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Old 04-30-2007, 03:48 PM   #1
Lani
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NY Times article on chemobrain

Chemotherapy Fog Is No Longer Ignored as Illusion [New York Times]
On an Internet chat room popular with breast cancer survivors, one thread — called "Where's My Remote?" — turns the mental fog known as chemo brain into a stand-up comedy act.
One woman reported finding five unopened gallons of milk in her refrigerator and having no memory of buying the first four. A second had to ask her husband which toothbrush belonged to her.

At a family celebration, one woman filled the water glasses with turkey gravy. Another could not remember how to carry over numbers when balancing the checkbook.

Once, women complaining of a constellation of symptoms after undergoing chemotherapy — including short-term memory loss, an inability to concentrate, difficulty retrieving words, trouble with multitasking and an overarching sense that they had lost their mental edge — were often sent home with a patronizing "There, there."

But attitudes are changing as a result of a flurry of research and new attention to the after-effects of life-saving treatment. There is now widespread acknowledgment that patients with cognitive symptoms are not imagining things, and a growing number of oncologists are rushing to offer remedies, including stimulants commonly used for attention-deficit disorder and acupuncture.

"Until recently, oncologists would discount it, trivialize it, make patients feel it was all in their heads," said Dr. Daniel Silverman, a cancer researcher at the University of California, Los Angeles, who studies the cognitive side effects of chemotherapy. "Now there's enough literature, even if it's controversial, that not mentioning it as a possibility is either ignorant or an evasion of professional duty."

That shift matters to patients.

"Chemo brain is part of the language now, and just to have it acknowledged makes a difference," said Anne Grant, 57, who owns a picture-framing business in New York City. Ms. Grant, who had high-dose chemotherapy and a bone marrow transplant in 1995, said she could not concentrate well enough to read, garbled her sentences and struggled with simple decisions like which socks to wear.

Virtually all cancer survivors who have had toxic treatments like chemotherapy experience short-term memory loss and difficulty concentrating during and shortly afterward, experts say. But a vast majority improve. About 15 percent, or roughly 360,000 of the nation's 2.4 million female breast cancer survivors, the group that has dominated research on cognitive side effects, remain distracted years later, according to some experts. And nobody knows what distinguishes this 15 percent.

Most oncologists agree that the culprits include very high doses of chemotherapy, like those in anticipation of a bone marrow transplant; the combination of chemotherapy and supplementary hormonal treatments, like tamoxifen or aromatase inhibitors that lower the amount of estrogen in women who have cancers fueled by female hormones; and early-onset cancer that catapults women in their 30s and 40s into menopause.

Other clues come from studies too small to be considered definitive. One such study found a gene linked to Alzheimer's disease in cancer survivors with cognitive deficits. Another, using PET scans, found unusual activity in the part of the brain that controls short-term recall.

The central puzzle of chemo brain is that many of the symptoms can occur for reasons other than chemotherapy.

Abrupt menopause, which often follows treatment, also leaves many women fuzzy-headed in a more extreme way than natural menopause, which unfolds slowly. Those cognitive issues are also features of depression and anxiety, which often accompany a cancer diagnosis. Similar effects are also caused by medications for nausea and pain.

Dr. Tim Ahles, one of the first American scientists to study cognitive side effects, acknowledges that studies have been too small and lacked adequate baseline data to isolate a cause.

"So many factors affect cognitive function, and the kinds of cognitive problems associated with cancer treatment can be caused by many other things than chemotherapy," said Dr. Ahles, the director of neurocognitive research at Memorial Sloan-Kettering Cancer Center in New York.

The new interest in chemo brain is, in effect, a testimony to enormous strides in the field. Patients who once would have died now live long enough to have cognitive side effects, just as survivors of childhood leukemia did many years ago, forcing new treatment protocols to avoid learning disabilities.
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Old 05-01-2007, 08:33 AM   #2
suzan w
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Wink

thank you Lani for this article...it is reassuring to know that I am not alone in my lingering "chemo-brain" symptoms. I was going to write and thank you yesterday, but I forgot...hehehe...
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age 54 at diagnosis
5/05 suspicious mammogram-left breast
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6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
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RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
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7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
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2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
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Old 05-01-2007, 05:29 PM   #3
dlaxague
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I'm glad that they are investigating the phenomenon of chemo-brain but I have misgivings about the studies that are focused on breast cancer survivors, because they do not appear to be weeding out those on AI's. The cognitive effects of AI's have not been well explored and it's my intuition (totally without evidence) that they may be the larger culprit - which would be a major confounder to any chemo-brain study involving us.

