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02-21-2007, 09:19 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: San Francisco Bay Area in California
Posts: 176
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JoJo's new treatment regimen (clinical trial)
I look forward to getting OFF those nasty chemo's. Yea!!!! :-D
I am expected to begin a new treatment on Mon, Feb 26. The new treatment regimen is Tykerb & Avastin.
Crossing fingers in hope of medical success!!!
Additionally, I asked the other day (around 2 months ago or so), my onc nurse warned me that it was a pure wild guess, so she guessed that it was about 75% effiacy <spell?> of Herceptin in my case. Hopefully, Tykerb will be even more efficient this time around.
As you may know, Herceptin attacks her2, Tykerb her2 AND her1. We have yet to figure out how to attack her3. At this point, scientists are aware of her/neu pathways, which are: her1, her2, her3,
I have a mass near my shoulder -- it didn't completely respond to Herceptin -- maybe the mass has more of her1 and / or her3?
Oh well, who knows!!!??!!!
I would be MUCH appreciated, if you sent prayers & positive vibes my way. Having extra fingers to cross in my honor, in my humble opinion, wouldn't hurt! :-)
__________________
Blessings & Peace,
~jojo~
1st Dx: May '03 at age 35
Stage 3b
6cm IDC tumor
17/18 + nodes
Neoadjuvant: 4x A/C dose dense; 12x weekly Taxol & weekly Herceptin
Left Mastectomy: Nov '03
27x Rads
Stage 4 since June '04
Still on maintenance Herceptin since the very beginning
Currently on Abraxane (3 weeks / 1 week off)
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02-21-2007, 09:28 PM
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#2
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Crossing fingers for you JoJo. Good luck. BB
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02-21-2007, 09:33 PM
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#3
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Senior Member
Join Date: Nov 2004
Location: Streetsboro, Ohio
Posts: 365
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I will pray for you, Jo Jo. Can you believe it? Next year is leap year and the Winter/Summer Olympics. I know how you love those gymnists. Maybe you will be able to go again. God Bless You, from Lu Ann
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02-21-2007, 09:34 PM
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#4
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Good luck jojo. I start my first lot of chemo tomorrow - and I will be thinking of you on your new round - Belinda
__________________
Belinda
- Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
- Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
- May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
- March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
- Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
- January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
- Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
- Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
- ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
- Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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02-22-2007, 02:09 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Praying for good response--keeping you in my thoughts and prayers.
________
Nexium settlement news
Last edited by sassy; 08-22-2011 at 09:08 AM..
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02-22-2007, 05:57 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Jojo-
Goodl luck with it! I had tykerb with the xeloda clinical trial. And now I have avastin with herceptin and navlebine. I told my onc I wanted to add tykerb as soon as it became available, but he commented that if my scans don't show progression, it would not be the right time - we shall see....
Side effects of the 2 shouldn't be too bad - just report symptoms asa they arise so they can be dealt with.
Regards,
__________________
Shell
init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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02-22-2007, 08:37 AM
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#7
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Good luck with your trial, my prayers are with you. Please keep us posted as to how it goes and any side affects you may have.
__________________
Andi
-- ------------------------
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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02-22-2007, 08:58 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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Good luck and I send you positive energy every day Jojo.
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02-22-2007, 10:30 AM
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#9
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Sending my prayers and thoughts your way and hoping you get a good response to treatment.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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02-22-2007, 10:58 AM
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#10
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Saying prayers for you JoJo. I have heard such terrific results with the Tykerb. Monday is the day! Praying for minimal se's.
Hugs and Prayers,
Lexi
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02-22-2007, 11:17 AM
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#11
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Senior Member
Join Date: Jan 2007
Posts: 138
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crossing fingers and sending prayers.
Karen
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02-22-2007, 12:22 PM
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#12
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Prayer Heavenward for JoJo!
Peace,
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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02-22-2007, 03:06 PM
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#13
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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You got it JoJo! and of course we will want to know how you are feeling and managiing as you switch from chemos to avastin. How was abraxane, anyway?
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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02-22-2007, 05:17 PM
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#14
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Senior Member
Join Date: Sep 2005
Location: Lumberton, Mississippi
Posts: 118
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Praying for you too, JoJo. I pray the Lord will bless and keep you throughout this and always.
Linda
__________________
Diagnosed 12/23/04
Biopsy 12/28/04
Lumpectomy 1/04/05
IDC, ER-PR-, HER2Neu+++
7mm tumor, Stage 1, Grade 3
6 CAF's
38 Rads
Finished 10/05
"Worry looks around. Sorry looks back. Faith looks up."
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02-22-2007, 10:54 PM
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#15
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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JOJO,
Wishing you the very best with your new treatment!
I will keep you in my prayers.
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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02-23-2007, 09:46 AM
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#16
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Senior Member
Join Date: Nov 2005
Posts: 943
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Jojo, I will be praying for you--hang in there.
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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