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02-24-2009, 08:48 PM
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#1
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Member
Join Date: Feb 2009
Posts: 7
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Chemo Brain
It has been a very long time since I have posted since I am 5 years out of treatment. What I should have been doing is letting all of you just starting this journey know is that I am proof that there is great hope!
At diagnosis I was stage 3 and strongly her2++++, and I made it through and so can all of you.
What I need help with now seems so mundane but is truly a problem in my life - chemo Brain - it won't go away and severely interferes with my work and life.
Why doesn't the medical profession help?
Janice
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02-24-2009, 09:19 PM
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#2
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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The drug Provigil has had some success in treating chemobrain.
Provigil News Release
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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02-24-2009, 09:51 PM
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#3
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Have you checked with your doctor and get a referral to the occupational therapy (and possibly physical therapy also) department? The OT people should be able to help.
My chemo brain was worse because I had had Gamma-knife for brain tumors (unrelated to) before breast cancer. And I worked at three different schools, yet still couldn't get my teaching contract renewed to complete my internship.
So now I am getting trained for another line of work - something that has low stimulant and not as stressful.
Havn't (finished the program)found it yet. But I am very hopeful.
Remember, it is a 'use it or lose it' situation. Stay on this board, it will help you to focus besides the good information exchanged here.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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02-25-2009, 07:20 AM
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#4
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Janice,
Congratulations on your milestone of 5 yrs.
How wonderful and you give much inspiration to many.
I was reading this article which I have linked for your review...
http://ihealthbulletin.com/blog/2008...mory-problems/
Best Wishes!
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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02-25-2009, 11:15 AM
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#5
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Member
Join Date: Feb 2009
Posts: 7
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Thank you all so much - hope and help always gets me through.
Joe - I have been trying to get that drug and my doctor wouldn't give it to me - so I am going to another doctor!
Janice
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03-01-2009, 05:46 PM
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#6
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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I am wondering if mine is chemobrain or tamoxifen side effects. I don't think I was having this much trouble while I was on Arimidex.
http://www.ncbi.nlm.nih.gov/pubmed/18923905
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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03-02-2009, 03:08 PM
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#7
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Senior Member
Join Date: Dec 2008
Location: Monterey County, CA
Posts: 37
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Janice,
You have my sympathy regarding the chemobrain. If you are interested in a nutritional-supplement approach to this problem, here is what I did and continue to do: fish oil 1200 mg caps, 5 per day; Coenzyme Q 10 200 mg per day; alpha lipoic acid 300 mg twice daily. All of these products are thought by naturopaths to help with brain health and they have other benefits as well. The ALA is an antioxidant and should be stopped for a few days before and after each chemo treatment. I will probably reduce the coQ10 to 50 mg and stop the ALA after a year. I take other supplements as well, but these are the most 'brain-specific'.
I certainly experienced chemo brain during my treatment it but only for several days during each cycle. Now, 4 months after finishing chemo, I feel my brain is completely back to normal. I realize you can't prove prevention, but these things are very safe and have other health benefits as well.
__________________
IDC 6 mm l.b. 3/08 age 49; ER <1%+; PR -; KI67 40%; HER2 +++by FISH; lumpectomy/snb 4/08; extensive dcis found at surgery (didn't show in bx or mammo); micromet in sn; MRI breasts and chest 4/08-NED; re-excision l.b. 5/08; refused axillary node dissection; no ca found in re-excision tissue. TCH q 3 wk x 6 finished 10/08; whole breast rad x 7 wk finished 12/08; refused axillary and supraclavicular rad. Herceptin thru 6/09. Refused tamoxifen & aromatase inhibitors.
1/13 so far so good:-) have vestibular hypofunction from chemo but its all good since now officially on borrowed time!
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03-02-2009, 03:55 PM
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#8
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Member
Join Date: Feb 2009
Posts: 7
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Rondo
Thank you for the info - I will try anything.
You certainly had a go round.
My best to a tough survivor
Janice
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03-05-2009, 06:51 PM
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#9
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Senior Member
Join Date: Sep 2007
Location: Near Chicago
Posts: 196
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This may or may not be helpful...my "chemo brain" [from Taxol or Herceptin or a combination of such] was bothersome enough that my oncologist sent me to a neurologist (oncology neurologist?) who referred me for Neuropsych Testing. There was impairment. Solutions were geared towards "symptom reduction" and included "Cognitive Remediation" [or something like that by Speech Therapists] and pharmacology. I think things are better now...but am still clumsy, forgetful, have trouble tracking conversations, other limitations that I don't generally share. The rehab was helpful in that it provided different ways of organizing things as well as ways to do cognitive exercises that increased stamina. Functionally I do pretty well. But it's definitely different than before. [Then again, what isn't different after being diagnosed with cancer?]
Melanie
__________________
Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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03-06-2009, 08:27 AM
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#10
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hi Janice! Congrats on the 5 years! I hope you find some relief for the chemo-brain. I seem to recall MJO, I think, made a post recently about sleep deprivation and chemo-brain. Just thought I'd throw that in if you are having any sleep-related issues. Good Luck!
__________________
For Nicola
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03-07-2009, 10:20 AM
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#11
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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I was just going to post when I read Bill's message. I was very concerned about cognitive trouble -- chemobrain. Saw a neurologist , tried Ritalin. Then I went off Femara for one month due to some liver trouble, started sleeping through the night and felt alert and sharp. Back on Femara, I'm not sleeping as well and I don't feel as sharp. So I've concluded a big part of my problem is sleep deprivation. I'm not giving up Femara, so I will have to adjust. THat's my experience only.
__________________
MJO
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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03-10-2009, 12:49 PM
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#12
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Hello Sweetie, cannot offer advice but wanted to thank you for all the inspiration. Keep on keeping on.>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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03-10-2009, 04:59 PM
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#13
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Member
Join Date: Feb 2009
Posts: 7
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Thank you all.
I am going to try Modafinil - got a new Dr. appointment.
Has anybody tried it.
Janice
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03-11-2009, 11:44 PM
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#14
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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yep..
I have been on modafinil which is the generic name that in the U.S. is sold as Provigil. It's the best! A non-stimulant that promotes attentiveness and alertness with virtually no side effects. I tried everything from Ritalin to Cylert - you name it - and Provigil worked the best with no side effects for me. I hope it works as well for you as it did for me! Good luck!
Donna
__________________
Donna in the Sierra Foothills of California
Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
Faslodex
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03-12-2009, 03:39 AM
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#15
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Member
Join Date: Feb 2009
Posts: 7
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Donna
Thank you!
I tried it yesterday - it was like the fog lifted.
Janice
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