story of something that happened recently, I lose my train of thought and have to back track. I catch myself every time and it is frustrating.
I am 43 and finished chemo in may '05. On herceptin now. For sure its the hormones (or lack thereof).

Maria

Chiming in on the lask-of-estrogen "Stupids"

Very Very frustrating - words just disappear - I can't remember things as well and I am definitely not as fast-thinking. It makes me sad... I miss my brains.

On the other hand I have become a source of amusement for family and friends... I try to think of it as my little way of spreading joy.....

These days, I can certainly empathize with my father who has Alzheimer's. It is so frustrating to have the brain not at full speed. Especially when you have a know-it-all stepson in the house!

I lose words, I lose wallets, keys, typing skills...yep, basically my mind. I would love to get back into training for non-profits, but I don't dare! I don't think it's hormones so much with me. I was sent into menopause in 2000 after mastectomy and chemo. I then has some chemo brain, but nothing significant. Mine REALLY kicked in after whole brain radiation, followed by Taxol. That was almost 3 years ago, I think, and it's been increasingly frustrating since then.

Love and light,

Lisa (age 48)

herceptin brain
 

Hi Christine,

I'm 30, still with estrogen coursing through me, and I also find myself forgetting words and loosing things. It bothers me, but I try to recall how I was before chemo for comfort.

I know for a fact that I forgot words or lost things before treatment, however, a red flag never went up then. Also, recall returned quicker because I wasn't so worried about it. Now, after all the drugs, when I forget things or lose things I feel a little panicky and think -- oh no, I can't believe I can't remember or can't find that thing, the chemo/herceptin must be making me stupid, I hope it is reversible. Since my brain shift gears into the "oh, no" mode, I think it distracts me from remembering or finding things and feeding the fear.

Don't get me wrong, I am a believer in Chemo brain, and also Herceptin brain to some degree. I have felt it. We have so many chemicals in us it is bound to get in the way of something. I just think that stressing about it exacerbates the effect. In a self-fullfilling prohecy kind of way, maybe it becomes difficult to remember things when we attach so much significance to the ability to remember.

Now these are the things I like to tell myself so I can remain OK with this bizarre side effect. (I find support in my theory when I watch my young, healthy peers loose and forget).

If this makes little sense, then I reserve the right to blame my babbling on chemo/herceptin brain ;) .

Shannon

I am so glad that you mentioned this!!! I am going to print this thread and take it to my oncologist...she says that she has not heard of "this type of side effect" before...and I was beginning to think that I was...um...now...what was that word...ah yes...NUTS!!! Just went right from chemo-brain into Herceptin-brain. Reading about all your experiences furthers my love for this site!!!

I happily am not on anything and I forget things.

On a more serious note,

1. Your brain is made up of a high proportion of fat 60 plus %.

2. DHA in particular is essential to brain function

3. Books on the subject link low levels of DHA to all sorts of mental disorders, eg bipolar, adhd, age related degeneration...........

4. A book I have just purchased over the net but not had time to read suggests potential links between malignant brain gliomas to fat intake by examination of fat content of tumours - DHA was low and LA (linoleic omega six) high in brain tumours. [Smart Fats by M A Schmidt]

5. And based on little more than fresh air and inklings could Herceptin through interaction with the fatty acid pathways interfere with the body's elongation and production of long chain fats both omega six and three based? IF this off the wall thought has any foundation maybe taking in the DHA from a food source so saving the body making it might help ensure your brain gets the fuel it looks like it needs.

No definative answers, but food for thought, and maybe more reasons fro balancing the threes and sixes, and taking some high DHA food sources - a trial suggested the body's take up tails off at 2grams a day.


RB

more than one cause
 

My personal pet theory is that it is mostly the repeated drop in oxygen-carrying capacity of the blood during repeated doses of chemo that causes enough damage to the brain to result in "chemobrain".

I'm not sure what happens with continuing traztuzumab or with continued estrogen deprivation. It sure would be nice to see whether anyone is looking into it seriously so that maybe they could find a way to soften the net effect, because most of us will be around for a long, long time, and we already know that even more memory loss is common with aging.

