Have any of you had cognitive issues longterm?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007

    Calico, I just wanted to say that when the gals give us research to read I print it.  I take it downstairs with me and I can refer to it later if need be.  Wink  I've got a stack of printed things.  I sometimes go through them and throw out what I don't need.

    Shirley

  • Sierra
    Sierra Member Posts: 1,638
    edited November 2007





    Re: driving..

    I can not afford a car

    and KNOW better than to drive

    on the roads these days
    people on their cells etc. eegads



    I live right in the city

    and those who have their full faculties

    are in accidents...



    re: ativan



    I was given this when first DX.

    but they would not let me have it

    for long

    Yes, it is different than clonazepam

    I can readily observe that



    however, I use clonazepam for my neuropathy

    the tingling in the arm and it greatly helps





    Re: Realtor.. and contracts..

    Oh, my goodness, you can not make mistakes

    there..

    same as when working in the legal profession

    no excuses.. :)))



    hmmm.. wonder if I can peel potatoes



    I am just kidding, but do have a friend

    now who does that job.. and she never

    took chemo..



    just needs a job :)


    Note: at the end of the day.. I never forget how blessed
    I am to be here







    S :)))

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    No Shirley, dear Dad isn't on dementia meds, so no worry. He's 86, and sad to say, I make him look sharp!



    Daylight driving ( won't go there on night time driving): "Navigating by the Sun". It's simple: sun comes up in the East, by noon it's Southeast, by three it's South and by six it's West.



    That's about the only way I can get myself around nowadays. Just look at the sun's location, and the time, and head where you need to go based on that. Can be twenty streets north of the street I need to intersect, but hay, who cares, at least I'm heading in the right direction. What difference are making squares, circles, triangles, loopty loops, just hang on....I'll eventually get you there.



    Yep, that's right, and if the gas tank light is on, well it's just one heck of a ride! So sit back, and enjoy!



    Crazy looney Tender's taking you for a ride!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007

    Tender, thanks for telling me your dad's not on one of THOSE meds! LOL

    Driving...besides having to think where you're going it's getting to the point one can't afford to drive too often.  And we have to use premium gas in our stupid car.  That means it costs about $56 to fill the stupid tank.  I think we need a different car...Hybrid?  LOL

  • Tine
    Tine Member Posts: 58
    edited November 2007

    Wow, I guess I am "normal" after all.

    I am not on Femara but on Tamoxifen and had a total hysterectomy 2 years ago.

    I did have chemo brain but found the fog lifted, but some things changed and have since worsened. 

    I have a heck of a time remembering people.

    I know I know them but never mind from where or their names.

    Sometimes they are good friends and there is nothing there.

    I have no concept of time anylonger.

    don't remember when bills arrived or whether I actually paid them. 

    Long term memory is shot to pieces.

    We went on holidays this summer and I hardly remember what we did :( If it wouldn't be for the pictures to proof we actually went away....

    I work at a  Greenhouse and I am some glad we have to wear name tags.

    It takes so much energy to remember everyone.

    Remove me for a few days and the names are gone.

    I work at our Coffee bar. And right now we are in the full swing of christmas.

    I was supposed to decorate an arch way with christmas lights.

    I grabbed a basket of lights went to the cap bar fridge. Opened it, placed my basket inside and turned away.

    When I looked back I couldn't figure out why in gods name the basket was in the fridge. 

    I just turned 40 this summer and find this memory loss so frustrating.

    I can handle the bone pain etc.

    But the memory and the wicked hot flashes together with not sleeping are just about doing me in.

    I still have another 2 years of Tamoxifen ahead of me and honestly don't know whether I can continue.

    I used to be a happy person and now, I am just miserable and moody. Tired and exhausted at all times.

    But... I am still here and that is a good thing. :)

    Sorry about the lenghty whining.

    But it is nice to read that there are others out there with similar problems. 

    christine 

  • raven81
    raven81 Member Posts: 142
    edited November 2007

    This thread is both funny and sad....

    I have major cognitive issues since treatment.

    I am now 46, had ovaries out after periods returned post chemo.  Started on Tamoxifen now on Aromasin for over 2 years.

