| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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05-02-2007, 10:27 AM
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#1
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Stopping Tykerb
I have been taking tykerb for a week and have decided to stop it. The diahrea is so bad. Every time I eat something it goes right through me like a water faucet. Immodium does not help. I am so weak from this. I was taking it with Herceptin as a preventative. My Oncologist wasn't even sure I should do this but since I insisted, he agreed. I figure if my cancer comes back and I need to get on this, I will have to put up with the side effects. But right now it's just not worth it. Why put my body through this until I need it. ...sherryg683
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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05-02-2007, 12:51 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Sherry, so sorry that your Tykerb side effects were so severe. I think you are going with your gut and making the right decision for you. You're right, if it became a life threatening issue, then we learn to live with certain side effects for the benefit.
You can keep the Tykerb in your back pocket until you really need it.
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05-02-2007, 05:09 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Sherry,
Wow - after you agonized over the decision and fought so hard for this! Maybe your body is giving you a sign that this is not the right time for you to be taking this drug. Enjoy life without those nasty side-effects, and keep that stuff in remission for another 20 of 30 years on just the Herceptin, okay?
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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05-03-2007, 09:10 PM
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#4
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Senior Member
Join Date: Jul 2006
Location: Coconut Grove, Florida
Posts: 25
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Sherry,
I wasn't really sure if the severe (and I mean SEVERE) diarrhea I experienced was due to the tykerb. But based on your experience and others, I'm now sure that was it. DARN!!
Now I've decided to stay off it a little longer. My daughter and granddaughter arrived today from Buffalo and we're having a baby shower at my house on Sunday. Then next week, my husband and 93 year old Mom and I are going to Buffalo for my daughter's college graduation - on Mother's Day. I do not want to jeopardize either occasion with the most miserable side effects!
I'm so glad I found this website. Your input really helps me through a difficult time.
Unfortunately, I can't give up on the tykerb yet. Too much going on with mets. But I remain hopeful that I'll be able to get through the side effects and after a few weeks, I'll adjust to the drug. I never had any problem with Herceptin. I'm surprised that tykerb can upset your system so harshly.
__________________
Debbie
8/96 - Diagnosed Stage I - 1.8 cm tumor in left breast
0+ lymph nodes, ER+/PR-
Lumpectomy, radiation, CMF x 9, Tamoxifen
6/99 - Stage IV - 1.2 cm tumor in left lung, HER2 NEU +
VATS thoracotomy, Herceptin and Arimidex
2000 - Bone mets to left scapula and right ribs
Herceptin; Taxol x 9, Zometa
2/2001- Rt. lung - 6 mm tumor
Mini-thoracotomy
2/2001 - 12/2006
Xeloda-10 months, Navelbine-10 months,
Gemzar, Abraxane, Taxol/Carboplatin x 10, Aromasin, Faslodex,
Zoladex, Tamoxifen
2001 - Radiation to left scapula for pain managenent
9/2004 CyberKnife to right rib
7/2006 - Pleural effusion - thoracentesis performed twice
1/2007 - Pleuradesis and Taxotere x 5
4/2007 - Stopped Herceptin after 8 years (weekly).
Started Tykerb with Taxotere but stopped after 10 days
5/2007 - Stopped Taxotere, restarted Tykerb and Herceptin
Currently on Tykerb, Herceptin, Zometa
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05-04-2007, 08:40 PM
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#5
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Sherry, how are you feeling? Are things back to normal yet? Hope so.
<3 Lolly
__________________
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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05-06-2007, 09:04 PM
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#6
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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I'm feeling back to my old self again after stopping the tykerb. The diahreah quite immediately. But just after those few day on it, i had all these little pimples pop up all over my face. They are just now going away. Figures, I would have all the side effects realated to it..lol. If I have to get on it for necessity, then I will just have to put up with it..but not now...sherryg683
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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05-07-2007, 06:28 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Shery-
The diarhea can be severe, and you are wise to save it for when needed. Like muldoonmom I can't stop it now due to progresion of mets, but the immod seems to work for me...
Regards,
__________________
Shell
init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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05-08-2007, 08:28 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Sherry:
Another idea would be to take a smaller dosage of Tykerb, go from 5 pills to 3 pills a day.
The pimples would indicate that you are a good responder to it.
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05-08-2007, 08:40 PM
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#9
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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That's interesting about the pimples and being a good response. I must really respond to it because after just a few days it looked like I had splattered a powdered donut all over my face. I think I am going to just wait if I need it later, I know my oncologist is going to give me grief about getting off it because he joked about all the papers he had to sign to get me on it...lol..sherry
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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