AlaskaAngel

kat in the delta
 

I too have the Chemo/ Herceptin brain. I write down everything. my tables,etc. are cluttered with notes to myself. I think I am getting worse. In fact, I wanted another MRI done on my head. I cannot seen to finish but maybe 1 task per day, if that much. What is the latest news on this slow brain syndrome???? Please E-Mail me. p.s. I have eeven sent e-mails to myself. Please e-mail me,too.

kat in the delta
 

I too have the Chemo/ Herceptin brain. I write down everything. my tables,etc. are cluttered with notes to myself. If I don't SEE IT--I FORGET IT !!!! I think I am getting worse. In fact, I wanted another MRI done on my head. I cannot seen to finish, but maybe, 1 task per day, if that much. What is the latest news on this slow brain syndrome???? Please E-Mail me. p.s. I have eeven sent e-mails to myself. Please e-mail me,too.

I keep blaming my forgetfulness and inability to think, write, or speak quickly on chemo induced menopause. I know what I want to say, but can't get the words to come out right!

Some days I feel like I can barely function mentally and I haven't had chemo since Jan. 19 although I still have the every 3 week Herceptin.

I have to concentrate quite hard even to type these words and still have to go back to correct typos.

My onc says she's never heard of this phenomenon as a side effect of Herceptin and lays it at the feet of chemo. So how long does chemo brain last? I can't help but feel Herceptin has some part to play in this, but how?

This site is so wonderful! To read everyone's difficulties and frustrations with chemo/herceptin brain was just as good as reading a comedy script. It's so nice to see I'm not rowing this boat alone with the phrases "has anyone seen where I had put my glass of water?" or telling a friend the same story twice before as she politely tells you this, you're wondering "I did?" Then we chuckle that I'm probably forgetting something else I wanted to tell her with telling the SAME story for the third time.

I keep my family amused daily. I had hoped that after chemo my brain had a chance of coming back, but now reading that herceptin might continue me in this fog for a year, oh boy. Next school year when I return to my job as an associate in the high school with special education, I'm not sure who's going to be help who, but I can hear the laughter already!

Thanks everyone for the mind in the clouds stories.
Sue

I can relate to chemo brain, and I think Herceptin brain also. Time is one of my biggest problems. Thnigs that happened in the past could be a half day ago, a day ago or a month ago. I don't seem to have much of a division of days. Some of this is normal as one grows older, but I think mine is exaggerated. There seems to be a slight blurring of memory also. Did I just think something? Or did I really do something? That division is less clear than ever. Anyone else with time problems?
OT--Einstein supposedly said that the reason we have time is so that every thing doesn't happen at once! Humm.
Janet

I've had it too, and it drives my older son nuts, but everybody else is tolerant and help me when I forget. I saw an article probably about a year ago that said in a study of women who'd undergone chemo, that up to five years later quite a high percentage of them still had difficulties with memory. Gives us something to look forward to. I'll see if I saved the article, but I can't remember if I did or not.

No title, can't remember the words!
 

Oh boy, am I glad to see this thread! I finished chemo almost nine months ago. I don't remember having much chemo brain, but now the "lost word thing" is driving me crazy! I do remember seeing a brochure for a survivor's convention that had a session called "Why is my purse in the freezer?", and that was about chemo brain. But now, after 10 months on Herceptin and 6 on Arimidex I am a complete airhead. I stop in the middle of sentences and say stupid stuff like "I just lost a word". Christine's story about forgetting "milk bottle", I get it. I can also relate to the "lost time" syndrome. Was it yesterday or 3 months ago? Weird stuff isn't it? I have no idea weather it is Herceptin or lack of the big E. I had the ooph at 44 so that I could take Arimidex, so after the chemo forced me into menopause I pretty much stayed there. I am so thankful for you all, helping me to see that I am not alone and finding some humor in it all.

God Bless,

kat in the delta
 

I think we all need to print this and give this info. to our oncs. and to the NCI, and the American Cancer Society. I do not have a printer now,but will foward to my sister who had breast cancer 6 yrs. ago.{{ She does NOT have this much memory lost---she was HER2 negative, but ER positive. She took A/C & taxotere, then 5 yrs of tamoxifen, now aromason(sp?) She does have a husband that is a perfectionist &does ALOT in their house.}} My brain & memory is Mega times worse now. With all men(husband and 3 sons), they think I am just faking !!!!! I have always been the one to do everything regarding the house++,even tho' it was never perfect then. {WE women are made to be caretakers---but, men have a hard time with this}.
My husband cannot understand WHY this house is a wreck and will not now,nor ever has, lift a finger to help clean up!! He continues to blame this messy house and all disorganization on ME, and he says since the Major Chemo is over--(can't even remember how long ago--just a few months),that I should be well by now. But, I'm now taking Herceptin for at least a year. Herceptin must definitely affect the brain. Who in here can relate???? Any solutions, or info.????

