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Old 11-07-2007, 11:09 AM   #1
michka
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Location: Paris, France
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Red face Starting Tykerb

I started Tykerb yesterday. I live in Paris, France. Tykerb is not available yet except through special trials for women with a metastasis.
My onc. thinks that Tykerb will be used like Herceptine within a year or two and got it for me since he thinks that it protects the brain better. Moreover, he thinks, like me, that the Taxol/Herceptine treatment half worked. So I will take Tykerb for a few months. If I can support it...
I started with 2 pills a day. I will go slowly to 5.
I AM SO THIRSTY. I was already drinking like a nut before, but now, even drinking doesn't seem to make me feel better. Did you have that problem? I also have some stomach aches. But so far, it is OK.
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 11-07-2007, 08:54 PM   #2
Vanessa
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My mouth is really dry and my lips have the taste of ink. I started out with 2 Tykerbs, then had to back up to one, due to being sick at my stomach. My doctor gave me a shot of aloxi to augment my zofran and phenergan. I have been really sick at my stomach. She told me to stop for 2 days and then start at one pill for a couple of days, then go up to 2 and so on.

I have been using Biotene toothpaste and mouthwash, but it is not helping much like it used to. Good luck. Brenda H has some really good tips for dealing with the side effects of Tykerb.
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