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Old 06-07-2007, 07:36 PM   #1
Muldoonmom
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Location: Coconut Grove, Florida
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Smile Turning the corner!

I'm so happy to report that the side effects of Tykerb are finally starting to abate. The first time I started Tykerb in mid-April, my onc gave me my 5th Taxotere tx around day 5 and I crashed and burned with uncontrollable diarrhea and a terrible rash with itching. I went off everything for nearly 3 weeks and restarted the Tykerb almost 3 weeks ago with Herceptin only. Again, I had diarrhea but I could control it with Lomotil. The rash was very bad again - mostly on my chest this time- and it was terribly itchy. He gave me Periactin which helped considerably with the itch. Finally, yesterday I began to see the rash clearing up. I have only a few new pimples and the old ones are healing. And the itch is gone! Ditto for the diarrhea.
I am so relieved! My husband told me that he was giving me one more week and then he was going to throw away the pills (Tykerb) if I wasn't getting used to the drug. WHEW!!!!! Looks like I'll be fine staying on it for the long haul. After waiting so long for Tykerb to become available, I so want to be able to take it.
My bone pain is almost completely gone. I won't have another PET/CT for another 2 months and I'm anxious to see the results. Especially since my last PET in late May showed some progression in lymph nodes and possibly something in either the adrenal gland or diaphragm.
I hope that this gives some comfort to others who are struggling through the first few weeks on Tykerb. Looks like the side effects, which of course vary by the individual, do eventually subside!
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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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Old 06-07-2007, 07:52 PM   #2
Carolyns
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Hi Debbie,

I am so glad to hear your good news. Bone pain gone = great news.

Enjoy your two months between scans especially since you are feeling so much better. It sounds like you have made real progress.

Take care,

Carolyn
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Old 06-07-2007, 08:27 PM   #3
chrisy
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Hi Debbie,

Sounds like you had a wild ride. Glad to hear things are settling down - now let's have that Tykerb kick the cancer's butt instead of yours! Keep us posted on how you are doing with the Tykerb and Herceptin (I think that's what you're on now!)
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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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Old 06-07-2007, 09:33 PM   #4
Muldoonmom
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Location: Coconut Grove, Florida
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Hi Chris,
It just feels so good to feel good again! I was getting discouraged because if I couldn't handle the tykerb/herceptin combo, I'm not sure what options I still had. I've been on so many chemos over the past 8 years and this was the first time in 5 years that I've been off any cytoxic agents. (I think I said that correctly.)
Thanks for you support! I will keep you all posted as this phase of the journey continues. I have to say that I am feeling much more optimistic.
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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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Old 06-08-2007, 07:21 AM   #5
Andi
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Debbie - I'm glad to hear things are working for you. With the kind of rash you had, your response should be very good with they Tykerb.
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-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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Old 06-08-2007, 06:14 PM   #6
Lolly
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Debbie, I'm so glad for you that the worst of the side effects are clearing up! My rash is almost gone also, after 5 weeks, and I have only an occasional bout of diarreah.
And whew! on the bone pain, keep us posted on the scan results.

<3 Lolly
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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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