Herceptin brain update - help needed from ER-,PR- patients on herceptin for primaries

[Christine MH-UK]

Well, a while back I posted on 'herceptin brain.' Unfortunately, it hasn't improved since I tackled the insomnia problem and continues to get worse. Because of this problem, I have been busy asking all of the patients who I see receiving preventative herceptin if they noticed that the longer they are on herceptin, the harder they found it to string a sentence together. Everyone said yes, so perhaps I am on to something. Anyway, I mentioned this to my oncologist and he is really interested in this phenomenon, which he called dysphasia. I looked up dysphasia after our meeting, but that only led to some more questions about what the problem of 'herceptin brain' is.

Anyway, I was wondering if people who are ER-,PR- and receiving herceptin for primaries could help me pin down exactly what their problems are, if any, so he knows what to look for. I am restricting it to ER-,PR- because that removes all of the problems with it possibly being the aromatase inhibitors causing the problems. Also, just primaries because that removes problems that might be caused by the cancer itself. I am also only interested in what has happened to people since they started on herceptin by itself (not including herceptin-based chemo and radiotherapy), since I believe that this is a problem that builds up gradually (it did for me).

So, here are my questions relating to dysphasia. This relate only to what you have experienced since you started on herceptin alone.

Have you found it increasingly hard since starting on herceptin by itself to:
1) find the names of things when you speak to other people?
2) find the names of things when you are writing?
3) put words in the right order in a sentence?

4) Do you increasingly describe objects rather than put names to them? For example, you might call a hat 'something to put on your head?.
5) Do you do sudoku or otherwise work with figures? If so, do you find it increasingly hard to work with numbers since you started on herceptin by itself?
6) Do you find it increasingly hard to understand what you have read?

General herceptin-brain questions:
1) Do you find it increasingly difficult to concentrate since you started on herceptin by itself?
2) Do you find it increasingly difficult to motivate yourself since you started on herceptin alone?
3) Are you increasingly depressed or anxious while on herceptin (since these conditions might be root causes of some people's problems)?
4) Do you suffer increasingly from insomnia since you started on herceptin by itself?

Have you come off herceptin? If so, have you notice any changes in your ability to think and how soon did this happen? (For my sake, I am hoping pretty soon).

I started herceptin over a year after I finished chemo and had pretty much recovered from my initial chemotherapy. I find it harder to find the names of things when speaking, but not when writing. Sometimes the wrong word will come out when I speak or I will describe something: saying 'a something to do' instead of 'career' recently. I have no problems with verbs. I can sometimes come up with the words but find myself stuck on how to put them in the right order. My husband loves sudoku and therefore I don't know whether my ability to do sudoku has worsened because I can't get one past him, but I think that my eye for figures is as good as ever. I think my reading comprehension has gotten worse.

I do find it increasingly had to concentrate and to motivate myself. I am not increasingly depressed or anxious. In fact, I am now so laidback I am about to fall over (not at all like me before herceptin). I have my insomnia under control, but take the medication, trazodone, only when I seem to be getting back into a cycle of insomnia, so I have only taken about four so far. Oddly, I ended up on trazodone, whose licensed use is as an anti-anxiety medication, because I went to the doctor and she actually asked ME what I wanted and it was the first thing that came to mind. I thought it was primarily a sleep aid, but it is mainly licensed as a daily anti-anxiety medication. I know I should care more about work, but find it incredibly difficult, even though I used to be really motivated. My get up and go has got up and went over the past nine months. Still, for a 34% improval in survival (so far on the HERA trial and I would bet that it goes up), it is worth it. My only concern now is what happens if two years of herceptin turn out to be brilliant.

Any comments about other people's experiences would be much appreciated, even if your experience is that you had no such side effects.

[R.B.]

I would be fascinated to know whether those suffering from herceptin brain

1. Balance omega threes and sixes
2. Take omega three supplements
3. Flax oil /seed how much
4. Fish oil of DHA EPA supplement and how much.

Whilst of course thaere are probably lots of factors, if herceptin as reported does not cross the brain barrier it must be a secondary cause rather than herceptin itself acting on the brain.

I have previously asked if Herceptin blocks the fats pathways based on seeing it suggested in a trial that it intervenes in the fat making pathways. To date nobody has clarified this.

The brain relies heavily on DHA and AA. DHA should help both the brain and mitigate against cancer. Searches on many mental conditions and DHA conclude with suggestions for possible positive outcome and further investigation. Bipolar altzheimers etc.

