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02-13-2011, 10:04 PM
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#1
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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High Dose Tykerb Experiment - wish me luck!
Hello lovelies - Its been a while since I've posted a thread but I thought some of you might be interested in my latest little experiment. As you can read from my signature, I've had another bout with brain mets recently. All else seems to be going well - we'll scan brain and body again in a few weeks to confirm that I'm coasting.
In the meantime, my doc and I have decided to try a little experiment to see if we can't find a way to keep me from getting new brain mets. I'm already taking Tykerb so we decided to play around with the dosage a little.
UCSF has a clinical trial where they are looking to see if a few days of high dose Tykerb, followed by a few days off, is a more effective way of administering the medication. The theory of some scientists there (Dr. Moasser) is that it is a much more effective drug in high doses but can only be tolerated for so long because of GI side-effects like diarrhea.
Rather than join the trial, I'm running my own self-experiment, with my doctor's permission of course, to see if this might work for me. I'm going to work up to 3500 mg/day for 5 days followed by a 9 day rest cycle. So far I'm on day 3 and have worked up to 3000/mg per day. I'll take the larger dose tomorrow and Tuesday and then I'll take 9 days off before repeating. Hopefully diarrhea won't be too much of an issue and I'll be able to give this a try for a little while to see if it just might make a difference.
I'm curious if anyone else has any experience with this or has been on the trial? Thoughts? Am I crazy?
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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02-13-2011, 10:15 PM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: High Dose Tykerb Experiment - wish me luck!
NOT crazy - just want to keep the little devils from coming back! No harm in working a new system to see if you can get a longer period (or never) between brain mets.
I'm excited for this "personal trial" and thrilled your doctors are willing to work with you this way. Hooray for personalized treatments.
__________________
"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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02-13-2011, 10:32 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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Re: High Dose Tykerb Experiment - wish me luck!
Very interesting! Just curious, is this the dosage schedule in the trial? Or if not, how did you arrive at that dose/days?
I also second stephs sentiment- great, and rare to get a doctor willing to tinker with the "standard of care" even with good theory behind it! Let us now how it goes!
__________________
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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02-13-2011, 10:52 PM
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#4
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: High Dose Tykerb Experiment - wish me luck!
Courtney, good luck. I tried a mini experiment too (with my onc's approval) after reading an an article posted by Rich or GDPawel. I think it was referred to as "pulse" doses or something. I am sensitive to Tykerb so I only went up to 3000mg a day for three days around the time of my weekly Abraxane. Think I only tried it for 2 cycles bc that was all I had of the drug at the time. I can't be sure of the timing of the onset of my response but I did only start showing good response when Tykerb was added to the Abraxane/Herceptin mix. You could hardly say I was rigorous in my methodology! I am now on a more conventional daily 750mg and still responding. Fingers crossed.
Hope it works to keep your pesky mets at bay.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004 6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006 oopherectomy, Arimedex
12/2006 liver mets largest 9cm
1/2007 Herceptin,
3/2007 Taxol + Herc
1/2008 Herc alone
4/2008 Multiple bone mets,Zometa
7/2008 Herc + Gemcitabine
8/2008 Herc+Navelbine/vinoralbine
10/2008 Herc+Carboplatin+Taxol
12/2008 Tykerb+Xeloda
2/2010 Herceptin + trial drug
5/2010 Herceptin+Tykerb
8/2010 Tykerb+Abraxane
9/2010 Abraxane
12/2010 Abraxane+Tyk+Herc
4/2011 Tyk+Herc+Femara
6/2011 Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011 Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011 Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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02-14-2011, 08:14 AM
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#5
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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Re: High Dose Tykerb Experiment - wish me luck!
Hi Courtney,
How many tablets is that daily? I am going to mention this to my oncologist tomorrow. Thanks for sharing and very best of luck.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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02-14-2011, 09:23 AM
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#6
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Guest
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Re: High Dose Tykerb Experiment - wish me luck!
Dear Courtney,
we discussed that trial a month ago here http://her2support.org/vbulletin/sho...hlight=moasser. It seems to be very promising. It's great that it is continued. How many people will participate in this trial?
Good luck, you young warrior ))))))))
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02-14-2011, 10:19 AM
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#7
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: High Dose Tykerb Experiment - wish me luck!
Hi Courtney, Just wanted to say good luck with the tykerb experiment sounds very new to me! I have been on 5 tablets of tykerb since sumnmer 2008--keep the immodium on hand! I take 2 a day as a preventative for the runs to the bathroom...was advised to catch it before the stomach starts to react. Take care, sweetie. Ceesun
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02-14-2011, 12:00 PM
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#8
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Senior Member
Join Date: Jul 2010
Posts: 42
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Re: High Dose Tykerb Experiment - wish me luck!
Courtey,
your doctor is so open minded and good for you. Best wishes for your little experiment and it seems you tolerate the drug well. I am on 5 pills a day now for 10 days; still adjust to diarrhea and loss of appetite.
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02-14-2011, 12:15 PM
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#9
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Senior Member
Join Date: May 2009
Posts: 510
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Re: High Dose Tykerb Experiment - wish me luck!
Hi Courtney!
That's so exciting!!! I heard Dr. Moasser speak about his research a couple of times at UCSF and could feel his excitment, belief, and passion for this approach. It definitely works in mice and hopefully will work in humans too!
Just make sure you use that Suki lotion every night to avoid a skin rash - I think it was you that recommended it here on this board and it was a lifesaver for me when I was taking Tykerb.
