Anyone else have herceptin brain?

[Christine MH-UK]

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?

[Lani]

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!

[mts]

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

[Lisa1962]

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.....

[Lisa]

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)

[mekasan]

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

[suzan w]

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!!!

[R.B.]

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

[AlaskaAngel]

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.

[DeborahNC]

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?

[Her2nSue]

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

[janet/FL]

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

[juanita]

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.

[CherylS]

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.????

[marymary]

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

[lia]

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 !

[Cathya]

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