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09-03-2006, 02:17 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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Tykerb update!
It has been only 5 days but I can see a big difference in my chest. The rash is 75% gone and the burning and itching is nearly gone!! I was having pain in the fat pad of the arm and around the port was hard and puffy. That has improved, pain in the arm, nearly gone and puffiness nearly gone around the port. Have stopped my pain medication I needed to sleep at night. I pray these great results for all those that are on this drug or waiting to get it. I am anxious to get an update on Irene both on her trip and the drug. Will continue to keep you update. 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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09-03-2006, 02:37 PM
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#2
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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Sandy,
What wonderful news.
I think the news of Yoda doing better and your success with Tykerb have made my day.
Hugs,
Karen
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09-03-2006, 03:07 PM
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#3
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Wow!
That was some FAST response - only 5 days.
When will you see your doc again? He will be impressed. I would think he would want fairly close followup with this being a new drug, etc. Was there any info on skin mets in the trials??
To get off a pain pill is a major improvement. I cringed when you described the sizzling bacon fat feeling. My chest was still a little sore from port replacement at that time, so I related!
Hopefully your news will be just what some other's docs need to get off the dime and get this drug for them. Hopefully Tykerb will be like Herceptin and have a better success rate in actual wider use than the trials show.
Glad you are resting easier with good news for both you and "little" Yoda. At least you are not stressing your arm carrying him now. 
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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09-03-2006, 05:11 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Superb!!!!! You are a hero to try this new drug and keep us "abreast" of all your great results.
I am so happy for you
Becky
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09-03-2006, 05:38 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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Dear Sandy,
This is the best news. I heard before that Tykerb had the best result for IBC. I'm so happy for you and I wish this is the end of Skin mets for you and NED...
Big hug,
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09-03-2006, 08:05 PM
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#6
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Senior Member
Join Date: Nov 2004
Location: Streetsboro, Ohio
Posts: 365
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Hi Sandy,
Are you taking anything else with the tykerb? What is the dose for the tykerb and the other meds if taken. I have been on xeloda since May, 06. I started out with 4000 mg. daily, then reduced to 3000 mg. because of side effects. My oncologist has me on the compassionate list for tykerb as soon as it is approved. I'm wondering if I will still be on the same mg. amount of the xeloda when I start the tykerb.
I'm so happy that you little Yoda is doing better. Are you still going to go to camp? My husband and I were going to go to Maine to celebrate his birthday and our 25th anniversary, but we are broke and the car needs repairs. Our kids and my Mother in-law had a party for our 25th so I'm satisfied.
Tom is on vacation for the next 2 weeks and we have some day trips planned that don't cost an arm and a leg. I'm just greatfull that the gas prices have come down, $ 2.38 a gallon in Streetsboro, Ohio.
Take care and God Bless You, Your Husband, Little Yoda, and Everyone else.
Lu Ann
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09-03-2006, 09:14 PM
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#7
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Oh Sandy, that is great news!! Just amazing!! I am really excited over these results. Your doc will be thrilled!
I am so happy that Yoda is doing well, too. I picture what he looks like and it makes me smile.
Lexi
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09-03-2006, 09:29 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Wow Sandy that's fantastic! I have heard of people having good results with these treatments but it is so good to feel you really "know" someone involved successfully. Thank goodness for you. Take care and keep us up to date. God bless.
Cathy
__________________
Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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09-03-2006, 10:01 PM
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#9
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Sandy - You're having an amazing result with Tykerb. Hopefully, other women will benefit as much as you. Glad to see Yoda is doing better.
__________________
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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09-03-2006, 11:32 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Sandy,
Been away for a few days...how great to come back to see headlines on your posts about TYKERB working and you AND Yoda on the mend!
I'm so happy to hear your good news. And Tom just cracked me up with the Yoda working the windows comment....
Take care
Chris
__________________
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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09-04-2006, 03:59 AM
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#11
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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AWESOME NEWS Sandy!!!!
and I hope it CONTINUES to work. Take care and God bless.
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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09-04-2006, 08:55 AM
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#12
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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I take 3000 mgs. of Xeloda with the Tykerb. Am experiencing a little diarhea and some gas but no nausea. I see my oncologist during the third week break on Xeloda. I take 5 pills of Tykerb in the morning on an empty stomach and 3 pills (500 mgs each) of Xeloda and also 3 at night with food. Tykerb is taken every day and Xeloda is 14 days on and 7 days off. Will also have blood work done at next oncologist visit. My oncologist did say he saw information showing good results using Tykerb for skin mets when he went to Atlanta in June. I have not seen any. I did see a trial where they used Tykerb for IBC with good results. I am with Steph hoping it will continue to produce great results beyond what they already know. 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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09-04-2006, 01:02 PM
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#13
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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Couldn't Hear Better News
Sandy,
I forwarded your post to our friend at GSK. She actually has been rooting for all of our members who has entered the trial. I'll forward you her answer when I receive it.
Cathy will also be at San Antonio this December so you will be able to meet her personally.
Hugs
Christine
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09-05-2006, 08:47 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Sandy-
I am delighted with your progress - if you haven't seen it, at the xeloda website there is a good treatment diary - i use it to indicate any of the symptoms I'm having so I can keep my medical team up to date...
continued good luck with it,
Shell
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09-05-2006, 09:03 AM
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#15
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Sandy, I'm so thrilled for you! I have high hopes for Tykerb for all of us, and this news confirms it  |
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09-05-2006, 09:33 AM
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#16
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Senior Member
Join Date: Sep 2005
Location: NYC
Posts: 250
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Yea! You're leading the way for so many women, thanks for sharing your experiences.
Jen
__________________
dx 4/05 @ 34 y.o.
Stage IIIC, ER+ (90%)/PR+ (95%)/HER2+ (IHC 3+)
lumpectomy-- 2.5 cm 15+/37 nodes
(IVF in between surgery and chemo)
tx dd A/C, followed by dd Taxol & Herceptin
30 rads (or was it 35?)
Finished Herceptin on 7/24/06
Tamox
livingcured.blogspot.com
"Keep your face to the sunshine and you cannot see the shadow." -- Helen Keller
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09-05-2006, 10:34 AM
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#17
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Deceased
Join Date: Mar 2006
Location: Virginia
Posts: 113
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Yay!!!
Sandy,
This is wonderful news. I am so happy that things are improving so quickly for you. I am just tickled pink that you and Yoda are on the mend. I will keep praying that good things continue.
Big Hugs,
Nicola
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09-05-2006, 11:26 AM
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#18
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Guest
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Sandy I am sooooo happy for you! I only hope tykerb/xeloda will be the bullet for me. Question - since this is trial compassionate use, is there an out of pocket expense for the xeloda? Is the insurane billed or is it included in the treatment?
Best of luck!!!
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09-05-2006, 02:46 PM
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#19
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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The Tykerb is free but the Xeloda I get with a prescription at the drug store every three weeks and billed to my drug card. I have heard that in some cases some insurances may not pay for follow up scans every 6 weeks. I don't know if that is true or not. I have 3 insurances so far I have not had to pay any out of pocket for any of my treatments, or follow ups. 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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