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10-31-2014, 09:05 AM
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#21
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: Cognitive Rehabilitation
Liz, making progress takes getting more of us off our posteriors, voicing our concerns together and alone, but voicing them firmly and openly, to be taken seriously. This thread is a very good start, but it is just a start. I'd like to see more people make the effort to get involved, even if only to protect the next generation. Maybe they don't care that much.
One that still amazes me is how silent so many have been in taking the bull by its horns and raising cain about the loss of sexuality with treatment, as if it was "just part of the deal". At present, the medical system is encouraging 5 women to undertake treatment that usually affects most of them in such an intimate way, in order for just 1 to obtain any benefit. It is important to note that those who work in the medical profession AND are breast cancer patients seem to suffer in silence as well.
One other process that I believe might provide helpful information would be to have hormonal testing and/or inflammation testing once a year as a standard for every annual physical exam, we might just discover patterns that occur for those who later develop cancer.
A.A.
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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10-31-2014, 09:43 AM
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#22
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Senior Member
Join Date: Feb 2014
Location: Minnesota
Posts: 184
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Re: Cognitive Rehabilitation
Thanks you Rhondalea for starting this post and AA for the prompt. This has been on my mind a lot lately and I have thought about posting or starting a thread and it felt like a lot of energy just to formulate all my thoughts.
I have definitely lost a lot of executive functions that are critical to doing my job effectively. I did some searching regarding chemo brain and found the Alzheimer’s meds being used, which Rhondalea you mention having used. I also found use for medications for ADHA have been shown to be helpful as well. Had a long discussion with my Onc about this, she is a BC survivor as well, and also experienced loss of executive function that was regained over a couple of years. For me we decided to tackle the issue of sleep, I have not had more than 6 hours of sleep per night, and sometimes less than 3 since starting Tamoxifen. So we decided to deal with the hot flashes to help improve sleep and see if that helps. I am taking Effexor and it is helping but still early to tell. Feeling in a bit of a fog today. Some days I feel able to focus and can accomplish a lot. Other days it is truly a struggle to complete any work.
On a very concerning note, which I think many of us worry about is how much is permanent how much can I regain, and what is the risk for continued loss. A friend had total brain fog from Tamoxifen, unable to converse and became deeply depressed, just wanted to sleep. The Tamoxifen was stopped and the brain fog cleared totally within a few days. She was switched to Raloxifene, and did OK. In addition to someone else who had chemo brain and is now in full blown dementia.
__________________
[SIGPIC]Lisa
Routine mammogram 12/20/2013
Call back with repeat films on12/31/2013 Ultrasound with core needle biopsy same day
Dx 1/2/2014 IDC ER/PR+
1/10/14 HER2 +
2/14/14 BRCA results negative
2/17/2014 skin & nipple sparing BMX with reconstruction Tissue expanders placed
IDC Stage 2A left breast. 9mm tumor no other CA 1/4 nodes positive
ER + PR + Her2 +(by FISH)
Right breast no cancer, sclerosing adenosis
3/13/14 Round 1 AC minimal side effects
3/27/14 Round 2 AC
4/10/14 Round 3 a little more nausea
4/24/14 round 4 hurray! Done with phase 1!
5/8/14 THP ( taxol weekly x12, Herceptin & perjeta every 3 weeks x 4)
7/24/14 done with chemo
Continue of Herceptin every 3 wks x 1 yr
5/14 start Tamoxifen x 5 years
8/18/14 removal of TEs silicone implants placed
9/14/14 Cellulitis Right Breast, suspect infected implant. Managed with Oral antibiotics, avoided surgery to remove implant. Whew!