So many factors impact memory
 

including, let us not forget, stress. Certainly we have all had more than our fair share of that. Add chemotherapy, season with radiation, Herceptin, an oopherectomy, a dash of aromatase inhibitors, a dollop of scans (left and right), and (for fun) top with a "little" Gamma Knife and stir! How could we not be a little muddled/befuddled?

I, for one, fake it as much as possible. I can see loving relations waiting for me to forget my middle name or some other vital piece of information. I try never to give them a bit of satisfaction. Try to throw out some multi-syllabic words at least once in every conversation just to keep everyone humble and a bit off kilter! I still have more vocabulary words than most of the men in my life. Hope this post doesn't sound arrogant but my words, like my breath, are a part of my fighting spirit. I try to keep a few around polished, like shiny stones, to use whenever they appear, like a gift.

Mary

Thank heavens for this site !!
 

I was talking to a friend yesterday and told her that last week I couldnt remember the name of the road where I live, and have lived for nearly 7 years (!) and how it had scared me. She said have you looked at the her2 site ? , there is a thread on there exactly on this subject, and here it is and I dont feel so bad ! It could be the results of chemo, herceptin, arimidex or zoladex (UK equivalent of lupron ? ) but at least I m not going mad ! Thankyou !

I also suffer from "herceptin brain" in the same way as all of you but have been off herceptin now for 5 weeks. I still get the runny nose so perhaps the effects of the drug remain in our systems for some time. I was taken off herceptin because of my heart and low (42) MUGA score. In looking under Resources on the her2support site to see what I can do to get my score up and what this cardiomyopathy my onc described this as and I noticed that one of the symptoms was poor short term memory as the brain is not getting enough oxygen. I wonder if even those of you who have alright MUGA scores could have at least a reduction in your brain oxygen thus causing you to be functioning at a less than normal level? Just a question.

Cathy

kat in the delta
 

I've never heard of a MUGI(can't even remember what I just saw!). Is that the nuclear test of your heart muscle?? if so, that is all that my Onc. has sent to do about every 3 months. I really do not feel well--alittle out of breath at times. My memory is in bad shape. I am too thin now. Altho' not from the chemo, I've done it to myself. I did see where thin people are more likely to have HER2 positive somewhere------Need more Omega 6 and Omega 3's. But,1st, tell me what TEST that is for your heart????? THANKS, kat

Kat;

It's called a Gated Cardiac Scan and is done in the nuclear medicine department of the hospital. They inject a drug firstly to prepare the red blood cells to accept a radioactive dye which is injected 30 minutes later. In this way they can visualise the blood in the heart. They use a gamma camera close to the heart to take images of it to determine how well it is functioning. In this way they test how much blood is being pumped through the heart and how well it pumps....i.e. with vigour or without kind of thing. I know that as my score went down I became more tired and remained with chemo brain....which I assumed was chemo brain....now I wonder. I thought that it was standard for everyone taking chemo or herceptin to have this test done regularly.

Cathy

kat in the delta
 

CathyA,
The drop in oxygen sounds right to me !! It is VERY bad when you forget the cell #'s of 2 of your own sons!! I think I may be getting Herceptin this coming Monday, not sure. It helps to have a special day like Easter and to look at a calendar to figure out time. Then I have to figure out if I had it before or after------I give up---I didn't mark it on the calendar--- think I'll just call the Onc.'s office. Moving to a different house right before chemo. has made matters worse for me. We all should start doing "crossword puzzles" and things that dementia and older people do ?? Know any more self-help ways ?? How do any of YOU remember details,etc...?? Kat in the delta ( ps) I think I need to be tested again soon.

Kat;

I would definitely talk to your onc about this. Although I get tired I do not get as stupid as I did during and right after chemo. You're right about doing crosswords or something though. When I first went back to work I was so forgetful...... but after a month of thinking and doing around the office I feel much more like my old self. Although I am tired now I am not like that at least. If you are very thin perhaps you are not eating enough. Also, do you over exercise. You said that you did this to yourself so I am wondering if you have sort of lost interest in eating and need supplements? Take care of yourself....you need your energy!

Cathy

kat in the delta
 

Thanks for explaining the test. I do get tested every 3-4 months, but my Onc. is foreign and when I ask him "?'s", he just says, "You're alright. Don't worry!" I'm asking the nurse for copies from now on. I want to see my #'s. What other tests do you get beside the Blood Chemistry Profile ?? My sister who had BC,not HER2+, asked her onc. about herceptin, and he said that without herceptin a person has a 30% chance the cancer will not come back----- and a 40% chance with the Herceptin. 10% difference. When you reverse that, it looks a bit grim. I did read where someone was taking a vaccine (clinical trial) to increase their odds at Walter Reed, but I can't remember where I saw it.---Check that out--kat

Kat;

I know that odds don't always look good for us but I keep thinking that someone has to be in that 40%....why not us?! lol. I am also looking at the vaccines. They are posted under clinical trials but lots of discussion about them would bring up many strings with a search. I have lots of questions about them as well.

