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06-19-2008, 08:39 PM
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#1
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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had first infusion
Hi everyone, and thank you to you, run to live, for inquiring about the infusion. So, yes everything worked out and I made the trial. I was the 100th patient in this particular study of dm-1 and it is now closed. I feel like I am in a movie where I am running after a train and they keep the door open for me and I hop on out of breath.
I went to Denver accompanied by my amazing boyfriend. He happily sacrificed his work day to drive us and hang out all day. And it was all day as many of you know, with the first infusion. I had to see the doc again, have 10 vials of blood drawn and peripherally as some are required as such and my port decided to be cloggy-of course (that did resolve).
Then the drug itself was delayed at the airport due to some mechanical problems with Fed Ex. The coordinator was wonderful and continued to give us updates on the whereabouts of the drug. We did manage to get out for a walk while we waited. Once the infusion stared I was monitored with vitals every 15 minutes and then there is a 90 minute observation period in which the same monitoring continues. My man brought me lunch and we managed to laugh a lot about everything. Then we had to wait 4 hours and come back for a CBC. We went to the Botanic Gardens and had another lovely walk followed by another walk near the center. All of which was great as it was a super summer day and when I was in the infusion room I wanted to chew my paw off. But, we made new friends with patients and staff (so weird to be in another treatment center). Everyone was great.
When we left it was heavy traffic time so we decided to kick around Cherry Creek (a swanky part of Denver nearby) and we had yummy sushi and then cruised home to his place to relax. We were both tired from the day and a lot of activities in the preceding days.
I felt find during the infusion and continue to feel fine. Had a headache late last night and some of today. I was tired and slept a fair amount today, but I actually think that had as much to do with too little sleep before yesterday as well as the drug.
Luca told me he was so glad to be there and after he said he was so pleased that he went and that he admires me for the way I handled it with dignity and grace and humor and that he loves me even more than before. I got a lot of hugs. Now, I happen to know that all of us handle this nonsense the same way, but to hear that from someone directly and someone you cherish with all of your heart and soul is beyond words.
I feel so blessed to have this opportunity, to feel so good still and to have him. Now, it better WORK!
Love to all of you and any good thoughts on this thing working are very appreciated. You all always have my good wishes and prayers and I continue to thank God for this site and all of you!!!
__________________
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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06-19-2008, 08:46 PM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 823
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Joy glad to hear that all went well with your 1st infusion.
Your Man "Luca" sounds wonderful and very caring.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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06-19-2008, 08:48 PM
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#3
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hey Little Sis! I'm glad your day went so well, and that you had a good time and a good man with you. It's good to hear from you. Love ya, Bill
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06-19-2008, 09:02 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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You go, Joy!
Yeah Joy!
You go girl! You are blessed and I am thrilled that you made that trial, what a blessing and a Godsend.
Now go have some more sushi for me (my favorite) and kick your heels up....this is going to work! Love and hugs, Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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06-19-2008, 09:06 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Joy, thanks for posting - great image of them holding the door open for you! Once again, I will have better information than my trial coordinator, not only knowing that they have reached the accrual goal of 100 patients, but that I actually KNOW her! I think they kept that door open for you for a reason.
Sounds like your long day was much nicer than mine, and I'm glad you are feeling so well. Please keep us posted, sister!
__________________
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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06-20-2008, 06:30 AM
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#6
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Joy,
I am so happy for you, that you made the trial, and that you have such wonderful support. Please keep us updated. Best of luck to you with this new treatment.
Hopeful
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06-20-2008, 06:58 AM
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#7
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Joy,
I am thrilled to hear you are the 100th but to us here at the board you will always be a #1 person....
Glad you are on your way and you deserve that loving support...give him a hug from us.
Hugs to you,
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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06-20-2008, 06:24 PM
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#8
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Senior Member
Join Date: Nov 2004
Posts: 190
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Hey Joy,
I am very happy for you. Because of you, I have entertained thought of dating again at stage IV.
__________________
8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
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