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Old 10-14-2013, 08:38 PM   #7
rhondalea
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Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
Re: lingering side effects after finishing herceptin

All the typical side-effects passed very quickly for me--four months out, they were gone.

The lingering side-effect seems to be related more to the benzyl alcohol used to mix the herceptin. I had mild-to-moderate brain effects from surgical anesthesia and chemo, but the severe brain damage began with Herceptin and got worse with each infusion. After I was done, the symptoms continued to worsen, until I was virtually non-functional. Benzyl alcohol has a documented deleterious effect on cholingeric receptors, and apparently some of us are extra susceptible.

http://www.ncbi.nlm.nih.gov/pubmed/1725728

My endo prescribed Aricept (donepezil) which is a cholinesterase inhibitor used to treat Alzheimer's dementia. It has gone a long way toward healing my brain (except I had a TDaP booster a couple of weeks ago, and one of the "inert" ingredients has a similar effect which has wonked me hard, albeit, not so hard as the benzyl alcohol).
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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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