12/17/14 nip & tuck revision of Left breast
We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face. The danger lies in refusing to face the fear, not in daring to come to grips with it. We must do that which we think we cannot do. -Eleanor Roosevelt
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10-31-2014, 11:14 AM
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#23
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Cognitive Rehabilitation
I have a post, but my head isn't fit for it. In the meantime, my neuropsychologist gave me a link today, and for the readers among us, it's a gift.
http://tbiguide.com/
I'll be back with more as soon as my headache goes away, although I do want to mention before I forget that everyone with brain issues should probably have their ferritin checked. The range at my lab is 15-150, but anything below 50 leaves you prey to such ills as depression, fogginess, and--my personal favorite--restless legs syndrome.
P.S. My own ferritin was 14 as of last Monday. In 2008, it was 8 (because of hypothyroidism). With treatment, it hit 34. In 2010, it was 22. During chemo, it was 37 (false rise from inflammation). At the time, I was so anemic, I had to have a flippin' transfusion, for cryin' out loud. You'd think it would have been a clue to someone, anyone. But with all (but one) of my doctors trying to push antidepressants on me, none thought to write a lab order for ferritin.
Jerks.
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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10-31-2014, 11:27 AM
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#24
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Cognitive Rehabilitation
Addendum:
I made a PDF of the TBI Survival Guide, and I put it in my Dropbox. If you would rather download it than read it online, and you don't have Microsoft Word, you can use this instead:
https://www.dropbox.com/s/5g97u6wd99...Guide.pdf?dl=0
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11-05-2014, 06:45 PM
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#25
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Cognitive Rehabilitation
Dropbox - great idea!
Will do when I have time, as now I spend huge amount with mother's issues and care.
__________________
"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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11-06-2014, 12:25 PM
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#26
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Cognitive Rehabilitation
Wow! I've been reading and getting so choked up - just to be validated is fantastic, so thanks very much for starting this thread.
I remember (18) years ago, feeling the chemo fog, and being told there is no such thing. Of course, now "chemo-brain" is recognized and being addressed.
My frustration is also in the executive function arena.
I am so visual at how I approach my work, and the ability to hold a vision while designing, and make changes in my mind and then physical changes to my design and then provide & coordinate the support documentation is pretty much out of the question without great cost/STRESS to me.
I avoid so many tasks that are simple and stupid - BUT - they are so taxing and I know without question that my brain is not functioning as it used to. AND NO, TO ALL MY LOVELY FRIENDS AND FAMILY, IT IS NOT "JUST" GETTING OLDER. *SIGH*
I cannot open my mail and process - it's too overwhelming, so thankfully I have help with all financials.
I cannot wrap a gift, make a card, take the whole thing to UPS and mail it. Too hard. Any time multi-layering is involved, I feel hopelessly overwhelmed and I just "can't". Which, as you know, is not the same as "won't".
I've been on continuous treatment for 7 plus years. I'm sure that has something to do with my brain fatigue, and my brain never recovering.
So, it's good to be validated.
Not sure there is a big "remedy" for me - except to continue to really pick and choose my battles, and consider finding ways to have less and less responsibilities that are taxing and time sucking.
Very great thread...thanks!
-SoCalGal
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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11-08-2014, 03:39 AM
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#27
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: Cognitive Rehabilitation
Rhondalea
I just wanted to say that I really miss Denise too. ![Frown](http://her2support.org/vbulletin/images/smilies/frown.gif) . I have struggled to post here also. Xxxxx
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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11-26-2014, 08:48 AM
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#28
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Cognitive Rehabilitation
Hi everyone,
I read all the posts as we went along, and I had lots of responses in my head, but they never made it to my fingers and thence, the keyboard. Let me just say that I hate knowing we're all in the same boat.
Here is my update:
For now, I am not receiving neurocognitive rehabilitation therapy. My therapist recommended speech therapy for the babbling, and I will start that soon. I will also enroll in a mindfulness meditation program run by one of her colleagues. There was something of a to-do over the latter, because my insurance company wanted to classify it under mental health, and the hospital wanted it classified under medical. Self-pay would have cost me $2600. At the local meditation center, the same program is $600. My therapist's colleague at the Center also has a private practice, and in that practice, she runs the same program for $240. I'm grateful.
