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Old 04-17-2008, 07:20 AM   #1
MJo
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Cognitive - Is anyone experiencing this

I finished chemo in May 2006 and Herceptin in November 2006, so I'm two years past chemo and 1 1/2 years past Herceptin. I write for a living -- business writing, grant proposals, reports, etc. I don't write as fast or think as fast as I used to. I don't focus/concentrate as well either. I used to be a "turn-around" writer, able to get a document out fast. That's very hard for me today. I suspect it's a side effect of chemo; however, I've also changed my attitude about work in general. Life is too important to stress myself. Has anyone experienced this? I am going to discuss it with my oncologist. I actually wonder if I should try Ritalin. I am not performing on the job the way I used to. My boss is supportive, but I m worried. Wondering if i should switch to something that doesn't require writing. I'm only 57 and used to love my work enough that I never wanted to retire. I feel differently now and would stop if I could (but I can't). Don't know if I have cognitive damage or if it's my new philosophy or both.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 04-17-2008, 09:00 AM   #2
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There is currently research on cognitive failure (Chemobrain)

http://www.medscape.com/viewarticle/557676

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Old 04-17-2008, 09:14 AM   #3
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MJo, I know I as well have problems with this. I have used sticky notes but now I find I have to use them almost daily to remember things, because if I don't write it down, I won't remember.

I also find that things I used to do, I now find myself thinking how did I do that task before. I forget things very quickly.
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Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
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Old 04-17-2008, 01:06 PM   #4
dlaxague
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MJo,

There has definitely been a change for me also. Friends try to tell me that it's not the breast cancer treatment, it's the aging, as they claim that they all are having similar issues (we are mostly in our 50's).

As far as cause, I suspect the AI (arimidex) that I took for two years. I think that it may be as big or bigger a culprit than the chemo. It bothers me that those researchers now (finally) paying attention to chemobrain do not seem to be taking AI use into consideration as a confounder. And also that very few of the AI studies are assessing for cognitive changes.

What I notice is not that I think more slowly, nor that I have a problem with learning (which is odd because wouldn't you think that would correlate with short term memory loss?), nor that my logic/thinking functions are worse in any way. As far as how "smart" I am (definitely a debatable topic), I don't perceive a change.

The change as I perceive it has been mostly to short term memory and specifically it impacts my ability to multi-task. It amazes me that I can do such stupid things sometimes, and yet still I seem to function okay at my job, which can be an intense job (labor and delivery RN). I don't know if it's that I've been doing this work for so long that there's some autopilot function that helps me compensate? Or maybe the urgency and importance of my function at work helps me focus somehow? And then there's the physical stamina ... another issue.

I'm 7 years out from diagnosis. It was not until this year that I gave up trying to appear normal. I would hem and haw while waiting/praying for the memory to surface rather than say "NO, I have no memory/clue about that". It has been somewhat of a relief to decide to be open about the issue. If I don't remember or if I forgot to do something, I now say so. I don't apologize for my malfunction although of course if it's caused a problem I apologize for that. I just state the facts. "I forgot". I still hate it that I do forget, but it feels better not to be ashamed about it.

That was a lot of rambling to say not much except I hear you and I send my sympathy/empathy.

Love,
Debbie Laxague
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4/01 ~ Bilateral mastectomies (LMRM, R simple) - 1.2cm IDC was found at pathology.
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TX: Control of arm of NSABP B-31's adjuvant Herceptin trial (no Herceptin): A/C x 4 and Taxol x 4 q3weeks, then rads. Arimidex for two years, stopped after second patholgy opinion.
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Old 04-17-2008, 01:17 PM   #5
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That's interesting. I am on an AI only....no chemo, no Herceptin. I have noticed that I don't focus, and my memory sort of "shorts out" sometimes. I, too, have been told it's my age. Maybe my age is contributing SOME, but I don't think all.

Thanks, Femara!