Cathy

kat in the delta
 

No, I don't Over exercise. I do try to walk 5 out of 7, but have gotten slower on the walking, now. I just cut out all the fats,red meat,white rice,bleached flour, white sugar,butter/marj.and used substitutes of spenda, stevia, &sweet 'n low for sugar--liquid marj. for butter. I realize now that everyone needs some fat and raw sugar instead of all those subs. "tho, Stevia is not bad because it is made from a plant. I have tried to eat more organic and wholegrain foods, but still need to stop the substitutes. I have read that animal fat makes cancer grow. I do alot of snacking. kat

kat in the delta
 

CathyA,
Check out the thread with the drug Lapatnib !!!! See if you qualify to take it, now that you can't take Herceptin..Check out what Marily et al. says Let me know. How is a person ErB2?? Hope it helps. kat

Life is too short to let being wordless trouble me!
 

This is so me, I have been saying due to Chemo brain, menapause, lack of O2 (I now have been diagnosed with sleep apnea) and all those tests and surgeries (I had 5 to repair the tram that did not take), Oh and throw in mad cow disease lol, why not? My brain has gone south! My friends and family have been marvelous! I told them please "do be impolite and put in the word for me".. I am frantically looking for it!!!! My eldest son will not "give" me the word but gives me another sentence that may mean the same thing, He also has been buying games that he plays with me at least weekly. We have friends, who thank heaven, like to play games and they also come over for game night. A little brain exercise never hurt anyone.lol...I did a study with a speech therapist looking for why chemo brain, and she told me I had lost the common words, others like abacus etc were there, and my time to find a word took me not quite a minute and 1/2 !
Lucky for me when I tell someone to pull up a stair, and sit, my friends just do so without comment.
How lucky can one be!
Marily

Herceptin Brain
 

Found car keys in the bathroom today - dont know if its herceptin or the recently started arimidex. Can't find anything on medline that is specific to herceptin.

Thought for the day - if I had a brain I'd be dangerous!

Kat,

Liquid margerine.

If you are looking at your three and six intake liquid margerine is likely to be high in sixes.


Marily,

I like your dry self deprecating wit.


Me I'm happily not on anything and have found the keys in the fridge on one occasion!

RB

Ladies
 

From what I read on this site I think the women have the most beautiful and intelligent minds! Chemo brain or not YOU ARE ALL
GREAT!

With Love,
Jean

Anyone else have herceptin brain?
 

Maybe that's what I have. I'm blaming it on the Taxol. It's not unpleasant. It's even like a mild high. I describe it as "being unable to connect the dots." I'm not productive at work (I'm back part-time as a grant proposal writer). I sit back in my chair, close my eyes and drift away. This can't continue. Next week is my last Taxol (fingers crossed that my blood count will be high enough). I'm hoping to be more alert after the Taxol. I've had six Herceptins so far, will have three more weeklies, then switch to every three weeks. I hope this brain fog will clear up, because it's interfering with my job. Must remind myself that the most important thing is to recover and stay NED. I'll find another, less demanding job if I have to.

MJO
Just a note to say that some, maybe even most or all, of what you are experiencing as "brain fog" and closing your eyes and drifting away, may be due to the chemo and the premeds rather than the Herceptin, at least that was my experience.
I hated the thought of steroids, but I will have to say that I missed them when they were gone. It gave me a rosie outlook to life. Lots of energy, though undirected.
Further, I do think some of my "brain fog" has lifted 4 months post chemo. (Still on the Herceptin) and I think yours will, too.
I am reluctant to say that I feel that the sleeping pills I take could well be the cause of the lack of sense of time going in a straight line. (see previous post) I want to state this so that others know that it is not just Herceptin that could be causing the problem. However, I have read that Herceptin may cause sleep problems? It is a circle game.
If anyone wants to discuss this further, you may contact me off list.
Janet

Some interesting points
 

There was alot that I hadn't thought of. It could be the lack of estrogen, not due to drugs in my case but an unfortunate side effect of chemotherapy. It could also be a decline in heart function. Fortunately I am due to have my next MUGA on Wednesday. As for stress, I have had in in spades since my husband talked me into having the kitchen put in and the workmen uncovered a load of serious problems that they needed to fix. I also have a child undergoing potty training and a job that requires a good memory. I could be blaming the herceptin for something stress-related, since my husband has also done some pretty dumb things. Part of the problem may also be that I have both insomnia and tiredness, which is also guaranteed to slow down the brain a bit. I am hoping that it is something that will end when I stop taking herceptin in September.

