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Old 10-29-2008, 10:00 AM   #1
michka
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Location: Paris, France
Posts: 858
Red face Tykerb and Neuropathy?

I never heard about a link between Tykerb and Hand and Feet neuropathy but just checking. After all, we are the best panel.
I had mild hand and feet neuropathy during my treatment wth Taxol. It disappeared about 2 or 3 weeks after I stopped chemo in january 2007.
And all of a sudden, it came back! I took Tykerb from October 2007 until last week end. One year.
Neuropathy came back much worse than during chemo. And this although I am taking Neurontin for another problem. (Neuropathy in my arm after surgery).
Anyone experienced this?
(I am also taking Aromasin).
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 10-31-2008, 09:28 AM   #2
doh2pa
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Hi Michka,

I did have my neuropathy come back when I stopped taking my daily B6. Let me explain. I had moderate neuropathy with a few different agents and each time it seemed to be controlled with 50 mg of B6 and 5mg 3 times a day of glutamine. After I finished with the last neurtoxic agent (carbo) a few months back and my neuropathy got better I stopped taking the glutamine (it's hard to remember 3 times per day). (I have been on Tykerb this whole time but other things too). Then a few weeks ago I thought I would cut out the B6 and within days the neuropathy began to creep back. So I went back on the B6 and it is fine. This recurrence also coincides with the return of cooler weather to the northeast, so not sure if it's the Tykerb, cool weather or what. So if you haven't tried the daily 50 mg of B6, you might want to add that in and see if it helps. Yoga and accupuncture also helped.

Good luck, I know this is a very tough side effect to deal with.
__________________
Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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Old 11-01-2008, 05:50 AM   #3
michka
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Posts: 858
Post

Thanks Donna! I'll try B6....and it did get much colder in Paris this past week.
Michka
__________________
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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