    My husband used to tell people that I had a computer for a brain.  I remembered EVERYTHING.  What people were wearing at events years before, exact words used in old conversations.  I never wrote anything down--NEVER, didn't have to it was stored in my brain.

    Jump forward to post bc...... I was eating my cereal the other morning.  Couldn't figure out why I wasn't getting any milk, and not much cereal either.  After several minutes, I finally realized I was eating my cereal with a FORK!!!!  The scary part is it took several minutes for the light bulb to come on!

    I can't remember dates, phone numbers (not even my parents who I call everyday).  I too walk into rooms clueless as to what I was there for, so I start doing something else.  For the first time ever, I forgot something for my kids at school--I didn't give my little one money for the father's day boutique, so she wasn't allowed to shop.  She was devastated--I still feel bad about itCry

    These days, if I don't write it on the giant dry-earse board calendar I had to buy, it doesn't get done.

    I often find my 13 year old looking at me like I am nuts.  But I guess when your mother has asked you the same question 3 times in a 5 minute period, you might begin to thinks she is nuts!

    I could go on and on.  Just hope when the HT treatment ends, if they let us stop, that the fog will lift and my brain will work again!

    Hang in there and stay well,

    Eileen

  • chemo072
    chemo072 Member Posts: 682
    edited November 2007

    Eileen,

    With a fork? Laughing

    laughing with you, dear....ok, I know it's not supposed to be funny, it's no laughing matter in reality when it happens, but your post made me feel so much better! I'm not the only one :)

    Maybe your kids can learn to use the white board too, so that what they need doesn't fall off the memory plate?

    Hugs, 

  • saluki
    saluki Member Posts: 2,287
    edited November 2007

    Christine and Eileen---You are describing my life to a T..........

    Sometimes you just have to laugh and enjoy the perverse sense of humor you've acquired.

    Funny though---you think that some people are going to get it----close relatives, confidants or maybe your Doctor----but I've come to a realization they don't really!-----And its sooooooo frustrating.

    A few years ago I managed an incredibly busy private practice for family practitioners as well as doing all the billing for both the office and hospital.

    I was handling a job initially handled by a management group of 5 people---worked round the clock for years.  Had to cut back to just the billing---and then this year I had to give it up entirely----Just kept loosing time and focus---and income and the staffs paychecks were suffering.

    Yesterday, One of the Doctors asked me what I was doing with all my newly aquired spare time?   -----Whaaaaaaat?  For obvious reasons I thought at least he'd understand---I have no time----I loose crazy amounts of time trying trying to figure out what has come automatically for years.-------How can people you are interacting with daily be so clueless?------You cannot

    compare this with a Senior Moment. 

    I continue to be flabbergasted-----If I was functional and had all this time on my hands do you think I would choose to be penniless and spend every bit of what little I have on medication and healthcare?????

    This is downright humiliating, frustrating, and I only hope once I'm finally off these meds that enough of my functionality will come back to at least

    allow me to work part-time to make ends meet.

    Sorry about the rant---but bad enough to have to live with it but to realize that even the Doctors don't get it, ignore it , or not choose to put it at the top of the acknowledged SE's is an additional sock in the stomach.

    Which of us are getting the stupid pills----the Doctors or the patients? 

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008

    Here you go Saluki and ladies, maybe this will help our doctors remember....



    CORRESPONDENCE Cognitive Impairment, Aromatase Inhibitors, and Age



    Paolo Tralongo, Anna Di Mari Medical Oncology, G. Di Maria Hospital, Avola, Italy Francesco Ferrau'

    Medical Oncology, San Vincenzo Hospital, Taormina, Italy Journal of Clinical Oncology, Vol 23, No 18 (June 20), 2005: pp. 4243



    To the Editor:



    The recommendations published in the January issue of the Journal of Clinical Oncology1 regarding the use of aromatase inhibitors (AIs) confirm the advantages of using this drug in the adjuvant setting, and at the same time, underline the importance of monitoring the possible side effects, particularly for the subgroup of women for whom the risks and inconvenience of AI could outweigh the potential benefits.