But why, you ask, am I no longer having the rehab sessions? That requires a digression.
My endo decided that perhaps sleep issues were causing my fatigue, and he sent me for a sleep study. I have very mild obstructive apnea. The recommendation was to lose weight and to have my ferritin tested. The weight gain was caused by my inability to get off the couch and my failure to keep up with my food diary, as well as a lack of energy and desire to cook, such that I was eating randomly. Below range ferritin caused restless legs syndrome, which was uncomfortable in the evening while I was awake, but worse, kept me jerking around at night. All the apnea episodes occurred while my body movements were uncontrolled.
So, I started taking iron. One problem on the way to resolution. My skin problems have cleared up, my legs are less crazy, my sleep is better, my fatigue has decreased. My endo then decided that since I'm already on Metformin (well, maybe, if I didn't get the placebo, but he didn't want me to leave the study), he would prescribe Qsymia.
Let me break here to say that I had wanted to try a stimulant all along. From a genetic perspective, Provigil is useless to me. Neither can I take Ritalin. But my own research indicated that Focalin might help me. The trouble was that not one of my doctors was willing to prescribe it or anything like it, even though they were all eager to get me on an antidepressant. (Effexor would have worked, actually, but not at the dose that they would have prescribed.) This is utter bs, given that it falls within the NCCN guidelines for the treatment of chemobrain, but I won't waste more space complaining about doctors.
So, Qsymia. It's a combination of phentermine 3.75mg (increasing to 7.5mg) and topiramate 23mg (increasing to 46mg). The lower dose is for titration but I will ask my endo to let me go back to it because it was all I needed. I lost six pounds in the first two weeks, and within 24 hours of taking the first dose...
You should have seen my basement. You couldn't walk on the floor without stepping on something--mostly scattered, unfiled paper. Now the whole floor is clear. I again do my daily chores daily. The laundry is done. The bed is made. Clean is the word of the day. Organization proceeds apace.
The topiramate component is a problem. I have some side effects, and I don't like it. But all it took was 3.75 mg of phentermine to get me moving again. That's one-tenth the dose of an Adipex. I probably could have taken a child's dose of Focalin and gotten results.
My neuropsychologist had requested a predetermination from the insurance company for an additional 12 sessions. She put that on hold because she says I'll get no benefit from therapy right now. I just don't need it--the pill did it all. She also gave me a referral to a psychiatrist who is likely to prescribe a more appropriate stimulant to replace it. I have never taken a diet pill to lose weight, and I don't need one now, so I'll be happy to stop taking Qsymia. I just couldn't resist the idea of trying the phentermine for its effect on chemobrain.
A cautionary word here. I have tried other chemical cures. When no one would prescribe a stimulant, the endo prescribed Aricept. At first it seemed to help. I thought I had the miracle cure. After a month, I was just too addled to know it wasn't helping at all. It turns out that women who have had breast cancer chemo have higher than normal choline levels in our brains, so an acetylcholinesterase inhibitor is probably not beneficial. Oops.
Then the dreadful neurologist I saw gave me a prescription for Namenda (works well with Aricept). It caused terrible leg pain, and it did not help my mind even a little bit.
So I do not recommend either one to anyone. But Provigil is an option as are Ritalin and Focalin and several others, and they have been tried as treatments for chemobrain with varying success.
As for neurocognitive rehabilitation, most of the techniques I would have learned in therapy are contained in the book that I linked to in an earlier post. I have to say that it was very difficult for me because the idea of scheduling my time is not something I have ever done. (I'm excellent at scheduling other people's time, however.) You might even say that I'm constitutionally resistant to it, and now that I'm not working outside the home, it's even less palatable to me. Still, to build structure, it's a good idea to make a list of what you need to accomplish and to plan your activities through the week, along with breaks. It's a great tool, if you can make use of it. I just wasn't very good at it, and it's hard to say whether it's because I was distracted or because it just doesn't suit my personality very well.