Debbie L.
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Old 05-02-2007, 07:50 AM   #4
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I most definitely have chemo brain (after only two rounds of taxol and carboplatin). I am very sure that chemo is the cause as I'm a writer (active immediately before and immediately after chemo) and I have terrible difficulties since chemo finding words. Also,I will start to say something and notice there's often a ten-twenty second pause for me to recall just what I was planning to say. Short term memory is also a problem and I missed the first dinner of my life recently. Still embarrassed about it. And I am not on any type of AI, as I am ER negative. Perhaps it's both!
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Old 05-04-2007, 12:15 AM   #5
Patricia
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chemo brain

Hi Grace,


You describe my symptoms exactly. I have been struggling to describe the delay in speech. It is particularly terrible at work. I used to have a pretty fast wit and ability to think and speak on my feet. We do a lot of debating at work and I definately notice the difference post treatment. I feel like a different person with more verbal limitations that before trying to do the same job. It is hard.

Debbie,
I too wonder about the AIs. I completed my AC/T in Mar 06 and completed Herceptin in 9/06 and I still am having real noticable (to me) problems. I have suspected the Aromasin. That makes it feel worse actually because then it means this could hang on for 4 more years. And the early menopause seems to potentially play a part too. I am very happy they are doing studies in this area.

Hugs,
Patricia
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A/C X 4 DD, 11 weekly Taxol + Herceptin, + 9 mos Herceptin Alone, 36x Rads, Lupron, Aromasin
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Aromasin & Estring plus Synthroid and supplements
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Old 05-04-2007, 09:09 AM   #6
Lani
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estrogen has many functions in the brain

As women are generally more verbally gifted than men (no, I did not make this up!) starving the brain of estrogen would likely have an effect on language.
I did read an article that women at a loss of words, nouns in particular, was less likely in those who ate more fresh fruits and vegetables (don't remember if study looked at patient age or menopausal status, but as the problem affects older women especially...) Will try to find it later

Anecdotally, a 70 year old woman I know who is exceedingly talkative is at a loss for several nouns a minute( eg. politicians, movie stars, street names both current and old ), but can quote numbers (stock prices--both current and ten years ago) easily.

Funny how the brain works!
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Old 05-04-2007, 12:30 PM   #7
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The Brain and DHA.

DHA is a long chain omega three found primarily in oily fish.

People can make it from the mother fat linolenic acid found in flax seed etc.

Women make more than men 8-9% and against 1-2% for men - but lots of things block the ability to make long chain fats including alcohol, mineral deficiency, some drugs, sugar, high omega six etc.

The brain is 60% fat on which a significant portion is DHA.

A deficit of DHA leads to mental decline.

As a safety net it is worth considering taking an omega three supplement which contains DHA and looking at balancing the omega threes and sixes as well as the ususal dietary consideration.

Smart Fats M Schmidt is about fats nutrition and the brain and is truly thought provoking.



RB
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Old 05-04-2007, 12:41 PM   #8
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My chemo brain seems to clear up quite a bit about a month after I finish a chemo regimine. I have been on Aromasin for about 2 years now, and it may contribute a little, never thought about it. I do have the occasional dementia-like search for a word, but better that than the alternative. I need to get back to my supplement/vitamin protocol... waiting to consult with my cancer specific nutritional doc since I have just started Ty/Xel... don't want to do anything that might interfere with chemo, as I want it to work as efficiently as possible.

But I think that the B complex and Omega 3's are probably pretty safe and a sage thing to do...

thanks for the info!
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

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Old 05-04-2007, 01:42 PM   #9
R.B.
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Please talk to your doctor about dietary changes. Omega threes can cause blood thinning.

There are quite a number of trials suggesting synergies of certain chemos and omega three - but again one for you doctor.

CoQ10 is also suggested as helping brain function.

But supplementation is no substitution for a nutrient dense (lots of greens etc) varied diet minimising processed foods sugar excess salt, limited fat, balances the omega threes and sixes.......I know easier said than done - me too - but taste buds do seem to change, and energy levels go up I think - I am still working on it !!!

RB
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Old 05-04-2007, 01:47 PM   #10
Andrea Barnett Budin
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Exclamation Taking Supplements

Unless otherwise specified (on an empty stomach) I take all my dozens of nutritional supplements (recommended my my oncological BC/nutritional expert) with a meal! Better absorbed and kinder to your tummy. Whatever you take, unless otherwise specified, at least a few crackers or nuts with it. ANDI
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