Grrr!!!!

hooptiedoo

Grrr!!!!

Anonymous

I saw that when I logged in here too.......I didnt have chemo but several of my friends have so am familiar with "chemo brain"......

I wondered how long it would take for someone to bring up bc.org posting that on the first page when we log in here!!!!!!

bluesky

i too am very bothered by this! that and that now they are finding that taxol on a weekly basis improves survival!!! uuughhh WTF.

i had chemo brain, i worked during chemo and sometimes found myself in meetings not knowing what was going on, i found it so hard to keep up with conversations, i was easily confused and forgetful. i am a very smart person and never had this before, even my onco said yes it's chemo brain and things would go back to normal and yes they did, it's been one year since ending tx and thankfully, i no longer have these issues. every woman i spoke to who had chemo, had chemo brain, chemo brain does exist. i don't care what any self fullfilling article has to say they are wrong and maybe they should do chemo to find out for certain!

Paulette531

It seems as though they do that with a lot of the side affects of chemo, say they don't exist. I always reiterate, I know where I was before chemo and I know where I was after. I have been out of treatment since 10/15/2004 and was recently diagnosed with peripheral neuropathy that my neurologist said can not be from anything other than chemo and I will probably be this way for the rest of my life. For three years my onc said no, it isn't neuropathy, it just doesn't last that long. Yeah right!

yellowrose

I saw that the control group was 30 women.  Hello, that is in no way statistically significant.  The second study had different parameters with an equally small group.  I dislike how the media grabs on to these things and runs with them like they really mean something. I am dismayed that bc.org posted it, which seems to give it some credibility.

bluesky

i too am very upset that bc.org has posted both the taxol and chemo brain article they are not very significant.

acarr

My daughter hears me complain about the cognitive effects of chemo all the time and saw a story on the news about it the other day.  (By the way, my chemo was 17 years ago and I never fully recovered from the cognitive disfunction.) Here is a link to the article that the news story reported on.   http://www.eurekalert.org/pub_releases/2008-04/uorm-rdc041708.php

The article talks more about the effects of the drug 5-FU, which I took 8 cycles of, and is quite unsettling to me.  But it does confirm that this condition is quite real. (Of course, none of us here needs anyone else to tell us this is real!)

hooptiedoo

I've never felt as good as I did before chemo. However, chemo put me into chemopause, so I'm not sure if it's an age thing, a menopause thing or a chemo thing.

PSK07

My mom is 17+ years out and believe me, chemo brain is real and probably never goes away.  She cannot remember any book she read during her chemo or for about 6 months after or movie she saw or family things that went on.  Her short-term memory is shot. It isn't Alzheimers...before chemo, she had a mind like a steel trap. After chemo - ha.

my3girls

Oh....they need to expand that study!  There definitely is such a thing.  We can all attest to it! I could hardly put sentences together, lost my train of thought easily and was very very forgetful.  I am 9 months past my last tx...and I am not experiencing any of those side effects now, well...maybe a few, but nothing like when I was going through my treatments.

I used to be told I had the best memory...but during that time...absolutely not!

bluesky

hoppie-like you i've never felt as good as before chemo, i've been done for one year and some days i feel good, but some days i don't like today, i felt slightly nauseas and off balance, i don't know if it's tamoxifen, chemopause or synthroid which i now have to take for the rest of my life because radiation damaged my thyroid. sorry to get off topic from chemo brain.

mke

LOL. I was irritated too.  But I went back and read the summary.  A few problems:  small sample size, and they actually did see a difference in that sample size but the difference measured by their testing did not correspond to the difference the women reported.  Now guess what is at fault - their test???? hell no, it has to be the womens' reporting.

Well, duh.  Anyone one of us could have told them that yah we could sit down and do some dumb little test just about as well during chemo as before.  Some dumb little test IS NOT THE PROBLEM!!  The problem is so much more than any little test can measure.  It's sort of continuity of thought or memory - like knowing that you cooked meat loaf a couple days ago so you shouldn't cook it again tonight or that you have already asked your kid twice if they have done something.

I've had BC without chemo and BC with chemo - both were stressful, but BC with chemo gave me neuropathy and made me mentally impaired for a while.  I could still do the NY Times crossword but couldn't remember if I'd called someone, heck half the time I couldn't remember who I wanted to call.  I think they need a more precise measure.

