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new to the site and just want to say hello

lynn12
Posts: 8
Joined: Nov 2006

hello to all, i am new to the website and so far what i have read is so wonderful. All your words of encouragement are great. I only with i would have known about this site when is was first diagnosed in feb of 2005. i am a stage 4 cancer survivor, have been in remission for 9 months now, in fact i dont even like to consider it remission, i like to consider myself cured. i do have one question though, i have been dealing with "chemo brain" i am very forgetful and can remember anything, it hinders my everyday life and work. Have any of you ever experienced this if so, is there anything that can help? i was told by my doctor that that is a side effect of the chemo and that there isnt much you can do about it. please i would love any sugestions. god bless you all and thanks
lynn

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Hi Lynn,

Yes, unfortunately this is a side effect of chemo. I deal with it by keeping my "to do list" always with me and also I invested in a Treo Palm cell phone which lets me keep my task list and calendar and my cell phone all in one.

It is very challenging and a lot of work, but it help with the embarressment of forgetfulness.

I hope this helps.

Kerry

taraHK
Posts: 1961
Joined: Aug 2003

Welcome to this site! I don't like the term remission either -- I prefer the term "cancer free". No evidence of disease (NED) is a favorite on this site. "Cured" sure sounds good too! Congratulations to you! I'm a fellow sufferer of chemo brain. My memory is terrible. But my memory was never very good, so it doesn't bother me too much. I cope by writing everything down. I have many, many lists -- and post-it notes stuck all over my desk and everywhere. Also, I am quite frank with everyone around me that I have a poor memory. I find people are amazingly nice about it -- probably since many of us are getting older anyway, and can sympathise! Best wishes.

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Lynn -

Welcome to the SemiColons! Sorry you had to meet us all here - but glad you're a part of the group now.

As far as chemo brain goes, it does NOT exist. Kerry is just a pretty blonde from Texas and that's her excuse when she acts like a pretty blonde from Texas.

OK... I'm lying (about chemo brain, not about Kerry being a pretty blonde from Texas). I am four years out of chemo and I still get chemo brain - or maybe I'm just forgetful and now have a convenient excuse. Kerry's suggestions are great, and Ido the same things.

Last month I was at a conference on survivorship put on by the National Cancer Institute - even the speakers who were MDs/survivors said it exists. The experts seem to be at a loss, however, for what causes it. I've heard everything from depression to chemical interruption of the synapses. Maybe someone will get a big NCI grant to do some research.

Most important thing is: it's real - so you're not alone! There are dozens of us with ... uh... what were we talking about?

Congrats on your NED-ness! Stay well.

- SpongeBob

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Sponger, (aka the Commander)

Blush, blush...... I went to a convention the other day and got my name tag. They told me that once a "blonde" remembers her name she can throw away her name tag!!!!

Is that chemo brain????

Kerry (I think that's right)

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

See, that's where I'm fortunate; I have to wear a nametag every day - and mine even tells me what company I work for. I believe the origins of that are similar to hotel room keys, you know; "If found [passed out in a gutter in the cheesy side of town] please stuff in any mailbox and Postal Service will return." - of course it may take 10-20 years...

;-)

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

I don't have any words of wisdom, I just wanted to welcome you to the site!
Congratulations on beating the "beast".
Mary

finner
Posts: 232
Joined: Jan 2005

Hello Lynn
Great to hear that you are cured ..Big congrats. Brilliant to hear stories like yours. Can't help with the forgetfulness thing, although I have it myself.

XXXX
Margo

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Lynn -

Welcome to our survivor's group. It is a great group. I too am a Stage 4 survivor and this site has been a Godsend.