    One of the most common side effects following AI therapy that can have repercussions on the patient's quality of life, is bone fracturing,2 which is attributed to the reduced level (systemic and local) of estrogen as determined by the treatment.3,4 In fact, this estrogen deficiency reduces bone mineral density and causes osteoporosis, bone fractures, hot flushes, and arthritic discomfort. It has also recently been reported to have an effect on cognitive status, and in particular, short and long-term memory, which is correlated with estrogen deficiency.5 Estrogen receptors (ERs), including ER-{alpha} and ER-ß, are located throughout the brain, especially in the areas involved in learning and memory, such as the hippocampus and amygdala.6 The enzymes necessary for sex steroid biosynthesis have been identified in these same areas, suggesting that estrogen has an important role in the brain.7 Estrogen therapy has been one of the most compelling potential strategies for the prevention of dementia. The results from different studies suggest that hormonal therapy exerts its protective effect when used in the very early phases of the disease process or even before the disease begins. At the same time, because mild cognitive impairment frequently progresses to dementia,8 preventative action becomes a relevant issue, especially for elderly patients. In fact, age itself, through the reduction of estrogen exposure and the presence of comorbidities, can promote cognitive impairment, which is strictly correlated with the loss of independence in elderly patients.



    The preliminary data on AI assumption suggests a possible impact on cognitive function: 94 women enrolled in the ATAC study and 35 healthy women were evaluated for cognitive function, after controlling for age and the use of hormone-replacement therapy. The women who received hormonal therapy manifested an impairment of verbal memory (P = .026) and task processing speed (P = .032).9 Preliminary results from the TEAM (tamoxifen versus examestane) trial indicated a significantly higher incidence of impaired word finding in women who were treated with examestane compared with tamoxifen.10



    To conclude, this evidence supports the hypothesis that cognitive impairment could also be a late side effect of adjuvant hormonal therapy. With this in mind, it is essential to obtain an indication as to the true incidence rates and entity of the therapy and in particular to evaluate the actual conditioning that is brought about in terms of a reduction of the patient's activity of daily living and of their independence.



    Therefore, we believe that the assessment of cognitive status should become a systematic component of drug and schedule (tamoxifen-AI) safety evaluation for prospective clinical trials employing AI and that, in the meantime, it is also important for physicians to consider this possibility, especially for elderly patients with initial memory impairment.



    Tender



    Dah....haven't got this Firefox, Safari interface down yet!

  • saluki
    saluki Member Posts: 2,287
    edited November 2007

    Thank you so much Tender---I am going to print this out and have it in hand to give to my Docs when I go to my appointments next month----Its doubly frustrating to me because

    some of my Doc's tend to blame the focusing problems on being part and parcel

    with RSD---and I can accept that part of it may be----but I'm convinced the bigger problem is the AI. 

    BBS---I'm holding off trying to get the Provigil right now because I'm leary that it may be toxic to my liver like the Strattera was---Damn things are extensively metabolized in the liver by way of  cytochrome P450 enzymes.

  • mrsb
    mrsb Member Posts: 140
    edited November 2007

    All of the above. forget why i went to the fridge, why I walked down the hall.search for my words then remember what i wanted to say the next day. First the Aromatase shuffle then the Aromatase forgetfullness. My life is made up of lists. and sticky notes

  • iodine
    iodine Member Posts: 4,289
    edited November 2007

    Didn't eat my cereal with a fork, but have several times put orange juice or iced tea from the fridge on it instead of milk.

    Yuck!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007

    I was dx 2.5 years ago, had a mastectomy and only one chemo treatment before I chose to quit.  I had a short time before I started taking Tamoxifen, so I don't know if my current "brain-less state" is the Tamoxifen or the chemo.  But I know it exists.  And I'm sick of people telling me "you're just getting old, I'm the same way".  Because I KNOW that this came on VERY fast and it's nothing like I've ever experienced before.  I TOTALLY relate to all the stories you're telling. I see and understand why they're "different" than normal aging cognitive issues. I'm a single Mom with a business and "Multi-task" was my middle name.  Now...gosh I can't even remember any of the comparable things that happen to me.  I have only one pill a day and also had to get the pill boxes by day.  Like one of you, I would set the bottle down and instantly not know if I'd taken it.  I have a terrible time with words.  Everyday words.  My brain just can't keep up.  And driving...ohmygosh...I get in the worst fog.  That might be a combination of the cognitive issues AND fatigue.  Which is unbearable too.  I can barely drive my child somewhere, and I normally have to wait/sleep in the car when I get there (contests, concerts, practices, shopping, anything).  I'll do those odd things like staring at the item in your hand and wondering how ever did it get there, and what were you going to do with it?  Put it away, use it on something, throw it away, clean it...and, when did it change from pink last week to blue now, huh!?  What?  I have NO focus and I HOPE it's not long term.  I've just been given permission for a vacation from my Tamoxifen and I'm HOPING to see a difference.  I don't hold out much hope...I only get a month.  But...we'll see. 