So this hasn't worked out quite the way I planned. I'd hoped to give everyone a rundown on how this therapy works and what it accomplishes, but I took a shortcut.
The stimulant drugs do have side effects, but most of them are mild. If my experience is any indication, the dose required is very small. These doctors gave us deadly drugs and radiation in the hope of killing our cancers, so it's hard to fathom that they won't give us small doses of far less dangerous drugs to get our lives back. My neuropsychologist said something about that though. She was talking about neurosurgeons, but she said oncologists seem to be on the same page. "You're alive. You can walk. You can talk. Go out and live your life." They have the idea that "not dead" = "right as rain." And although it is true that not dead is better than the alternative, it's as if quality of life isn't even part of their calculus.
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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11-26-2014, 10:56 AM
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#29
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Cognitive Rehabilitation
That is quite a long post, and one of the best. It shares what each one of us goes through after cancer treatment.
I have been one of those who run opposite of others. So my experience with choline is opposite as well. I cannot tolerate Benadryl since cancer treatment - it puts me into symptom of anticholinergic syndrome which can be fatal.
I supplement with Soy Lecithin when my heart rate becomes elevated and my memory issues increase. I have other symptoms when I accidentally take something that affects choline. It is very distressing to me.
I still deal with issues of fatigue. Exercise helps quite a bit. But once you slip into that tired funk . . . well you can relate.
I have a huge pile of papers to file surrounding my filing cabinet in the living room. My office is piles of unfinished clutter. I have dozens of projects started . . . forgotten and unfinished.
So today I am baking a turkey for my family and am not even the least bit organized. I think I shall try your written schedule and see if I can get myself organized.
I think your post is very helpful.
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11-26-2014, 11:11 AM
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#30
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Cognitive Rehabilitation
I edited my post. Thanks for the nudge that made the light go on. Aricept is an acetylcholinesterase inhibitor not an anti-cholinesterase inhibitor. I still have these moments, and one of the side effects of topiramate is worsened memory. (I can handle that if I can function, but sometimes the results are weird.)
I can't tolerate benedryl, period. ![Smile](http://her2support.org/vbulletin/images/smilies/smile.gif) Ever.
But I think that it's possible to have higher levels of choline in the brain after chemo without having higher levels of choline in the body. That's been demonstrated with a lot of chemicals that act as neurotransmitters but are also present elsewhere, generally. As choline levels rise, serotonin levels fall. I believe there may be other consequences, but I don't have them to hand.
Exercise didn't help me at all. If I did manage to get myself up and active, it put me down for the count for at least a day or two or more afterward. It was terrible. Now, I'm able to take a daily walk again without a problem, so maybe I'll be able to go back to the gym soon.
The written schedule seems to be the tool of choice. She printed out daily pages from Outlook for me. I resisted because I have Outlook, and I'd rather do everything on the computer, but there's something to be said for a notebook that you can scribble in. You just have to be careful to allow yourself enough time and enough breaks.
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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11-26-2014, 06:00 PM
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#31
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Cognitive Rehabilitation
http://her2support.org/vbulletin/sho...ghlight=idelle
Walking (physical exercise - can be just walking around the house while doing chores. I would swing my arms and bend my knees every once a while to maximize the benefit), reading, and writing have helped me tremendously regain / maintain my cognitive ability.
The neuropsychologist who had administered the 17 batteries to test my cognitive ability pulled my husband aside and talked to him privately for a good half hour. From then on, hubby no longer wonders if I am doing certain things on purpose to upset him... He now understands the woman he's been living with for over 26 years not only is chronically ill, but also has a very injured brain that make her do strange things sometimes.
I think chemo brain is totally reversible (after several years with active, conscious efforts). My problem with the short-term memory region is due to the craniotomy and GKRS 24 and 13 years ago respectively. It was worse after chemo, but has been back to 'normal' (my standard of normal ![Smile](http://her2support.org/vbulletin/images/smilies/smile.gif) for several years now. O, and the easy-fatigue ability. That is not something that will go away no matter what I do - as I do have a huge empty space in the center of my brain.
