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08-28-2007, 12:17 AM
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#1
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Michele U
I was curious like Rupali was on how the Tykerb is going? Are you doing ok and hanging in there? How bad has the side effects been...better or worse then you thought? When will you be finished with Tykerb? Seems you should be getting pretty close to done? I hope your doing well.  Sending lots of positive thoughts your way. Your a real trooper and then some!
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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08-29-2007, 10:36 PM
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#2
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Michele, Just thought I would bump up my own post in hopes you might pop & let us know how your doing with the Tykerb. Keeping you in my thoughts. I hope Tykerb hasn't been to rough on you.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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08-31-2007, 09:40 PM
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#3
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Senior Member
Join Date: Nov 2004
Location: Henderson, NE
Posts: 413
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Thanks for asking about me!!! Well, the tykerb is interesting all right! I'm supposed to be taking 5 tables a day. I was only taking 4 because i'm only 115 pounds and i thought that was alot of pills...I know, denial. When i take 4 most of the time one comes through the stool, or should i say diarrhea?! I thought, well it must be my body telling me, too many! I've been taking 3 lately. The first 2 days are ok , then the 3rd day really bad diarrhea. So on the weekends i stop taking it. This is my 2nd month. My dr. is letting me decide how long i want to be on it. I'm thinking 4-5 months. If my body can stand it. I know i don't eat the best, that's probably 1/2 the reason for the diarrhea. I've lost alittle weight on it.
__________________
Michele Ulmer
dx: August 2003 stage 3b 35 pos nodes ER/PR neg Her+
4 AC 12 weekly taxol
one year Herceptin in trial
35 rad tx
vaccine trial Seattle
NED
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08-31-2007, 09:50 PM
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#4
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Senior Member
Join Date: May 2007
Location: Eastern NC
Posts: 65
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Dear Michelle,
My sympathy on the fast-weight-loss-the-unpleasant-way side effects of Tykerb. I've had that one too. Have you tried immodium? My onc gave me a protocol which got everything under control very nicely and I've seldom had to use it since.
Rentrac
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Oct. 2003: Dx age 48, Stage IIIA Ductal Ca. dense dose neoadjuvent AC. BrCa 1&2 -, ER+, PR-, Her2+. 2004: R mastectomy, 3+ nodes, dense doseTaxotere ( allergic), total hysterectomy, radiationx36 . Tamoxifen x6 mo., Arimidex x9 mo. Jan. '06: Multi left metastatic nodes left neck. Stage IV. Taxol, Carboplatin (allergic to both), Herceptin, radiationx27. Herceptin cont'd. 1 mediastinal met in old rad field. April: 2 brain mets - Rcerebellar, Ltemporal lobe. Gammaknife. Stop Herceptin, Start Tykerb. May: CyberKnife-mediastinal node, Zometa restart. July: New RLung mets. Xeloda add. Jan. 2008: CT: Lung mets shrinking. Fatty liver w/increased liver function panel. Feb '08: MRI: brain mets back, 2nd GammaKnife. June: Migraine headaches from cerebellar tumor. Team for WBR - Choose Craniotomy on Cerebellum only. Aug: Crainiotomy successful. Sept: PET -right lung apex clean; left internal mammary artery appears malignant. Herceptin in future. Left mastectomy?
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09-02-2007, 01:42 PM
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#5
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Michele, I am so glad to hear your hanging in there and doing pretty well all things considered. It sounds like the Tykerb is like most the other chemo's as far as the 3rd day being the worse when the wonderful side affects hit. Diarrhea is not one of my favorites as it keeps you tied down a bit. Can't wander off to far. So you have fined tuned your dosage...I think you have this wired.
It sounds like Tykerb like many different drugs ruins your taste buds/appetite. I hope your managing to get something down because you don't sound like you can afford to lose too much weight. One heck of a way to diet. Your going to tough this out another 2 or 3 months. Wow...you go girl. Have your labs been ok on the Tykerb? Have you needed any Procrit or Neulasta, or are you holding up ok on that end? Thanks for the update...I have been really curious as to how you were holding up. I'm glad your hanging in there.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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