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Old 07-07-2007, 12:29 PM   #1
michka
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Location: Paris, France
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Unhappy Neuropathy Pain after Mastectomy

I was operated 5,5 months ago. (mastectomy and axillary nodes removed). After three weeks, I had severe nerve pain under my arm. The surgeon gave me a medication you give to epileptic patients. (Rivotril in France, molecule called Clonazepan)
3 months later, as it was only giving me temporary relief, he sent me to a specialized "pain" center. They gave me another product of the same type (Neurontin, molecule called Gabapentine) and I started mild electricity putting electrodes on my arm and chest 4 hours a day. The result is worse.
Did anyone who had this kind of pain after surgery ever get rid of it?
It is just an additional pain to the rest but I can tell the difference between nerve pain and my other pains.
But the worse pain is in my head: the surgeon said I could not have reconstruction until this pain disappears. But what if it never disappears?
Please tell me about your experience if you have or had this problem.
What treatment did you get and did it work?
Thanks.
Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 07-08-2007, 11:35 PM   #2
Catherine
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Posts: 715
Michka,

I had a bilateral mastectomy. But I did not have neropathy on my chest, or the nerve pain that you describe. I do not know much about this. Did the doctors "cut" something? I also had 14 axillary nodes removed under my right arm.

Surgery Sept 06, Finished with radiation Dec 7, 2006. Then in February 2007 I started physical therapy. The PT massaged my scars and worked the facia. My whole chest was tight, but the PT helped get my skin to "move" again. I am doing quite well now.

Please keep asking your doctors for answers. Some of the pain meds you mentioned just mask the problem. Yes, you want to be comfortable and free of pain. Can they tell you what causes the pain? I wish someone with your experience would answer your post. Maybe post the same question on the Komen site.

Keep asking your doctors for an answer. I sure hope it gets better.

All the best, Catherine
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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