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Aug 10, 2018 12:59PM
Hi Couragement, thanks for the info. You've been through a lot, and I hope you're doing well these days. It sounds like you are well-informed about your situation, which is great! The neuropathy aspect of chemo is very scary, and I don't think it's well understood by many in the medical community.
I was diagnosed with "polyneuropathy" without invasive testing or seeing a neurologist, although I'd like to see one. My neuropathy was unusual in the sense that I had pain like incessant beestings in my feet, lower legs, and hands. It felt like I was stepping on glass. Also, my motor nerves were affected - I literally couldn't walk normally for weeks. Fortunately that improved, although sometimes my foot will still just stop out of nowhere. The pain and hypersensitivity in my feet and hands has also improved, but it's still there. I wonder sometimes: it obviously affected my sensory nerves and my motor nerves, and the doctors said as much. So what about more subtle things, and my ANS? My gut has been "off" too.
Now I'm on Xeloda - which doesn't *usually* cause neuropathy, but I'm getting the hand and foot syndrome, which piled on top of the previous neuropathy is making me nervous. I don't want to have permanent damage, any more than I already do. I'm talking to my MO about it, so we'll see how it goes.
Initial diagnosis at 32 years old. Chest wall resection 18 months later due to skin metastasis, probably from needle seeding during initial biopsy. Skin graft from right thigh!
8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2-
10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel
11/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
5/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2-
11/1/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement
1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2-
5/1/2018 Lymph node removal: Right; Mastectomy
5/10/2018 External: Lymph nodes, Chest wall
7/1/2018 Zoladex (goserelin)
7/1/2018 Xeloda (capecitabine)
1/15/2019 Aromasin (exemestane)