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Old 11-30-2014, 09:37 AM   #5
Debbie L.
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Join Date: Jul 2006
Posts: 463
Re: Questions about Anastrozole and Neuropathy (as separate issues)

Good questions, Lucy.

I don't remember the particulars of your cancer's ERPR status, but am assuming from what you say that it was low, but not totally negative? Where was the testing done? If there is ANY doubt about the reliability of the results (if it was done at a community hospital), I'd recommend sending it for a second opinion at a reputable (for example, Comprehensive Cancer Center) lab. I'll put my signature below with details, but I was browbeaten into taking Arimidex/anastrazole for 2 years for the low levels of ERPR that were reported by my community hospital. Like you, I had the filled prescription in my possession for quite awhile before I actually took the darn pill. My onc at the time said "it might give you a small edge, and you need every edge you can get". Then, eventually, I sent my slides/tumor block to Baylor where it tested totally negative (so I'd taken the Arimidex and experienced the side effects all for nothing). It's easy to get another opinion -- you can ask your surgeon or onc to do it for you, or you can do it yourself (contact the facility, get your samples from the lab, and send them yourself -- that's what I did).

As for the neuropathy, as others have said -- that varies so much that it's impossible to predict how it will play out for you individually. Many experience some neuropathy during treatment, and for some it resolves completely while for others it persists. There are drugs to help with it if it is an ongoing problem (neurontin and others in that class). Most of them seem to have the side effect of some sedation at first, but most people report that as their body adjusts, the sedation problem resolves.

The muscle weakness is a separate issue, I believe. Back in 2001 when I complained about it, I got blank looks. But I've seen a few bits of research since then -- when they look hard, they can see that there are changes in the muscles due to some chemos. For me, this problem slowly resolved, once I was done with chemo. I hope it's the same for you. I remember it being so bad that I felt like I could never really get any aerobic exercise -- because the muscles, especially thigh muscles, were so weak at times that I couldn't walk/hike fast enough to get my heart rate up.

I agree with you about the benefit of yoga. It helps on many fronts, but especially (for me), it helped with the aches from the AI.

Debbie Laxague
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3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
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