LizFL

I absolutely know there was something wrong with my brain during chemo.  I had gone through some serious family problems prior to my diagnosis and in spite of all the stress, it never affected my speech, thought processes or memory the way chemo did.  I had already been through menoupause and did deal with some issues at that time like forgetting words, but no comparison to the way I was during and for quite a while after chemo.  I also seemed to lose some of my long term memory.  It has abated quite a bit (I finished chemo in November of 2005 and radiation in February of 2006) but I don't feel my mind will ever be as sharp as it was prior to chemo.  I am also on Synthroid now...but never knew the thyroid problem could have been caused by radiation.

Liz

PS...just had to go back and correct spelling errors....so maybe I haven't improved as much as I thought

AnnNYC

I haven't had chemo -- but that headline did annoy me, as did the one about weekly taxol.

My question is -- why does BCO use such inflammatory headlines?  Their own commentary on the chemo brain news says something like "small sample size, and other larger studies have found evidence of chemo brain."  Was it necessary to use the study author's conclusion as a title? 

I know for a fact that the New England Journal of Medicine, for example, does NOT allow results or conclusions to be stated in the title of a report -- just a description of the study performed (they'l make authors say "randomized, placebo-controlled trial of corn pads"  NOT "corn pads work!" or "corn pads are safe!" or "corns may be a myth!")

hooptiedoo

Bluesky, what you are saying does fit in this topic, because they're trying to say our physical problems during chemo are mythical, too. I'm totally disgusted with a lot of these studies. Have you heard about the one that is claiming women who eat lots of cereal during pregnancy have boys? Give me a break!!! What total, utter hokum.

roseg

I saw that article posted on another cancer board I frequent and I hoped it wouldn't show up here!

There are a bazillion reasons people have cognitive impairment.  It's silly to think that one study could "prove" anything.  Anxiety, drugs, early menopause - you can't boil all the stuff that happens to women with breast cancer down and say "nope."

hooptiedoo

Instead of wasting time trying to prove chemobrain doesn't exit, why don't they try finding out what it happens and what can be done to prevent it?

BethNY

I can't believe I just found this thread.  In my mind, I have composed a scathing letter to bc.org for posting that article.

GRRRRR is RIGHT!!!!

First of all, a study with 30 women, and then 17 women?  You've got to be kidding me.

Second, what do they think?  That we don't realize that it is a combination of things that add to our chemo brain?  I'm sure we can all admit that there are a ton of factors that contribute to chemo brain, HOWEVER, it is VERY, VERY, REAL.

I can't count the number of times I felt like I was in a fog, or my eyes glazed over.  I couldn't spell words right, I couldn't remember a paragraph I was reading in a book, and sometimes I had trouble spitting out words that should've popped right into my head.

I forgot conversations with people on several occasions!

I know that chemo wasn't the only factor in all of the above mentioned cognitive problems, but it sure as hell played a big part in many of them.

I find it demeaning that bc.org posted this article.  How dare you tell me what chemo does and does not do unless you have been through it first hand?

I am so glad to see that I am not alone in feeling this way!

Instead of wasting research dollars that say chemo brain isn't real, they should spend the money addressing the issues that almost all women who go through chemo experience.

bluesky

they should be investing all the money in finding a cure, not trying to figure out if chemo brain is real or not!!!

snowyday

You are so right I was very upset by that article as well.  I know when I was stressed I managed to work and my cognative abilities were so much better. Now I have think so hard to remember names and dates even walking from one room to the next used to happen occasionally but not like now. Now I have to actually sit and hope that the reason I was looking for something comes back to me.  There is a huge difference pre and post chemo and their study is so skewed.  Why on earth was it even published. Now I feel like there is something wrong with me they have messed with my head, I'd love for the people who ran the study to try chemo and just see how well they function after having your body crashed like this. I don't wish cancer on them I just wish chemo on them.  Angry in Canada

snowyday

Oh one other thing why don't they publish studies that help us instead of hinder us as quickly. Yeah right wish on.

SuperMujer

Bluesky,

I love the word "chemopause" If you don't mind I think I'll replace it for all of my other excuses for not remembering anything!!!