Jennifer
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IDC 0.2 mm
DCIS 0.3 mm
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Old 04-17-2008, 02:54 PM   #6
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Smile

I have this problem and I attribute it to aging
and very low estrogen.
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
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Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
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Old 04-17-2008, 04:55 PM   #7
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Another thought

I am 2 years past chemo. I work at a University and a large part of my work is writing. Before diagnosis, like you I never wanted to retire...then I experienced exactly what you have...had the same thoughts, probably from chemo etc. Talking to my regular doctor, he suggested I might have depression...I started on a low dose antidepressant and it was a miracle. I could think, I could concentrate, I could work! I didn't feel depressed and I would have never thought that was the problem...but it worked for me.

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Old 04-17-2008, 06:14 PM   #8
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I use sticky notes and then forget the sticky notes! And spelling, I can't believe some of the words I cannot spell. It's been almost 2 years since i finished herceptin.
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Old 04-17-2008, 06:25 PM   #9
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I agree. I think maybe we suffer from a sort of Post Traumatic Stress Syndrome. As someone who has experienced several recurrences I find it gets worsw. At present, I am trying to deal with Social Security and need to be on the ball about what I have earnt and when. Very difficult when you have chemo brain.
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NED 26 mths. Recurrence early Mar07. Taxol added to Herceptin. NED. Will have total of 6 cycles, then Aromisan and Herceptin. Early Oct 07, recurrence to the pesky right upper lobe, with some pleural thickening upper rt hemithorax. T/X now the treatment. May 2008, Taxatere and Herceptin for lung recurrence
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Old 04-17-2008, 06:43 PM   #10
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Hi Mary Jo,

I forget a lot too, but I think it's age related. It doesn't seem to be so bad that I think it's damage from chemo.

I always have a lot of post-it notes.

Sometimes I think that having a lot on our plates causes stress which can interfere with our concentration and promote forgetfulness.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 04-18-2008, 09:18 AM   #11
MJo
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THank you all. I never thought about the Arimidex, even though I take the little pill every night. Especially since Jennifer is noticing these symtoms on AI only. Interesting comment about the antidepressant, because I had to cut my dose down -- w/ doctor's approval. It made me sleepy, especially when I lost a lot of the treatment weight. I feel comforted by these comments and will go easier on myself. Regards to all
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 04-18-2008, 05:53 PM   #12
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I have always thought the "finding the right word" syndrome was low estrogen. Even the hormone negative women get chemopause and us hormone positive women might get it worse because of AIs. I knew it was that as I am well done with Herceptin but sometimes forget how to spell the word "was" (this happened recently). But, overall, my memory is good. My motivation for work is good. Perhaps the work I do is becoming less than inspiring but...
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Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
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Old 04-18-2008, 06:19 PM   #13
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Hello Ladies, I'm sorry to chime in here, but I had to. For what it's worth, I've never had chemo., and I've always been complimented on my excellent memory. I don't have a photographic memory, about 90%, and throughout my life, was always the source for spelling and definitions of words, but within the last six months, I find myself hesitating, sometimes not able to find the right word I want to say, and sometimes the person I'm speaking with will provide the word, and I'll say, "yeah, that's it" and it will be some really common word. I guess what I'm saying is that "our" memory and recall problems may be fundamentally related to stress. Chemotherapy causes stress, and I gotta feeling I've always had low estrogen. Just thought I'd put in my two cents worth.
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Old 04-18-2008, 08:23 PM   #14
Mary Jo
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Time for my 2 cents worth.....................although I don't seem to have any real memory problems (however me and post it notes are real close friends ) my attitude toward's work and it's meaning to me have changed.

I always loved my job and still do HOWEVER I've found since breast cancer entered my life I am way busier with other things and sometimes work seems to "get in the way" of what I'd like to be doing. I think it's about finding what's really important in life. You agree?

That being said, I will say, my kitchen at work has become somewhat of a "conference" room and different staff members will come in all the time to talk - to ask me to pray - to ask about someone they know who was dx with breast cancer and many other things. So, it feels like my purpose somewhat also.

That's my 2 cents for what it's worth..........probably only like 2 cents.

