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Old 02-12-2015, 09:54 AM   #41
rhondalea
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Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
Re: Cognitive Rehabilitation

I googled "neurocognitive psychologist north carolina." I got two promising links:

http://www.carolinacns.com/index.html
http://www.ncneuropsych.com/

A neurologist is most likely to do an EEG and an MRI. He might give you a test called the CANS-MCI, or similar. It's useless for chemobrain. On the other hand, he might be a good neurologist who keeps up with the research in cognitive impairment following chemotherapy. I just wouldn't bet on it.

In my opinion, you'd be better off if you skip the neurologist and go straight to a neurocognitive psychologist for an evaluation. Both of these links offer that service. There might be others, but I picked the top two in the results.

The alternative is to find someone who can prescribe a stimulant. Provigil has worked for some women. Ritalin or Focalin or similar may also help.

I have more to post in this thread (on the subject, generally), but I struggled with the Qsymia until the topiramate put me back on the couch. Now I'm taking Adipex-p, which is phentermine-only. I've recovered, but I'm behind. I hope to post this weekend.

In the meantime, here's a book that I failed to mention earlier. It's excellent, and it might help you deal with a neurologist, if you see him first. It was written by a member of this site, Carol Devenir. It turns out that she knew all along that chemobrain is a brain injury like any other brain injury. (My neurologist did not get this very simple concept.)

For Kindle:

http://www.amazon.com/Beyond-Chemo-B...=carol+devenir

Print edition:

http://beyondchemobrain.com/ordering/
__________________

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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Old 02-12-2015, 11:50 AM   #42
Lnmum
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Location: Greenville, NC
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Re: Cognitive Rehabilitation

Rhonda,
Thanks! I am actually an SLP who has worked with patients having cognitive deficits due to Parkinson's, Strokes, and dementia (Alzheimer's, vascular, mixed, etc.).
I am better than I was in June 2014, but my processing speed is SLOW. I can not multitask. I am forgetful and I have word retrieval deficits. I have NO experience working with chemo patients. I participated in Lumosity with my patients having mild cognitive deficits. Now my scores are so low, it is depressing.
My doctor doesn't know anything about chemobrain. I seriously doubt the neurologist can help. He would probably do a MRI, and that's it. I don't know any SLPs in my area that work with chemo brain. I just want to get out of this mental fog!!!
Two more infusions of Herceptin to go. I really believe that is not helping my cognitive status.
I will contact the neuropsychs you found in your Google search. Hopefully, one is in network with my insurance company. Maybe they can make recommendations for medications, too.
Have a great day, Rhonda and all my HER2 sisters who are struggling with chemo brain!
Loren
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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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Old 02-12-2015, 12:58 PM   #43
rhondalea
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Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
Re: Cognitive Rehabilitation

Hi Loren,

My SLP knew nothing about chemobrain, but she was willing to give it the old college try. The other day, she tried something she'd never done before with a patient, and to her amazement, it worked. IOW, it's a growth opportunity for the right person.

I will be grateful to my neuropsych forever that she identified my need for speech.

Please don't do Lumosity. At least not for now. Your brain needs rest, and Lumosity is the exact opposite of rest. Meditation would be better. With that said, my neuropsych did recommend a couple of the games at our final session, although I can't remember why. I'll see if I can figure out for you which ones they are.

I don't think it's Herceptin. I'm dogged in my conviction that benzyl alcohol is the culprit. Ask if they can mix it with water instead. Their ability to do so will depend on whether they have other patients receiving Herceptin the same day.

Finally, don't be too focused on finding a neuropsych who has worked with chemobrain. You'll probably be the first. You just need someone who has experience with TBI. She has to be willing to adapt a bit, but the symptoms (except for physical damage) are the same.

If worst comes to worst, the neurologist should at least be able to give you the names of some neurocognitive psychologists if the links I posted don't pan out.

And please keep me posted about progress.
__________________

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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