Excess omega six over three with reference to normal tissue has been linked in trial with brain tumours from biopsiesof tumours.

IF AA is short it might be a double edged issue due to it sitting at the top of the inflamatory pathways.

The body is protective of DHA at low levels but I have not seen suggestions of the same protection for AA.

Please see posts on omega three.

Please consult with your medical advisor on dietary change.

RB

[juanita]

You have really hit the nail on the head with the way I feel. I just thought it was me. I finished chemo 6/05 and herceptin 6/06. And these problems got worse. To answer your questions: yes, i have a hard time naming things- both in writing and talking to people. I cannot think of what order words go in sentences or even what words I was saying. I feel like an idiot sometimes. I couldn't even think of what an airplane was one day. Numbers are worse than words. I have someone double check all of my work with numbers. As far as understanding what I'm reading- it depends on what I'm reading. I think i concentrate okay, i've always been fidgity so not sure if it's worse. And motivation- what is that? I thought it was depression and the doc has me on zoloft. And the insomnia got so bad I take ambien every night. Even then I can't sleep some nights. It feels like my body just won't shut down until i collapse from exhaustion. I haven't noticed any changes yet, but I've got my fingers crossed I see some soon. To answer R.B. I only take one omega-3 every day instead of the three times the bottle says. And I eat kashi crackers and cereal with flax seed in it but don't take any of those supplements.

[chrisy]

Hi Christine (great name)Well, I haven't noticed this, but then I haven't been looking for it. I did experience chemo brain when I was getting chemo - spacy, losing my place in the middle of a sentence - I was pretty much a head on a post.
When I went on Herceptin alone in March 05, the fog gradually lifted and as of now I feel that I am pretty much fully functional. I do work with numbers for a living and was pretty much worthless during chemo, but am "back to normal" as far as I can tell. So I guess if I have "Herceptin brain" , it is so far a mild case.
Regarding the general symptoms, I do occasionally have bouts of insomnia, which I have attributed to worrying about CT scans, stressing over work, or watching too much "24". I, too, am generally more laid back since living with this diagnosis definitely changes your view on what is worth getting worked up over. Surprisingly, I sleep better than ever most of the time.
I do find it difficult to get motivated, but again I have attributed this to changing priorities.
Sorry, this may not be very helpful, just my experience. Re the suduko, maybe your husband has been practicing!
I do take EPA/DHA supplements 6000 mg/day and some flaxseed oil...along with a host of other supplements, so maybe something is working...
Interesting topic - I'll be more aware of watching for these issues.
Take care
Chris

[penelope]

I have been calling it foot in the mouth disease. I used the word "interbreeding" in a conversation the other day because I could not think of the words inter racial marriage and by the way my sister in law and brother are pissed at me for it. I have been saying for over a month....I can not think. It has affected my relationships at times. It seems no one "gets me". I thought maybe it was because I was not exercising my brain.

I am taking fish and flax oil, I do try to balance 3:6 (although I think I am very unsuccessful at this,not quite sure how to do this).

[Annlyn]

I have Herceptin in response to secondaries but am ER- and PR-.
I had chemo brain for many months after both my first and second chemo courses however all of my thinking faculties (and physical for that matter) have improved since I have been on Herceptin alone. I had Herceptin weekly from November 2001 till August 2005 (minus a few weeks holidays each year) and since then have had it 3 weekly.
I have continual low grade mucositis, get cranky the night after the infusion and can count on at least one sleepless night in the few days after treatment.
I also am on 3 weekly Aredia and for some reason (perhaps the hydration) do not get as cranky if I have Aredia first and then the Herceptin. I take paracetamol with the Herceptin and again 5 hours later which helps me sleep that first night. I definately used to get depressed for a few days after treatment especially when it was weekly - so therefore I was depressed a lot of the time!!! It took me a long time to recognise it but I now believe I am on top of it. I plan a full day of activity for day 2, whereas I used to just think poor me and head to bed. I also get lots of exercise - dance about 5-6 hours per week, 1/2 hour at the gym 2-3 times per week and take a couple of longish walks per week. I try to eat good food but I would be lying if I said I stick to a good diet!!!! Very few people who have met me in the last couple of years realise I had BC. It's not that I hide it it's just that I am now so well that the topic doesn't usually arise unless it applies to someone else.
This may sound silly but I actually think that it is the Herceptin plus the dance that has set me on the path to recovery. I did not learn to dance as a child, had always wanted to and finally took it up 3 years ago when I was very unfit and totally chemo brained!!!