  • BlindedByScience
    BlindedByScience Member Posts: 314
    edited November 2007

    There are prescription medicines that might help. Aricept & Provigil are two of them. For those who would be interested in a non-prescription supplement, I've posted some text from Edge in the Alt Med section. I had asked his advice on behalf of someone else who was just starting chemo & he was kind enough to give a summary of his findings.

  • Isabella4
    Isabella4 Member Posts: 2,166
    edited November 2007

    I can so relate to what all of you are saying. I KNOW this must be AI related.

    I forget just about everything, so much so that I can't think of silly things that have happened to me lately.

    I just feel sooooo stupid, I am sure sick of people just about patting me on the head, and giving me 'there, there' looks. I went to town this afternoon to start a bit of Christmas shopping, one of my favorite stores had 25% off all day,and what did I do ?? I just plain forgot the store was running a promotion, and went in just about every store in town APART from the one I especially went to town for.

    I also dropped my purse in a busy store, spilling all my coins and credit cards all over the floor, and when I got back to my car I had a parking ticket !

    One thing I can do, which I notice a lot of you are saying is troublesome to you, is drive. I just love to drive, and when life gets a bitch I just slam into my car and vanish for two or three hours....just about the only thing I can still enjoy. ( Shirley.....I filled my car up today, it was almost on empty, and it cost me 68 pounds...sorry my pound sign has vanished....which will be about $120 I would think, so think yourself lucky!!!! Petrol is now one pound 10p a litre, I too have to use premium, so that is about $2 a litre, and 75% of that goes to our wonderful government in tax. ) 

     I have to go now, my DH had a tooth out today, and my God, you'd think he'd produced twins, he is SO worried about whether he can manage a drink or not!!!! If men had to have babies, and mastectomies!! Just wish all the problem I had was caused by having a tooth out.

    Isabella.

  • OLBinNJ
    OLBinNJ Member Posts: 236
    edited November 2007

    I can so relate to everything that has been said here.  I didn't find this board until many years after my dx and tx when I was looking for help for a friend.  When I started reading about chemo brain it was a new term to me, but I said to myself "that's me", but my chemo was many years in the past.  I was on Tamox for 5 years then Arimidex/Femara for another 5 years.  I go into a room to do or get something, and then can't remember what it was.  I was never great at math, but since chemo and other meds, I really stink at it.  Thank goodness my cell phone has a calculater!  I have put the milk in the cabinet and the cereal in the fridge.  Did I take my meds, or was that yesterday?  I tried all kinds of methods to remember, turning the pill bottle upside down when I took it, but then did I remember to turn it right side up later?  I have been off meds since May, and nothing has changed (at least not with the cognitive issues, the foot pain is much better).  It's a little consolation that it's not just me, and thank you for the laughs (not at anyone, but with everyone). 

  • joanne1234
    joanne1234 Member Posts: 1
    edited November 2007

    Hi, I'm new to this chat room just found it today because I was looking to find out if other cancer survivor's were having difficulty with memory loss. I was diagnosed 2 1/2 years ago - lumpectomy, chemo and radiation. Then was on Arimidex, but ended up with neuropothy in both hands, so my oncologist put me on Tamoxifen. I've been on it a little over a year.

    It's just that recently - the last few months, that I've had a horrible time with my memory. At work it seems worse, and like "whatnow" said - I can't remember simple words. It's very frightning and was beginning to think I'd developed Alzheimers.

    Anyway, I'm glad to know that others are facing the same problem. Maybe that will help with the anxiousness and then the memory loss won't be as bad.