Good luck and keep us posted!
Marcia
__________________
ER+ (30%)/PR-/HER-2+, stage 3
Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin
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02-14-2011, 01:41 PM
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#10
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: High Dose Tykerb Experiment - wish me luck!
Courtney,
Let me know how the experiment goes. I have been taking 1 Immodium 10 or 15 minutes after taking my Tykerb. My dosage is 800 right now because the last two cycles with Xeloda I had really bad diarrhea. I have put on 4 pounds, so I am sure they will up the dosage. I currently take 5 pills everyday.
Please let me know what happens.
Amelia
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02-14-2011, 05:17 PM
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#11
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: High Dose Tykerb Experiment - wish me luck!
Courtney,
Glad to hear that your onc is willing to let you personalize a trial. Let us know how it goes.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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02-14-2011, 05:55 PM
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#12
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: High Dose Tykerb Experiment - wish me luck!
Good luck Courtney, this certainly sounds like a very promising "experiment."
I hope you get great results....
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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02-14-2011, 07:09 PM
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#13
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Re: High Dose Tykerb Experiment - wish me luck!
You go, Courtney! Please keep us posted. Our prayers and best wishes are with you. I'm glad that you have the good doctor that you do.
__________________
For Nicola
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02-14-2011, 07:13 PM
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#14
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: High Dose Tykerb Experiment - wish me luck!
Courtney;
Good luck with your experiment and that the BMs will be gone for good. You may be helping me too. I'm not sure what they are recommeding for me nothing or Tykerb/Xeloda.
I wish you great success with your experiement.
Love and Hugs,
Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found
Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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02-14-2011, 07:21 PM
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#15
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Re: High Dose Tykerb Experiment - wish me luck!
Thank you all for the encouragement and advice. So far, so good. I'm experiencing some appetite loss (bummer since I have a fun dinner planned tonight for Valentine's Day with the hubby) and some diarrhea but so far it is manageable. Only 1 more day until the off period begins!
To answer some questions, we based our protocol on this abstract presented at ASCO a few years ago:
http://www.asco.org/ASCOv2/Meetings/...stractID=31533
The study there describes a 14-day cycle with 5 days of Tykerb and 9 days off. Starting dose was 1750 mg and went as high as 7000 mg! For my experiment, 3500 mg is really as high as we can go given that insurance only approves a daily dose of 1250 mg (5 pills). So that's where the number came from. No real science to it.
Okay, off to enjoy Valentine's Day. I'll update y'all when I have some news to share. Take care and thanks again!
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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02-15-2011, 04:43 PM
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#16
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Senior Member
Join Date: Sep 2005
Posts: 556
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Re: High Dose Tykerb Experiment - wish me luck!
Hi Courtney,
Are you on Tykerb with Herceptin now? Wishing you all the best with your new approach.
-Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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02-15-2011, 08:55 PM
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#17
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: High Dose Tykerb Experiment - wish me luck!
Courtney,
Hope you enjoyed your Valentines Day dinner with your hubby. It is so important to make time for the fun things in life.
Good luck with your experiment. You are an amazing young woman!
Keep us posted.
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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02-17-2011, 07:17 AM
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#18
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Member
Join Date: Aug 2010
Posts: 7
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Re: High Dose Tykerb Experiment - wish me luck!
Hi Courteney,
I am keeping my fingers and toes crossed for you. Will be really interested to see how you get on. Hopefully this will keep those pesky critters away for ever!!
__________________
Flossie
Jan 2006 DX large lump in armpit. 2 x 5mm tumors in left breast.
FEC for 6 cycles
Aug 2006 Mastectomy + Herceptin 1 yr + Tamoxifen.
Aug 2007 Lat Dorsi Reconstruction + Tamoxifen
Aug 2008 3cm brain met gamma knife +mets in rib and neck 5 x RT/Herceptin/Arimidex/Clodronate.
Apr 2009 11 mets Gamma Knife/Capecitibine/Tykerb
Mar 2010 3 mets Gamma Knife/Zometa/Femara/Tykerb
Mar 2010 Pet Scan all clear continue Tykerb
Aug 2010 12 mets + Zometa/Femara/Tykerb
Jan 2010 5 Years!!
Mar 2010 - Gamma Knife 7 mets
Aug 2010 - Gamma Knife 12 mets
Jan 2011 - 6 Years!
Mar 2011 - Gamma Knife
Mar 2011 - Taxotere
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02-17-2011, 05:07 PM
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#19
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: High Dose Tykerb Experiment - wish me luck!
I think this is fantastic, and I will be keeping a close eye on you lady... to see what comes of this.
I just did 5 more days of IMRT on 3 previously treated brain spots and also the one in the pituitary area (inside skull, but not blood brain barrier) which seemed to show increase, but still no new spots, which I consider good news.
I also enrolled in the T-DM1 EAP trial in Denver this week, so I am off of Tykerb and tamoxifen now. I get my first T-DM1 treatment in Denver on March 4! Whew. I did it. I am excited. My trial doc is top notch and I think this will be a great opportunity on my path.
Can't wait to see what your experimental treatment regimen yields, but it sounds like a great idea! I recommend taking liquid immodium every morning as a matter of course, 1/2 to a full capful as seems necessary. It is so much easier to stay ahead of the pooterookis instead of trying to rein it in!
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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02-17-2011, 08:37 PM
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#20
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: High Dose Tykerb Experiment - wish me luck!
Brenda I'm so glad you've been accepted into the T-DMI trial. How often will you get that mountain view? ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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