Anyone else have herceptin brain?

[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

[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

[Cathya]

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]

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

[Cathya]

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]

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.

[Cathya]

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]

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

[Marily]

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

[Jean]

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

[MJo]

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.

[janet/FL]

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

[Christine MH-UK]

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.

[Sandy H]

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

[R.B.]

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

[Jean]

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

[Jean]

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

Thx,
Jean

[panicked911]

Oh My God- this is me ;( I never had chemo but the year of herceptain ( and estrogen deprovation) has turned my shot term memory to mush! My last three week infusion of herceptain was two months today and the muscle aches, stiffness etc. has definitely improved YEA! but brain function - NOT! It feels as if i am ADD and can't seem to get much accomplished - at work it takes me three times longer to do anything and as a lawyer this is problematic at best.

All of the research indicates that herceptain has a half life of at least three months. I was told not to expect any great improvements for at least another month since I was on a triple dose schedule.

The estrogen link I find really facinating. Does anyone know if research has been done on this and how many of us are on AI's and herceptain . I am betting not many but yet this seems to be a very comon problem. i am going to see my NYC oncologist next week and will definitely bring this up.


Susanne