  • flash
    flash Member Posts: 1,685
    edited November 2007

    chemo brain is real and they have now demonstrated that the brain changes are still found 5-6 years out. It's not anyone's imagination.

  • QueenSansaStark
    QueenSansaStark Member Posts: 207
    edited November 2007

    I've just finished chemo and rads and am now on Tamoxifen.

    I am Sleepy, Grumpy, and Dopey. As well as Hotflashy, Tubby, Bitchy, and Snorey. Those are the Seven Dwarves of Chemopause.

    I am trying to get a Master's Degree and I can definitely notice the difference in my brain capabilities! And I've never done so many dumb things in my life like locking my keys in the car, or DROPPING my purse at the train station and losing it because I didn't notice! Embarassed Luckily someone returned it to lost and found...

  • Sierra
    Sierra Member Posts: 1,638
    edited November 2007



    Hi Susie and all Sisters

    posting here:



    Chemofog.. apparently is the term for this

    now..



    Yes, I put my cereal in the kitty's dish

    GRRRRR... LOL

    she was so angry with me



    I will let you know when

    my interview is done

    no time at the moment

    but.. certainly we need tips



    I am always v. aware of

    my purse, credit cards

    and no longer carry what

    IS NOT NEEDED.. LEST IT BE STOLEN

    OR LOST...



    whatever,, this being holiday season



    Re: Old Age.. Yes, they like to say

    it is age.. that is sort of a catch all

    but, I am not getting any younger.. but this is fine



    Also, if I did not write down what I did the day prior

    I forget, or even movies, I see



    Anyone here rent movies x 2

    or get library books out x 2..

    already read the book!







    :



    best to all

  • ClaraIsabel
    ClaraIsabel Member Posts: 12
    edited December 2007

    I believe chemo can cause brain damage. I have had memory problems since then. I am also taking Aromasin. I did notice memory problems from Ambien plus anxiety. I think it is hard to figure out what drug causes what, but the compoundment of drugs can cause a lot of side effects. One being loss of memory. I hope somebody is collecting all this data and improves on treating people.

  • kiwikan
    kiwikan Member Posts: 75
    edited December 2007

    I haven't started hormonal treatment yet - AND am undecided.  I really don't like what I'm already experiencing during this whole journey, especially with the rads.  I'm not too excited to read about the memory issues that seem to be prevalent.  Thankfully, I didn't have to undergo chemo. I am in a constant state of fog none the less.  Best, Ruth 

  • ClaraIsabel
    ClaraIsabel Member Posts: 12
    edited December 2007

    I finished chemo 4 years ago and I still have cognitive problems. I also take Aromasin. I believe my cognitive problems are from chemo, I think its a mild form of brain damage but nobody wants to admit to it. One has to consider - chemo is a poison! There are new studies being done to get away from chemo because it also kills good cells. I still have fatigue and nerve pain and I am not sure what is from chemo and what is from Aromasin.

  • dash
    dash Member Posts: 766
    edited December 2007

    Well, I noticed some memory issues during and after chemo but it has all increased so much since Tamox came into my life 3 months ago. I am very forgetful--kept making appt for my son, writing it down, telling everyone about, planning my schedule so I can get there and then....poof!....totally slipping out of my head. Finally, they told me to call in the AM and they would just get us in immediately. That worked!

    I am very disorganized, having trouble concentrating and yes spelling problems and me always such an expert**head hanging with shame** 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2007

    I supposed I'm in just "one of those moods."  I don't find this to be funny RIGHT now.  In fact, I find it so damned sad.  And have tears in my eyes.

    I believe we all just want to be NORMAL!  What the hell is that?

    Shirley

  • saluki
    saluki Member Posts: 2,287
    edited December 2007

    Shirley, Got to tell you---I had the last straw a month ago. 

    I used to take Amitryptaline years ago, and it was wonderful for me, for pain relief, mood, insomnia----(So much better than Effexor even with side effects. and personally, I saw no difference between the side effects of effexor and those of Amitryptaline).----I was taking 50 mg twice a day--no problem.