"Chemo Brain" - definitely a chemo side effect and I doubt it is related to depression as I have seen suggested - seems to affect folks regardless of attitude. I find that while I can remember stuff I "used to know" and can also intellectually engage with material I am really interested in now, I have some trouble with trivia / material that really doesn't interest me. So, like others have said, I keep lists - if I have something trivial to do that I don't get to by the end of the work day, I leave myself a sticky note - otherwise I am likely to forget it the next day. I find it more difficult to study for exams due to concentration issues (part time student in addition to work), but I still manage A's. And, when something really interest me (e.g. a student asks me a question where I am not totally sure of the answer), I can still research as well as I ever could. But the trivia / remembering of relatively irrelevant events is definitely impaired. (Not to scare you, but someone recently posted an article here about how chemo brain can last for 10 years!)

Welcome, purchase some sticky notes and good luck with those lists.

Betsy

jams67's picture
jams67
Posts: 927
Joined: May 2006

Welcome to the site. I have heard that survivors of heart surgery and other major illnesses also suffer from the same problem. I know I have it, but I didn't have a great memory before. We have to work with what we have, which means more work, list making etc. I've also noticed that with neuropathy in my fingertips and the chemo brain (and being blond and from Texas) that the messages to my fingers from my brain don't always work correctly. I'm not kicking my foot instead of moving my fingers but I may type the wrong letters more often than before. Thank goodness I'm not using a typewriter.

lmk59
Posts: 6
Joined: Oct 2006

I find my "chemo brain" leaves me not being able to say the words I want. I'll be in the middle of a conversation and going to say something real profound and I my brain won't produce the words! Frustrating. Does anyone have any ideas on helping getting through the pain of neuropathy especially in the feet. I've actually resigned myself to use the electric carts at various stores because it's so painful to walk around a store. I've been taking vitamin B6 for about 2 weeks but haven't noticed any difference.

changing
Posts: 135
Joined: Oct 2006

Hi, my husband has complained about his feet and hands and started B6 about 2 weeks ago. Onc said that B6 would take a few weeks to before noting a difference. However, onc also decided to add calcium and magnesium IV before and after chemo as that too should help with the neuropathy....he got the first tx Friday and thus far believes it has helped. He's on leucovorin, Oxi and 5-fu with 46 hour bottle.Are you already taking this same protocol? Seems his onc was slow to add these to his tx as he's on his 5th tx. Hope this helps!

lmk59
Posts: 6
Joined: Oct 2006

Hi, I actually go onto this board by searching for anyone who has experienced neuropathy. I had breast cancer and the taxol part of my chemo affected by hands and feet. Serious pain actually after the chemo was done. Noticed it was happening about halfway through the taxol cycle but got worse about 2 months after I was done with chemo. I'll have to check about the magnesium and calcium. I'm concerned about all the drug interaction. I have to be on tamoxafin for the next 5 years and I know there are certain things you can't take while you are on that.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

lynn,
welcome, first of all, to the semi-colons!

As you have already read, 'chemo brain' is alive and well amongst a lot of us. Me, too! I read one article that said the effects of chemo can last for 10 years...hey, I am taking FULL advantage...don't want to go to an appointment, blame chemo brain...don't want to visit your wierd relative, skip it, blame chemo brain..hehehehe.

I guess the bottom line is that it is like any other disability, large or small, we all just find ways of coping and living within the constraints.

I make lists, myself...and try to tell as many people as possible that if I don't get back to them with something, please feel free to call me again...I have a forgetful brain!!!!

Hugs, Kathi

cherriann
Posts: 156
Joined: Mar 2006

YOU ARE NOT ALONE!! welcome to the site. i make lists but forget where they are. oh well like everyone says its a good excuse but yes its real. dont feel alone , a good sense of humor helps.
take care

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Hi Lynn,

As others have said, welcome to the semi-colons. Chemo brain definitely exists and is not related to depression. It may be a combination of things. The direct effect of the chemicals on the brain, as well as fatigue and the effect of the toxins of chemo on your body's chemistry. I am not too bothered with it except for remembering names but I never was real good at that. I do find it convenient to use however for an excuse. The other nite my wife and I were playing bridge and I made a stupid mistake but just said " it must be the chemo brain".

Dick

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