Anyone else have herceptin brain?

[kat in the delta]

Then if liquid marjarine is high in 6's, does that mean it's GOOD for you???? kat

[MCS]

Memory loss!


Well, at christmas time, I had to go outside my door to see my house number because I could not remember. I got myself a purse that a string for the car key so I could not leave them somewhere. I could not remember the letter "e" in the alphabet even if I sang the song

Under herceptin only, I still lose track of what I'm saying. I can't remember names, except a few days later, when I'm not even thinking about it, it pops up. When I speak I say words that I did not even intend to say and are not even realted to the conversation.

A couple of professors at USC in California wrote a recent book on memory and I am planning on writing to them and encourage them to do research on this memory loss with chemo patients. Every tiny bit helps, right?

I'm also doing Sudoku puzzles to help me concentrate. I have lost my concentration span also. I can't believe it's me, when I was working 10 hours days, totally focused on work. Go figure.

XO to all

MCS ( maria)

[R.B.]

Kat

This fats issue is complex and the best way to try and understand it is do some reading. The Ben Best article in the articles of interest section "The importance of omega three and six in breast cancer" is a good starting point. Print out a copy for yourself and that way it is easy to go back to. Do not worry if you do not understand a lot of it as long as you begin to get the gist. Type Ben Best into the search engine above right and look for the article and you will find a link.

Both the omega six and three familly are essential to human health. Unlike all other fats it needs the body cannot make them and has to get them from food, as do most living things. We get them from things that grow, and living organisms that eat things that grow who also concentrate them like fish.

Omega six essentially promotes inflamatory processes at a cellular level, and omega three damps them down, although it is much more comlex than that.

Omega six is essential but too much it is argued is bad news.

Historically over millenia our diets have more or less balanced the threes and sixes within maybe a range of 4:1 to 1:4. Along came better farming and machines that extracted oils from difficult sources like vegetable fats and suddenly six was cheap and everywhere and our consumption ratio of omega three to six went from say 1:1 to 1:10 to as high as 1:50.

This got mixed with high intake of saturated fats and people started getting heart conditions, but less on unsaturated oils - so the cry went out saturates bad unsaturates good, and it became a bit of a health mantra, and marketing persons dream.

Hunter gatherers had been eating saturates and doing quite well thankyou for a very long time. It is reported even in the "civilised" world in the late 1800s heart and vascular conditions were so rare students would rush to see a case so as not to miss it!

So we started avoiding saturates which contain little six or three and started gulping down polyunsaturates me included feeling very pleased with themselves.

There is now a growing band who think that the combination of the lack of threes with high sixes is a responsible factor in a lot of inflamatory diseases, and certainly a lack of three is recognised as a factor in vascular disease as a minimum.

So back to margerine. Margerine is manifactured and generally the result of high temperatures etc. Some has trans fats etc. There are those that argue this alone is a reason to avoid it. Many are made from high omega six fats.

So consuming margerine generally will push up your omega six intake. A tub is say 250grams, of which say 60% of the fat content could be omega sixes. To balance that with omega three is a lot of fish or flax oil that is the problem, even ignoring the wider question of the impact of processing.

So margerine is not all bad but it is not on my personal consumption list, and you are proably getting omega six from other sources. A scrape of butter is probably preferable as it is neutral in three six terms if it is essential for your toast.

Once you get used to it strangely you actually do not miss added fat. Before reading all of this I would happily buy feta cheese in oil, in fact everything in oil, expensive grape seed, walnut, addit to food, gently fry etc and be pleased with myself. Now about a desert spoon of olive oil a day and 5tps of fish oil is it. Everything else comes from whole food only, including nuts etc.

But as I keep regretably saying whilst there are very strong indications proof is limited as the concret crash proof trials simply have not been done, and unless funded by governments will not happen. There is no money for the drugs companies in telling you to eat better, from whole foods, so it is doubltful they will be funding it. (a whole other issue)

Trials based on reported diet are in my opinion a wate of time. I base this on my observation of human nature backed up by a tale of a student - he told me that he knew people (students) on trials simply lied if they strayed as they did not want to loose the money they were paid.

The tools are available fat biopsies and genetic arrays to see now genes proteins etc respond to fat. A fat biopsy will tell you what somebody has really eaten, not what the remember they might have eaten or think they should tell you they have eaten...and a gentic array will tell give you a good idea of you what their body is doing in response.

So its sort of back to where we started there is no real option but some reading to try and get the drift of how it fits together so you can decide what best for you, asidous label checking and getting some idea of the fat make up of food groups particularly the magor types of extracted oils.

Fats are heap powerful, and would be my number one dietary read recommendation, as would looking at balancing the threes and sixes.

Finally I am no expert I have just read quite a lot, and like others have a bit of a bee in my bonnet about it.