Love you guys,

Mary Jo
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
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Old 04-21-2008, 09:42 AM   #15
MJo
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THanks MareJo. I was telling my co-worker that all I want to do is run through a field of flowers. That's what I want for my life. That is my ambition since breast cancer. I am no longer afraid of the word "unproductive." I want to watch seeds pop through the garden soil.

I am writing this on my lunch hour.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 04-22-2008, 12:38 PM   #16
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Question Duh, what was I doing??

Good topic and I know it has been discussed earlier in these pages.

Have any of you tried any of the "memory enhancement" supplements?
My cancer is hormone neg and I was already post meno at dx, and seemed to be coping ok with memory till my diagnosis.

After having TWO long rounds of hard chemo in successive years, I really noticed my ability to carry on with things drop after the second go round. The "Zombie syndrome" was more apparent and a lot less got done.
I did get a short course of Ritalin from my med onc during my radiation as my ability to focus and finish a task was very scattered then.

After all the drugs for mets I began taking Lions Mane Mushroom capsules and did notice an improvement.
Then I found another one called "Neurozyme" by New Chapter. For "Supercritical Mental Clarity." It does have Ginko along with many other good things.
One thing I like about it is that it "reduces cortisol," a stress hormone that makes us hold the spare tire fat.

Last year I had to keep a lot of new and technical information on my Dad's medical condition in my head to explain to far off family members. Two years prior I could not have done that!

P.S. Since my Gamma knife and other work on my head for the brain mets, I also felt the need to somehow add something to the CoQ 10 for my brain health.
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Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 04-23-2008, 07:08 AM   #17
MJo
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Steph - Thank you for reminding me about natural supplements. It came at the right time. After complaining last week to this board and some other survivors I know, I decided I must accept my (hopefully temporary) cognitive problems and try to accommodate them. I plan to ask my boss if I can move to an office in a less busy location so I have fewer distractions. Thanks to your reminder, I will also visit my health food store this weekend to look at some supplements. I have to be careful that none of them raise estrogen levels, since I'm ER/PR pos.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 04-23-2008, 11:20 AM   #18
StephN
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Wink

Happy supplement shopping MJO.
Recognizing and accepting these memory problems allows us to go to the NEXT step and try to make it better.

It is scary at first when we realize how impaired we are feeling, and many of us try to hide the condition. When work product or home making suffers, others are going to notice.

As Debbie says, better to be open about the issue. It goes with the territory called BC, as well as the dropping hormone levels and general slowing down with age.

I had to thank my hubby this morning for reminding me of something, when it is usually Me reminding HIM!
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 04-23-2008, 04:11 PM   #19
Soccermom
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Mjo,
an Onc I saw I Florida back in 2005 (when I was evacuated for Katrina), prescribed Provigil for me. I felt that it gave me little more focus, but was afraid of the risk of raising my bp, so I quit taking it...Just a thought,,,
Marcia
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Old 04-23-2008, 07:53 PM   #20
AlaskaAngel
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memory deficits

Hi mjo,

I was the spelling bee champ prior to chemo, but at 7 years out the spellings come and go when I least expect it -- so those people in my life who knew I could spell almost anything have almost as hard a time with it as I do when I freeze up and stumble over spelling off the cuff -- and even just remembering which word it is I am trying to say.

I've had several different occupations over the years so making changes was just one more for me.

I think it is caused both by stress and by loss of estrogen. I don't take an AI, but tamoxifen was similar for me. And I do think the low levels of our CBC's during chemo reduce the total volume of oxygen available to the brain during some periods of treatment, perhaps even because the CBC's themselves may be less mature or less of them may be mature enough to carry a full load.... (leaving us missing a few cards from the deck).

I thought about what DLaxague said about being able to continue on autopilot after years of doing the work, and there is some truth in that too, but I have also found that even when doing the most routine tasks I can suddenly realize that I don't know what step is next, and that IS frightening.

The last visit I had with my PCP I was describing the issue of testosterone and completely lost the word I needed to explain (which was "converting" to estrogen). Since he is a good doctor he observed the deficit and waited rather than supplying the word for me and there was quite a pause while I struggled, before he suggested it. But I know he was aware of the problem.

You are not alone in experiencing these things.

AlaskaAngel
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