Keep working on it. I remember the time when reading newspaper was a difficult 'task'. And now I'm online all day reading everything under the sun.
__________________
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
Last edited by Jackie07; 11-26-2014 at 06:09 PM..
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11-26-2014, 06:42 PM
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#32
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Cognitive Rehabilitation
You took a hard hit, Jackie, and it's amazing how well you've done. Cause for hope for everyone.
On the subject of husbands, I am lucky. My husband is the one of the strangest men you'll ever meet--a touch (okay, more than a touch) of Asperger's, remarkable intellect, bizarre sense of humor. He's been great about the whole thing--even the three times I flooded the house.
At one point, I gave handed him a concise, written explanation of the problem (a professionally written article), so he is well aware that I'm not doing it on purpose. It never occurred to me to take him to a doctor's appointment, but when I related to him the trouble I'd had with the neurologist, he said, "You should have let me talk to him." It was the first time I realized I could use him as an advocate if I need one. The next doctor who gives me trouble is in for it.
If moving around the house counts as activity, then I was more active than I thought. The doctors certainly didn't count it as such, but I went (and still go) up and down the stairs frequently, and if you think that cleaning eight litter boxes every day isn't work...well, except for the two double size ones, they're sifting pans, so there's a lot of lifting involved. And I suppose that hauling all those cans and bags of cat food might be akin to bursts of weight training. I don't use a cart in any store. I have handheld shopping baskets that I carry around, and when I can no longer lug them, it's time for the register. It just didn't feel like, yanno, exercise.
Reading was the real problem. I really pushed on that because reading and research is the end all and be all for me. The neuropsychologist said that all the effort I expended delayed the healing of my brain. She said that 15 minutes at a time might even be too much. I found myself reading the same things over and over and not comprehending any of it. If I read a freaking novel, I'd get to the end and start over again because I missed so much the first time through. Even then, I wasn't retaining more than a small percentage of the content. I never finished all the courses I'd signed up for. I stopped working on the family genealogy project. I stopped doing genetics research. It all just went down the tubes because I couldn't understand any of it.
Worse, I couldn't write at all--I'd come to this group and write entire posts, and when I'd review the draft, it would be utter nonsense. I did that a lot. I made tons of posts on Facebook, and no one noticed that they were all shares, and my own contribution was, at the most, one or two words. Familiar words that I've used all my life were suddenly foreign. I had to look up words that I've used hundreds, even thousands of times in the past. Sometimes, I knew exactly what word I needed, and it just wouldn't come to me.
So now I have a chemical helper, and it's great, but it's still a relief to hear that there is a light at the end of the tunnel from someone who got hit with a double whammy. Thank you.
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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12-13-2014, 06:15 AM
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#33
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Cognitive Rehabilitation
I'm reminded that I owe an update.
The Qsymia continues to work, although the normal dose progression did not work so well for me. I'm splitting the higher dose capsules so that I continue to take what is considered the titrating dose. I'm of two minds about telling the endo I did it, although I did tell my onocologist. I've also adjusted somewhat to the topirimate, although I'd like to not take it.
I've reached a certain level of function that I can't get past. The big projects aren't started, but I'm keeping up with the small stuff. So, okay, I'm not quite as adjusted to the topirimate as I said. It's as if it fights the stimulant every step of the way. Still, I'm doing much better than I was.
I am certain that the extra iron has helped. Certainly, it has cleared up my skin issues, and my RLS is nearly gone, so I know my ferritin must be increasing. That may be part of the reason my brain is less fogged. I encourage anyone who is having symptoms of fatigue and chemobrain to have their ferritin tested. (Admittedly, my oncologist is having a fit--he wants me to have an endoscopy. He claims that there is no connection between my thyroid issues and ferritin, even bearing in mind the severe anemia I experienced during chemo. He thinks something else is going on. But I just found an old paper (1985, but it has not been superseded as far as I can tell) that seems to say he's wrong, and neither my old gastroenterologist nor my former endo agree with him, anyway. Apparently, they read the old study, which he did not. But he is young, and they were not. Moreover, my dietary habits are such that I probably have very poor iron absorption from my food--too much coffee and tea, not enough meat, too much dairy.)
