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10-09-2006, 07:32 PM
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#1
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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My 6 weeks update on Tykerb/Xeloda!
I had my 6 weeks follow up with my oncologist and he was very excited when he looked at my chest. It is clear with no itching or burning. I am feeling well! I do have bouts of diarrhea when I am on the Xeloda but it is tolerable or at least so far. I had a few mouth sores the last 3 weeks they are gone this week(my 7 day break). I also have a crack on both thumbs but they are almost healed. I do use lots of hand lotion, wrap my thumbs during the day with ointment and bandaids, wear rubber gloves if I need to have my hands in water, wear cotton gloves outside as it is fall here and getting cool. I rinse my mouth with baking soda frequently, brush my teeth, stay away from acidic or spicy foods while on the Xeloda. Once I get it all down to a science I will be find. My wish for each one of you on this treatment is that it will work as well for you as it has for me. The nice thing is I am finally getting hair!! Its been a long time since I have enjoyed my own hair but oh what it does for our well being! Some call it vain I call it a woman's crowning beauty! Of course, I have enjoyed all my wigs and I have many but I am always ready to retire them. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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10-09-2006, 07:57 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Sandy, thanks for keeping us updated. I'm SOOOO delighted this is continuing to work well, and especially that you are getting the side effects "dialed". Getting your hair back will really be nice, you've been waiting a long time for that!
Keep up the good work
__________________
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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10-10-2006, 02:36 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: .
Posts: 211
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Dear sandy
I am so pleased for you.Its so exciting to get hair back - i agree. Keep us posted.
love
linda
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10-10-2006, 04:56 AM
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#4
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Great Job Sandy
I was so excited to hear your good news. So glad this is working for you and encouraging for others. Hopefully Food & Drug will get this drug pushed through quickly so everyone can try it.
I know what you mean about the hair - I am to the mini mini mini do but I have already put away my wigs for a while unless I have a special function to attend.
It feels soooooo good.
Keep us posted on your progress Sandy.
Note: I just finished my third cycle of the Xeloda. It's good to get that week
break in between isn't it? My thumbs are also cracked and wow you
would not believe such little cracks could cause such pain. My feet
look fine but they are starting to burn. I am fighting one mouth sore
but all tolerable. Hopefully this week break will resolve it all a bit.
Take care Sandy
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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10-10-2006, 06:28 AM
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#5
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Senior Member
Join Date: Jul 2005
Location: Ontario, Canada
Posts: 722
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Thay's great Sandy. Xeloda is an excellent drug.......but don't forget that the dosages used in the original trials were too high and later studies have shown that much lower dosages are just as effective. Because it is a daily dosing, more isn't necessarily better. If the side effects become uncomfortable, talk to the doctor about dose reduction.
Cheers,
Al
__________________
Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
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10-10-2006, 08:05 AM
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#6
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Really great news Sandy! I'm so happy for you, and also for all who are watching your progress on Tykerb, it brings much hope to all. Ditto on Al's mention of "less is more" re Xeloda. Also, when you have a smaller dose schedule, as I do, it can be taken continuously with no breaks. I'm taking 500mg twice daily, 24/7 with no side effects and having good results: stable, some shrinkage, and now that we've added rads having some major response.
Anyway, thanks for the great news, I'll be looking for your continuing reports!
<3 Lolly
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10-10-2006, 08:42 AM
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#7
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Sandy,
Thank you for sharing. It sounds like things are going in the right direction.
Best wishes and peace to you, Carolyn
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10-10-2006, 09:35 AM
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#8
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Sandy,
Great news! I'm so happy that you're having such good results with the Tykerb and that you are keeping us posted on your progress. Hopefully, others who travel down this road will have just as good of results.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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10-10-2006, 02:13 PM
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#9
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Al I started out with 3000 mgs but dropped to 2000 mgs and I may need to drop lower but time will tell. My oncologist says he does not like Xeloda because the side effects can sneaked up on us. He says many love the drug and get great results. Must be the hair we love right? Its great to hear from you Al and you are still with us. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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10-10-2006, 03:51 PM
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#10
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Sandy,
What a great report! That's wonderful that you are doing well with the tx. Keep us posted!
Hugs,
Lexi
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10-11-2006, 07:04 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Great Sandy! Super that you are finding a treatment that works for you, and may bring such great hope to others in the future.
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10-11-2006, 08:26 PM
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#12
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Thanks Sandy for keeping us posted on what is working. Best wishes, BB
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10-12-2006, 03:09 PM
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#13
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Senior Member
Join Date: Jul 2006
Location: Pasadena, CA
Posts: 32
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Thanks for the update
That is very encouraging Sandy. I hope to be on Tykerb/Xeloda in the next two weeks. SO very glad to hear it's working well for you!
__________________
Dx. 01/31/05 Lt. invasive ductal carcinoma
2/14/05 lumpectomy
4 ac, 4 taxol
10/11/05 lumpectomy for microcalcifications
10/31/05 lumpectomy for clear margins
Radiation
03/06 Herceptin
05/06 Dx. Lt IBC
05/06 Lt. Mastectomy
7/06 Gemzar/Carboplatin
09/06 Navelbine
No organ or bone mets
Chest lymph node involvment
10/06 Tykeb/Xeloda
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