Do check with your advisors in planning magor dietary changes as as you wil begin to appreaciate as you read more fats are powerful factors in the body.

I hope this helps.

RB

[kat in the delta]

Just got back on this strand. My chemo brain has gotten worse. If you go to the 2005 San Antonio Breast Cancer Symposium...., type in chemobrain. Looks like Ritalin or one of those class of RX has helped alot. I was surprised. I also happened to run across a Dr. Daniel Silverman making a talk on a site, tonight. I had listened to another conference the side effects of chemo on the www.cancercare or the Y-me-ShareRing--1 of those site's teleconference where the Dr. said it was a true problem. There is a Dr. Noble in Rodchester(sp?) , N.Y. that says that some chemos do cause direct dammage to brain cells . If anyone finds it ....Let me know... I wrote all this in bits here and there and it is all a puzzle to me now...I Did get those names, but need help with info....let me know.
kat in the delta

[Rendi69CA]

I was thinking it was just me. People talk about chemobrain but, I am on herceptin along. I miss my brain too. I feel like a fool talking to people I don't know and I forget the conversation.

[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

[Christine MH-UK]

My "herceptin brain" started to get better about six weeks after my final herceptin and now, three months later, I am pretty much back to normal. My only problem now is that I have so much to catch up with! If you don't hear from me until February, the sheer amount of work I have to do will be why.

By the way, I learned today that there is a simpler version of the David Allen approach I found helpful (Ready for Anything: 52 Productivity Principles for Work and Life (Paperback)). Iwish I had known about it earlier. I found that on herceptin I had trouble keeping things organized, but Allen definitely helped.

Anyone who is receiving herceptin alone and experiencing this problem should definitely report it. I had chemo (albeit a long time before I had herceptin), but that makes it harder to demonstrate that the problems were caused by the herceptin.

I wonder if this problem is more common in patients who receive herceptin every three weeks, as I did.

[bobbiw]

http://www.healthtalk.com/cancer/pro...ex.cfm#FormTop

Kat is this the site/web conference that you were referring to? It is really very good. My husband and I listened to it together and I sat and cried during it. My husband looked at me and said, "Nice to know that your not nuts isnt it".

My chemo brain is getting worse right along. I am on Herceptin and Tamox, finished Taxol in May. There are days when I just stop talking because I cannot for the life of me find the words, days that I cant do the simple things that I used to do with ease, it is frustrating and thank goodness for my understanding husband. I feel like I need to see a neurologist for testing.

I am 50 and am going through menopause so I know that may be a part. But it alone cannot be this debilitating.

Bobbi

[kat in the delta]

Yes, that is one site....It is a terrible to have....be glad your husband is sympathetic with you. Mine + 27,25,and 23 sons
will not look at site and still think I am nuts....They do not even like me to talk to others with cancer...because they say MINE is gone....(just finished everything a month ago) I will have a blood test/ tumor marker test in 2 wks..OH..still taking Zometa IV to build my weak bones and prevent it from going in them....................any suggestions for getting understanding from these men of mine...?...kat

[kat in the delta]

I got herceptin with half of my taxol each wk, and then every 3 wks for aother whole year... I am a wreck....my multi-tasking went out the door... I lost my car keys, my cell phone--which was my back up brain, and 2 other imp. items which now I cannot even remember.in a matter of a FEW days..still cannot find keys nor phone with all imp. numbers--..I get so frustrated !!!!!!!!!!! and them no one in my family believes what is truly happening to me........except you here.......thank God for all of you!! ...There is also an article about Chemobrain at the 2005 San Antonio Breast Cancer Symposium....Look it up with a forward slash of chemobrain...they suggest an rx to try..........................................kat in the delta

[Merridith]

We are pioneers.

We are not just guinea pigging how herceptin works. We will also be pioneering the side effects for years to come. We are the first mass consumers of this drug.

I think that people are thrilled that we are living. Before many more of us would have died without herceptin. Now that the drug has proved it's primary purpose, the scientists can move on and document (and perhaps deal with) all the numerous side effects that are not fully catalogued.

[bobbiw]

Kat

So sorry to hear about your non understanding men......that sucks. My husband and my son pretty much laugh it off and I laugh with them, we have always used humor in our family to deal/cope. I wish I did have some words of wisdom for you in regards to getting them on your page.
Take care
Bobbi

[fullofbeans]

But where is my driving license? I know I saw it in my desk recently, but cannot remember for the life of me where the hell it is now..and no it is not in the fridge, actually little is found in the fridge nowadays: I seem to put back items that need to be refridgareted once open back in the cupboard. I always liked to do differently I should point out..it does not come without a price (they go mouldy..)

Anyhow I need to show my license for insurance purpose and I can hardly use chemmobrain as an excuse now can I?
Karixxx