[DeeUK]

Next week, I'm due to have my 5th 3-weekly Herceptin treatment. My first was at the beginning of May.

I'm Er- Pr-, and take Flax seed oil supplements at relatively low dose.. 500mg per day (when I remember!.. which is most days, but I do miss it quite often, and tend to be a bit sporadic in taking it).


Have you found it increasingly hard since starting on herceptin by itself to:
1) find the names of things when you speak to other people?
Occasionally.
2) find the names of things when you are writing?
Occasionally.
3) put words in the right order in a sentence?
Yes.. I've noticed this even more so, in the past couple of weeks. Not necessarily so much putting words in the right order, but more mixing words together. For example, I wanted to say "Bev & Dale", and it came out "Dev & Bale".

4) Do you increasingly describe objects rather than put names to them? For example, you might call a hat 'something to put on your head?.
Not yet!
5) Do you do sudoku or otherwise work with figures? If so, do you find it increasingly hard to work with numbers since you started on herceptin by itself?
I don't do much with figures, so haven't really noticed. Though I suspect I would find it more difficult than I used to. Though I think this may be due to finding it difficult to concentrate/focus on things, these days.
6) Do you find it increasingly hard to understand what you have read?
No.

General herceptin-brain questions:
1) Do you find it increasingly difficult to concentrate since you started on herceptin by itself?
I don't think so. I seem to have a bit more focus than I did when I was on FEC chemo.
2) Do you find it increasingly difficult to motivate yourself since you started on herceptin alone?
I do find it difficult to get motivated, but I'm not sure this is to do with Herceptin.
3) Are you increasingly depressed or anxious while on herceptin (since these conditions might be root causes of some people's problems)?
I have been more anxious lately, but this may well be because I'm exactly a year on from diagnosis.
4) Do you suffer increasingly from insomnia since you started on herceptin by itself?
I have erratic sleeping patterns, but I think this is more to do with not having a daily routine at the minute, rather than due to Herceptin.

[tousled1]

I am ER/PR- and just started Herceptin in June. What I notice is that I have severe headaches all the time (never had them before) and my hands get cramps and when I get up in the morning my feet really hurt when I stand on them. The foot thing gets better as the day goes on but the headaches and hand cramps continue. I also notice that my concentration level is less and that I have to sometimes think more about somethng before I say it or my words come out mixed up. Also, I must not forget the constant runny nose!

[Jade]

Perhaps this article will shed some light on our loss of brain power.



http://www.canada.com/montrealgazette/news/story.html?id=1ec4d342-867e-463a-b01a-1c6e16dc0fae&k=20388


Jade

[Becky]

I have finally decided to reply to this. I have had Herceptin brain for quite a while. I decided to respond now because I was just finishing a complicated memo for work. Again, I could not find the right word to use to get my point across. Many times I have to sit and really think about the right word. I will also, in conversation, describe something since I cannot find the right word sometimes. Also, my eyes tire more easily and it is harder to focus. I did get a brain MRI and my eyes checked. I feel it is the Herceptin (after so much discussion about this). I think this comes on gradually and then all of a sudden you notice its not that good. It takes awhile to suddenly notice.


I have been on Herceptin as an adjuvant over a year now and this phenomenon is very evident now. I just thought it was me - I also am not as motivated at work as I used to be (even when I first returned full force - but I did not start adjuvant Herceptin until almost 5 months after my last chemo and so went back into it without Herceptin).

I started balancing my omega 3/6 early in the game (actually 3 months prior to diagnosis) so if this is supposed to help, who knows what I would be forgetting. My last Herceptin is September 29 so by the new year, we should start a new thread. There are so many women on this board who started Herceptin (like me) after last year's ASCO - the new thread should review this as well as weight loss and other things mentioned in regard to adjuvant Herceptin.

Have a nice weekend

Kind regards

Becky

[Mgarr]

Have you found it increasingly hard since starting on herceptin by itself to:
1) find the names of things when you speak to other people?
2) find the names of things when you are writing?
3) put words in the right order in a sentence

Yes to all of the above. I had Herceptin for 1 year and completed June 21st. It may be partly due to lack of sleep because this would happen to me prior to diagnosis if my sleep patterns were erratic. The insomnia is a little better but I still have the memory loss, not being able to say the proper word is the most frustrating!

Mary

[StephN]

Good questions.
There have been threads on the ubiquitous "chemo brain," but this is the first I have seen on Herceptin brain.
I am ER & PR neg, but only got Herceptin when mets discovered.
I had so much chemo for a while that I had a hard time getting back to functioning reasonably well. At times I really felt like "mush-for-brains." And the effort to think and focus would be very tiring.