    Now I'm 58 years old and since Effexor made me a sleeping, hot flashing (unusual, rare response, but it does happen),  bubble-head.  I was

    taking it for pain control of my RSD and Brachial Plexus Stretch.  So, the Doctor decided to try me on 10 mg of Amitryptaline for pain control and insomnia. 

    A very tiny dose----OMG  ---1:00 in the afternoon and I was still trying to drag myself out of bed.  ---And then by 4:00 I was exhausted out of my mind and needed a nap---forget about functioning completely. ---on 10 mg!!!!!!------and I had had previous success with 100mg.

    I don't know whether the assault by chemo has made me more sensitive or becoming a senior citizen or the Femara---or all three!!    But, what I have come to conclude is that it is easy to become over-medicated and what may have been appropriate for even a 40 year old may not be appropriate for a near 60 year old----This stuff has to be periodically re-evaluated! 

    So, I stopped the amitryptaline, I started taking the Femara every other day (It didn't hurt that I'd fallen into the M/C donut hole and couldn't afford the damn stuff).

    I started taking the SAM-e again but this time 600 mg instead of 1200 early in the day.

      I stopped the Acetyl L-Carnitine and ALA and the Phosphatidylserine because it probably was too much of a good thing and overkill and probably accounted for my earlier Side Effects.

    Anyway between the SAM-e and the Magnesium Citrate and Vitamin D3 I am seeing some really positive improvements.----I'm able to get up at 8 AM instead of 1 PM plus I'm seeing an improvement in my cognitive functioning and most positively I have some hours of functioning.

    This may sound like a small thing--but this illustrates where I'm coming from.

    Showers have been weird for me to say the least---I go in an supposedly clean myself--but I don't have any idea once I've left an area--whether I've cleaned it or not so I do it over and over and over---till I give up and say to heck with it------figure I'll try again tomorrow.

    Well, I can now go in and have a recollection of what body part I've cleaned--no small feat here!

    Things are looking up. 

    There are no easy answers here, but it would help to have a realistic appreciation by our Doctors of whats going on here and to properly address it in our treatment.

     

    Shirley I'll bet you dollars to donuts that your problems are being exacerbated by your medications. 

  • ADK
    ADK Member Posts: 2,259
    edited December 2007

    Hi Ladies,

    I just want to let you know that it isn't necessarily chemo & hormone treatment that causes this - I didn't do either and I have had the problem of walking into a room and not knowing why I was there, not being able to think of a word or someone's name, holding the medicine bottle in my hand and not knowing whether or not I took it and staring at the faucet in the shower and not knowing how to turn it on or off (that one was pretty scary).  I am 50 and I wouldn't expect this to be happening to me.  This actually started for me in my late 40's pre dx, so I can't even blame post traumatic stress disorder.  I think life has just gotten too fast and busy for our minds to keep up.  It is frustrating and sometimes overwhelming.

    Just my two cents worth.

  • saluki
    saluki Member Posts: 2,287
    edited December 2007

    Anne-Maybe not in your case.  Yes, I know a certain amount of this is natural with Peri-menopause and Menopause---but, for some of us it is out of all proportion.

    When, you go on an AI vacation and things improve---that's just proof of pudding.

    I had to discontinue many of my meds when my LFT's went up in multiples and alarmed my oncologist---I discontinued all my medications except for the BP ones---My LFT's went down to my normal.

    And wonder of wonder---I had my life back for a few months---Even was

    able to contemplate the thought of being able to work again.

    But of course, had to go back on some of them except but the most toxic and with that I went back to square one.  We are all different. 

  • ADK
    ADK Member Posts: 2,259
    edited December 2007

    I agree that if you take a vacation from a certain medication and things improve, then, yeah, you have proof that it's a contributing factor. 

    I am frustrated that I have no reason for being such a scatter brain sometimes.  It embarasses me that many of my friends & DH fill in words for me.  Scares me some, too.

  • EstherRenee
    EstherRenee Member Posts: 3
    edited December 2015

    I am 8 yrs out from last chemo tx. No Tamoxifen or other HT meds. I couldn't tolerate side effects. Chemo left my brain like runny scrambled eggs. Unable to hold on to thoughts or tasks to see them through. I lost my med ins right after my last tx. That's when I knew I was in trouble. I thought the confusion would go away. Still going strong.

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