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Old 09-14-2007, 05:37 PM   #1
sally
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3 weeks on tykerb

I just thought I would touch base with my new treatment which is tykerb/xeloda. I've been tolerating it well. I have been a little sick to my stomache. I just started compazine for that. It seems to be working. I haven't had a rash . I did have a headache for the first week. Do you get more side effects the longer you are on these drugs? Or do you get used to it and tolerate it better as you go. I'm sure everyone is different but would love to hear what you have to say. Does anyone take the tykerb with anything but water? I have a hard time drinking water so it's hard to get all those pills down with something I hate to drink. I know it has to be on any empty stomache so I am assuming nothing but water. Thanks for any replies . Sally
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Old 09-14-2007, 07:42 PM   #2
Lolly
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Sally, do you like herbal tea? A nice cup of warm tea would maybe help in swallowing those rather large pills!

I found that the stomache issues would come and go when I was on Tykerb/Abraxane, and don't know if it was the T or A causing the intermittent nausea. Don't let yourself go too long between meals, have a snack mid-morning and mid-afternoon. That seemed to help me.
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 08-15-2008, 06:49 PM   #3
Mary Jeanne Phillips
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Hi Sally, I was glad to read your note. I have only been on Tykerb for 4 days. I have been taking 1, then 2, and now 3. It was very hard for me to make the decision to even take it. I have a lot of bloating. does anyone else have that??? How many are you taking? Is anyone out there taking it at night??? I wish I knew how to put a thread on but I honestly must be retarded because I can't see where I start a thread. I do wait an hour or more after my dinner before I take it. Need some advice. THANKS.!! Mary jeanne
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Old 08-15-2008, 06:52 PM   #4
Mary Jeanne Phillips
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don't know where my responses go and I don't know how to do a thread. I guess I will have to wait for my daughter to come for a visit this week to strighten me out. Thanks, MJ
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Old 08-17-2008, 11:30 AM   #5
doh2pa
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Hi Sally,

I was on Tykerb with Xeloda last year for 8 months. For the first 4 months, I had no side effects at all (and good scans) and then out of nowhere, I started getting diarrhea and other GI symptoms. So I think it's different for everyone.

Mary Jeanne,

I am back on Tykerb after a long hiatus (to try other things). I started back on gradually, like you and found that I could tolerate 4 but not 5. I too had lots of bloating - just horribly uncomfortable. GasX helped a little bit, but what helped the most is cutting back my dose to 4 pills. Perhaps you should talk to your onc about doing the same. My philosophy is that being on some dosage is better than none and quality of life is very important. So if you are very uncomfortable try to see if cutting back helps. Also, diet changes might help too. (I love salads but they kill me!)
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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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