What were we talking about?  

Oh yeah, chemobrain......

It stands to reason that a toxic agent injected into a special port into your body, which by the way drops your hair out, causes eosphagitis and Gi bleeds by sloughing off a layer of your rapidly dividing GI tract (to just name a few) would have SOME effect on your brain as well!!!

Anyone who thinks its a myth should be made to go on four cycles of Adriamycin closely followed by four more cycles of Taxol.

Now that's a study I would like to see the researchers do, otherwise they should stay out of the debate (because there really is none)

Regards to my fellow "airheads".

Keep the faith and dont forget to write everything down, and then proceed to lose the list like me.

LA

BethNY

LA-- just an aside... chemopause is the word for when chemo induces menopause-- taking away your period, bringing on the hot flashes.

SuperMujer

Thanks Beth,

I should know that as a nurse anesthetist with a graduate degree in nursing.  

Funny, but with TWO diagnoses of BC behind me I have always avoided reading anything remotely related to the subject. My way of protecting myself I guess! It has been added to my BC lexicon.

LA

iodine

Wasn't it only last year that the media was full of stuff Finally recognizing chemobrain was REAL! 

As I've said before (bare with me)  I'll not believe anything they tell us till they find a cause and a cure to go with it.

I get so fed up with these stupid low number studies--they don't mean crap and shouldn't be published.

goes back to the one stating French Fries contributed to breast cancer.  HAH!

AnnNYC

French fries???!!!

Sounds like the study we did right here, stating that the cause was Barbie dolls, those red wax lips, and/or being one of 5 sisters...

http://community.breastcancer.org/topic/7/conversation/695153?page=1

BethNY

That's one of my favorite threads Ann.

I guess the point is, that we all read these frivolous stories and hear about them on the news.  I just expect more from bc.org, as far as what they put front and center on the homepage.

That's the first place I direct newbies to look to get info about breast cancer.

BC.org has the power to control every single thing they post for us to read.  And I like the fact that they put a column on the right describing their thoughts on the article.  I just have a hard time believing that Marissa Weiss would approve an article like that for her web site.

althea

I was just looking for that article and couldn't find it.  Either it was removed, or the search feature is showing its worth.  Well, no matter, after all chemobrain is a MYTH and I'll be able to remember everything that article said with perfect clarity! 

I object to the researchers using the time between diagnosis and commencement of treatment as any kind of guideline for optimal brain function.  All of us here know that diagnosis turns our worlds on their collective heads and the stress is actually worse before treatments because we are contemplating a world of things unknown.  The anticipation of losing my hair was worse than the actual event.  Stress stress stress uses up the top three choices of how I felt during that time between dx and starting chemo.  And I know from when my marriage unravelled years ago that stress can trash your memory worse than chemo.  

Anyone who can think up a study alleging chemobrain is imaginary is not someone who has ever been through chemo.  How is this a good use of research dollars??  gimme a break

editing to add:  speaking of research dollars, I want my piece of the pie!  I contributed to that thread where we did our own research, and I still have medical bills to pay! 

hooptiedoo

As soon as I got my diagnosis, my mind went out the window. <g> However, I had calmed down considerably by the time I started chemo, and I know the effects were due to chemobrain.

BethNY

This was on the YSC web site: all about chemobrain!!!

Join this free, 4-week workshop for all who are affected by chemotherapy treatments. Led by facilitator Gabriela Hohn, PhD, Neuropsychologist & Cancer Survivor. Sessions are from 5:30 - 6:30 p.m. Participants will:

• Learn practical cognitive strategies & skills
• Regain control of memory & attention problems
• Lower stress during & after treatment

There will be a new topic each week:

• Mon 5/5/08: Memory
• Mon 5/12/08: Attention and concentration
• Mon 5/19/08: Organization
• Mon 5/26/08: Everyday thinking

Beth Isreal Cancer Center

Boo46

I am now 1 1/2 years post chemo and my cognative function is just now getting back to normal. Thank goodness I have an onc. who recognizes and discussed chemo brain with me. Was told 1-2 years post chemo till I improved and that is right on target for me. Unfortunately I'm still dealing with neuropathy which I also hoped would be temporary

Sue