Now, I have been off chemo for 4 years and taken Herceptin that whole time.
It is hard to know what is happening since I am a little older and post-meno, with the hormone changes. Many of my friends who do not have cancer think I am doing better then they are in the thinking department.
Sure, I can track better and analyze better by now, but my vocabulary shrunk quite a bit the past few years!

So, give yourself some time and see how you do with these speech and thought losses. I also feel that the stress and worry takes a toll that needs to be factored in to the fatigue equation. This is something we usually keep more to ourselves and don't let on to our family and friends.

Try this, and see how you do:

I can read this! Can You?
fi you cna raed tihs, yuo hvae a sgtrane mnid too
>
> Cna yuo raed tihs? Olny 55 plepoe can.
>
> i cdnuolt blveiee taht I cluod aulaclty uesdnatnrd waht I was
>rdanieg.
>
> The phaonmneal pweor of the hmuan mnid, aoccdrnig to a rscheearch >at Cmabrigde Uinervtisy, it dseno't mtaetr in
> waht oerdr the ltteres in a
> wrod are, the olny iproamtnt tihng is taht the frsit and lsat
>ltteer be
> in the rghit pclae. The rset can be a taotl mses and you can sitll
>raed
> it whotuit a pboerlm. Tihs is bcuseae the huamn mnid deos not raed
>er vey
> lteter by istlef, but the wrod as a wlohe. Azanmig huh? yaeh and I
> awlyas tghuhot slpeling was ipmorantt! if you can raed tihs
>forwrad it.

[romo9]

I am on my second year of herceptin for primary B.C. Cant say I have noticed any changes at all. If anything my cryptic crossword skills have improved - time spent waiting in doctors surgeries put to good use.

[Berta]

My tumor was Her2 +++ and ER/Pr-. I don't know about the herceptin brain. I just finished herceptin three weeks ago. I do have trouble with numbers sometimes but then I never was very good with numbers. I love to read but have noticed I'm not interested in reading now. I don't know if its a concentration problem or just can't find anything that interests me.

What I DO know that I've had with herceptin is hot flashes and insomnia. This has been a major problem. Dr. finally put me on a combination of Effexor in the morning and Klonipin at bedtime and this has really helped. I also have running nose and just a lack of energy. Having said that I also have a new job that is very demanding so I don't know if the energy is herceptin related but the insomnia and the hotflashes definitely are. I also have muscle cramps (feel like charlie horses in places I didn't know you could have charlie horses (abdomen, chest, toes, back, hands. I think that is herceptin related. At least I hope so. I am very glad that I was able to take the herceptin but I don't think its the side-effect free drug we were told in the beginning.

Having said all of this, if the doc wanted me to keep taking it longer, I wouldn't hesitate so I guess it really wasn't as bad as I've made it sound. BERTA

[Deb]

Dear Christine,

Here are my responses to your questions. Thanks for bringing this up. I've been feeling the fool lately due to the words that just won't come without providing detailed definitions to those around me. Its up to those of us on Herceptin to advise the Doc about the side effects as they don't really have the entire 411 on these yet.

Have you found it increasingly hard since starting on herceptin by itself to:
1) find the names of things when you speak to other people? YES
2) find the names of things when you are writing? YES
3) put words in the right order in a sentence? No

4) Do you increasingly describe objects rather than put names to them? For example, you might call a hat 'something to put on your head? YES
5) Do you do sudoku or otherwise work with figures? If so, do you find it increasingly hard to work with numbers since you started on herceptin by itself? NO
6) Do you find it increasingly hard to understand what you have read? NO

General herceptin-brain questions:
1) Do you find it increasingly difficult to concentrate since you started on herceptin by itself? YES
2) Do you find it increasingly difficult to motivate yourself since you started on herceptin alone? (Yes, for the first 3 months, turned around in month 4, much better in month 5)
3) Are you increasingly depressed or anxious while on herceptin (since these conditions might be root causes of some people's problems)? (Yes, for the first 3 months, turned around in month 4, much better in month 5)

4) Do you suffer increasingly from insomnia since you started on herceptin by itself? NO

Have you come off herceptin? Not yet, December 15 is the end of Herceptin for me.

Thanks,
Deborah
Dx 7/05
Lumpectomy/Sentinel Node Biopsy 8/05
IDC, 9 + nodes of 9 taken, ER-/PR-, HER2+++
AC-T/30 RADS/Herceptin 1x/3wk