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Old 10-31-2013, 04:26 PM   #25
rhondalea
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Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
Re: NEDenise Downer Alert!

Okay, this sucks. Totally sucks.

Please ask if they're mixing your Avastin with benzyl alcohol. If they are, tell them to stop. (And even if they're not, the benzyl alcohol in Herceptin has a late cumulative effect--with each infusion, I got worse, but several months after I stopped receiving infusions I had a downhill slide into really, really bad).

I had every single one of the symptoms you're describing except for the shaking arms (although I did experience something similar--mostly in my shoulders--albeit intermittently). For some of us, benzyl alcohol is the devil. It has a bad effect on acetylcholine, which leads to a whole host of bad news. See here:

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

I couldn't find a list of everything that acetylcholine does, but I did find a list of what anticholingerics (acetylcholine blockers) can do, and you'll find your symptoms in the list here:

http://en.wikipedia.org/wiki/Anticho...ergic_Syndrome

I also have a list of brain effects from the lack of acetylcholine:

"Acetylcholine is the learning and memory neurotransmitter. Symptoms of poor acetylcholine activity include:
• Loss of visual and photographic memory
• Loss of verbal memory
• Memory lapses
• Impaired creativity
• Diminished comprehension
• Difficulty calculating numbers
• Difficulty recognizing objects and faces
• Slowness of mental responsiveness
• Difficulty with directions and spatial orientation"

You already know that my onc and other doctors did nothing, so my endo gave me Aricept (donepezil--and trust me, you want the generic because a 90 day supply of the brand costs about $1,000), and it worked a small miracle for me. What has improved things over and above that is daily lecithin--about 15-30 grams, split into 3 doses (5-10 grams/dose). I was taking it all at once, but I discovered that splitting offered better performance. I started taking brewer's yeast at the same time--it also contains choline along with a bunch of other good things (but not Twinlab--either Bluebonnet or Solgar is best). If you can't get them to prescribe a trial of Aricept, at least try the supplements. Acetyl-l-carnitine will also help, as will citicoline or alpha gpc, but not as much as lecithin.

Your adrenals probably aren't helping the situation any, but be aware that acetylcholine has a role there too.

I hate to see this happen to you, and I demand that you get better. I insist. It's ridiculous that your doctors aren't turning the world on its axis to find a solution, because if anyone deserves a fix, it's 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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