I've got a call into the neuropsychiatrist, but he's apparently a loose cannon, so I may have to wait a while. I'm thinking of looking for someone else, but I don't know where to start--which has been the problem all along.
I started speech therapy. The therapist is a treasure--young and infectiously enthusiastic. I'll post more on the progress with that after a few sessions. This should help not only in the area of a "cease babble," but in better organizing what's in my head.
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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01-07-2015, 07:33 PM
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#34
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Cognitive Rehabilitation
Today, an update, but it's really an assignment from my speech therapist. ![Smile](http://her2support.org/vbulletin/images/smilies/smile.gif) I am to tell you why I go to speech therapy, what I am doing in speech therapy, and how it is working for me.
Unfortunately for me, it comes in two parts. I'm to outline it, and then I'm to write it. I've never been able to outline, so I'll try a simple list.
1. Purpose of speech therapy (for me)
2. Overview of assignments so far
3. Accomplishments in real life
4. Continuing goals
I babble. I babble because I lose my train of thought. I babble because I can't find the right word, so I keep talking until it comes to me. I babble when I get angry, although that only happens in the doctor's office or in letters to the doctor, when I'm not being heard. I am not concise, and I am not able to get my point across because it's usually gone by the time I'm done talking.
In addition, my ability to process and comprehend information has slowed. I try to read and listen as quickly as before, but I lose large chunks of content, because my brain cannot keep up.
The assignments I've received so far have focused on training me to be concise in speech. I have managed to complete all but one of these assignments, but with great difficulty. In the past, synopsizing a series of commands would not have been a chore, but I labored over each example. Subsequently, I was totally stymied by the task of dictating a book synopsis.
When groping for a thought or a word, I have been told to slow down. This is, for me, counterintuitive, but it seems to work when I manage to do it. It's a technique that will require practice, because it's so unnatural for me.
On the up side, I'm learning to be conscious of the moments I lapse into editorializing. In conversation, I am watchful of my speech, and I cut myself off when I start to use semi-colons and parentheticals. I received a telephone call the other day that terminated far more quickly than usual because I stayed on topic and did not digress.
I have a lot of work to do. Understanding how to be concise, as I once was, and having the discipline to do it makes me breathless. I am also uncertain how the lag in information processing and comprehension can be addressed, although I suspect the answer lies in my own adjustment to a slower speed. I am hopeful, however, that the small accomplishments thus far are an indicator of improvements to come.
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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01-07-2015, 07:43 PM
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#35
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Cognitive Rehabilitation
P.S. I wrote that several days ago. Then I reviewed it with my therapist, Alyson, for conciseness. Then I forgot about it.
Since then, I have managed to synopsize a short story. It is an evil little story by a nasty little gnome (Harlan Ellison) and it has given me nightmares for nearly 40 years, but I found it easy to do.
In other news, the neuropsychologist called me today, and mindfulness meditation starts next week.
I still bumble and stumble, and I feel deficient, but at least there's some hope I'll be able to compensate somewhat.
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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01-07-2015, 09:22 PM
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#36
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: Cognitive Rehabilitation
I'm glad to hear you are working away at it, bit by bit, Rhondalea, and that you are learning to recognize progress and give yourself credit for it. The information from your efforts is interesting. I wish we knew why it happens more to some of us than to others.
A.A.
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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01-08-2015, 04:03 AM
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#37
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Cognitive Rehabilitation
Hi AA,
As you might have guessed, I'm very interested in why some of us are more impacted. I've done research about this topic, but true to form, I have not organized it.