Well, I am in your group as well. Chemo drugs do kill brain cells. Now, they say they don't cross the blood brain barrier but why do we get chemo brain? No one has been able to answer that one for me. Now, to help me here my husband has the same problems from anti depressants. So any of you on those drugs may be getting double damage here. At least the one good thing here we understand each other very well and so we joke about it. He says to me, "can you imagine what I would be like if I took chemo?" I pick up after him and he does me and we laugh about it. My son (age 27) says he is starting already and he doesn't use anti depressants of ever had chemo so go figure! Maybe, it is contageous. Try not to worry about it and enjoy what you do have. hugs, Sandy

Christine,

On top of your treatment it sounds to me as if you a coping magnificently.

And chemo and herceptin are so powerful why should they not impact on all sorts of things, including mental alertness. Just flu tiredness or stress can fuzz the brain so why not chemo and herceptin, and by the sounds of it you have it all.

I know I witter on about fats, DHA etc but if you have not looked at the subject you might like to. The fatty acid sythase pathways are cropping up more and more, and maybe part of the effect of these treatments is blocking them which could account for shortages in the brain etc. Its an idea that is based on not much more than a wiff in fresh air but if there is anything in it some DHA in the diet maybe two grams a days might help ensure your body is supplied.

As usual dietary changes should be discussed with your advisors.

Don't be too hard on yourself,

RB

Marley Omega 3 & 6
 

Hi Marley,
Would you explain in some greater detail the amounts of the Omega 3 & 6
for the average diet? I eat salmon 3 times per week, use lots of olive oil
and try to have Flaxseed oil 1 Tb. per day (not every day) eat lots of fresh
veggies and fruits, whole grains andyougart - but I am not sure if I am hitting
the mark (I also take Omega 3 supplements)...any advise on amounts.

Thanks,
Jean

Error R.B.
 

OOOPPS MEANT R.B. (not Marley)
re: Omega 3 & 6 Posts question....

Thx,
Jean

Jean re your questions;

Try the search facility above right using omega three flax etc as a search term.

Synergy is possibly a good word, as wide a ranging diet as possible of whole foods, greens highly, coloured fruits and veg, and some beans for fibre seem common themes in many books - it not just about fats.

Every thing has fat in it bacteria and broccoli included, and a mix of fats which vary with substance.

Those that write on the subject suggest the intake problem started with refining seeds and nuts to extract oils, suddenly introducing these powerful substances into our diet at levels never seen before.

Re your diet what you dont say is what else you eat, margerine, vegetable oils, processed food etc.

Quality olive oil cold pressed virgin is reported to be about 10% omega six, and refined olive oil up to 50% omega six. Even 10% of a lot is a lot when compared to say the omega threes in a teaspoon of fish oil.

Flax seed and oil are high in omega three about 50% omega three and 15% omega six.

BUT Corn, sunflower, safflower, soy etc etc are all above 60% omega six.

So as usual there are no easy answers. You have for a while till you get to know have to look at everything you eat in terms of processed foods, and read the labels.

There is a link already posted where you can check out the fat breakdown of foods. The report of the man with lung cancer which you will find under the search "Very thought provoking" emphasises how much six is intaken when even moderate amouts of seed oils canola etc are ingested.

Sadly farmed fish and livestock like us have a fat content which reflects what they have eaten, so they are having to feed farmed fish fish to try and up their omega threes! Grain fed ruminants also suffer from changed ratios of omega three and six. So maybe small wild type fish are best as wild salmon is so expensive and many fish are now farmed, mackeral sprats sardines etc.

I am sorry there are no easy answers, it is a case of check everything until you get to have a better idea of what fats you are taking in.

I am not an "expert". I have just read quite a lot. Magor dietary changes should be dicussed with your advisors.

I find the Ben Best article a useful reference point as covering a bit of everything, including a break down of some fats. The link is under "the importance of omega three and six" in the articles of interest section.

General agreement amongst those that write on the subject is the importance factor is to balance, rather than quantity, having said which withn sensible parameters less is probably better, but this is experimental territory and the trials have not been done, more is the shame, so I'm afraid its down to you!

I hope this helps

RB