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.