The APOE4 (Alzheimer's) allele is a prime suspect--I'm heterozygous, fwiw--but even if it's a big piece of the puzzle, it's probably not the only one.
If I can get my brain in sufficiently in gear to organize my HDD, I'll post some links, but it might take a while.
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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01-08-2015, 01:19 PM
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#38
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Senior Member
Join Date: Oct 2014
Posts: 293
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Re: Cognitive Rehabilitation
Rhondalea let me add my thanks to you for starting this thread. Fortunately I have doctors who recognize chemobrain. Unfortunately they don't want to do any tests unless it hangs on for a while. In the meantime I've had to return to work somewhat impaired. The medical team at work is aware of the issue and has indicated they will go to bat for me, should there be "performance issue" talks about me but I didn't share that information with my boss because I met him for the first time when I returned to work last month. Can't you just hear that conversation? "Hi, I'm your new admin. I look forward to working with you. Oh, and by the way I'm having some cognitive issues due to my cancer treatment so you shouldn't get upset if I really munk up stuff I do for you, you know, assuming I remember you asked me to do it, k? Thanks. Great to meet you by the way."
I've taken a couple of notes from this though and will discuss with my PCP when I see her on Tuesday and then again with my oncologist when I see her next month. They may want to wait for a while before they do any cognitive testing but I had some bloodwork done recently and my B12 levels were very high (I do take a supplement and everyone thinks that's the culprit - myself included - but I'm letting all my doctors know because I'd rather follow up now and there be no issue than just make assumptions and let it go when there could be a problem that requires fast action.) and the oncologist's nurse sent me an email saying "Increased vitamin B12 levels can lead to several metabolic disorders that primarily affect cognitive functions leading to dementia." Makes me think that's a good reason to follow up sooner rather than later.
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01-08-2015, 07:34 PM
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#39
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Cognitive Rehabilitation
Lucy -
Interesting info about B-12 levels! I have been supplementing with B-6 for a back/leg nerve problem. Hope there is no such side effect from B-6.
As the conversation develops on this forum regarding cognitive impairment, the complexity of each individual stands out as clearly as the problems of how to treat what kind of tumor.
There just is no simple answer, and that is as "simple" as I can put it! Would be nice to have some kind of check list to go down while we look for and try to compensate for the aftereffects of our treatments.
__________________
"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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02-12-2015, 09:25 AM
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#40
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Senior Member
Join Date: Feb 2014
Location: Greenville, NC
Posts: 79
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Re: Cognitive Rehabilitation
A few months have passed, but chemo brain is stealing my ability to perform at work. My primary care physician recommended a neurological consult. He can't see me until 3/26! Rhondalea, you mentioned having a neuropscych eval. Any recommendations on finding a chemo brain specialist in NC? I live in Greenville, NC but can travel to Raleigh, Durham, Chapel Hill.
Thanks!
Loren
__________________
Loren
11/3/13 mammogram age 50
11/27/13 follow up mammogram and right breast ultrasound. Radiologist showed me image of 3mm nodule. He said to wait 6 months for a follow up mammogram. I advocated for myself and requested a biopsy.
12/11/13 core biopsy with clip placed
1/6/14 Duke consult BC Treatment
1/30/14 partial right mastectomy, sentinel node biopsy 2 setinal nodes clear. 1.1 cm IDC, close margins.
3/13/14 met Dr Heather White in Greenville, NC. She is wonderful and my new oncologist.
3/18-19/14 Dr. White ordered pet scans, full body ct, bilateral MRIs and BRCA TEST.
3/20/14 5/15/14 chemo taxol/Herceptin 1x/week
3/25/14 port placement
4/17/14 BRCA2+
5/22/14 Herceptin only 1x every 3 was for a year. incomplete Taxol(neuropathy of hands and feet)
7/2/14 oopherctomy, salpingoopherectomy, hysterectomy at Vidante with Dr. Marie Rowe.
10/3/14 BMX/trams flap with Georgaide and Zenn at Duke.
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