 |
|
01-15-2009, 01:45 PM
|
#1
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
Vaccine Trial
Will everyone say a pray for me? I am trying to get in a vaccine trial, and all my medical records have been received, and the doctors are suppose to look over them tomorrow.
Thanks,
Amelia
Yes, I Believe.
|
|
|
|
01-15-2009, 03:17 PM
|
#2
|
|
Senior Member
Join Date: Nov 2004
Posts: 190
|
Amelia,
I am praying for you! I think vaccines are the way of the future.
Kim
__________________
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
|
|
|
|
|
01-15-2009, 03:27 PM
|
#3
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
Thank you Kim, and God Bless You. I am so anxious about this I can hardly stand it. I am happy, but I know if I find out tomorrow they will not accept me I will be disappointed.
If I am rejected, then I will apply to another trial.
Amelia
|
|
|
|
|
01-15-2009, 06:21 PM
|
#4
|
|
Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
|
Just said a prayer that the doors to the trial will fly open for you. Let us know how you make out.
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
|
|
|
|
|
01-15-2009, 08:37 PM
|
#5
|
|
Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
|
Amelia, Prayers coming your way. I am sending all my energy to get you into that study. I, too, think vaccines will become a wave of the future. Much love, 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.
|
|
|
|
|
01-15-2009, 09:00 PM
|
#6
|
|
Senior Member
Join Date: May 2006
Posts: 3,142
|
vaccine Trial
I just said a prayer for you. I would cross my fingers too, but if I did I couldn't type. Come and sit awhile by the campfire. Someone is serving some delicious kale soup tonight.
|
|
|
|
|
01-16-2009, 05:27 AM
|
#7
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
Tonya, Vickie, and Elaine,
Thank you so much. I have just gotten to school, and this starts my door in a very positive way.
God Bless all of you. I hope I know something by this afternoon or Monday.
I love the campfire. All of you will never know how much this board has meant to me in the last year.
At this time last year, I was so frightened and afraid, but God helped me to find all of you!
Amelia
|
|
|
|
|
01-16-2009, 06:27 AM
|
#8
|
|
Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
|
Amelia,
Another set of last minute prayers coming your way!!!
Of course I certainly agree with your last post about how supportive the everyone on the board is.
But you really provided a powerful message that I will tuck in my basket of positivive thought.
God did direct us to this site. So, in many subtle ways God is with us and takes care of us. Keep that in mind as await for your results. If they are not what you had hoped, there is another path that has been chosen for you and what you need for the journey will be provided along the way. I guess knowing that is what is called Faith.
Wow....didn't mean to wax philisophically so early in the morning.
Thinking of you!!! Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
|
|
|
|
|
01-16-2009, 06:31 AM
|
#9
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
Lori,
Thank you for your prayers.
Amelia
|
|
|
|
|
01-16-2009, 06:59 AM
|
#10
|
|
Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
|
Keeping you in my prayers also.
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
|
|
|
|
|
01-16-2009, 08:16 AM
|
#11
|
|
Senior Member
Join Date: Sep 2006
Posts: 57
|
Hi Amelia,
My prayers are with you. I participated in the U of Washington vaccine trial Jan. 07 - July 07. I was accepted with like 5 days remaining in my "window of opportunity". I took it as a sign and got on that plane to Seattle. My experience was great each and every time I flew out. (Seven times all together.) I am still NED.... so far so good. If you qualify and you think I can help with any information, just let me know. I realize each trial is unique, but maybe just a hand to hold would help. Let me know if there is anything you need.
Missy
|
|
|
|
|
01-16-2009, 08:57 AM
|
#12
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
Missy,
Thank you. I will be getting in touch with you about how you did your airfare and your hotel room. I am so anxious today I can hardly sit still.
I have a friend and she will help me with making the arrangements.
Missy, like me you have not posted all the things that have happened during your journey. I was wondering where your BC was besides your breast? Mine was in my L4 of my spine.
Amelia
|
|
|
|
|
01-16-2009, 09:55 AM
|
#13
|
|
Senior Member
Join Date: Sep 2006
Posts: 57
|
Hi Amelia,
It has been quite a journey. I was diagnosed in Jan. of 06. I arrived at Stage IV with liver mets which probably should have been diagnosed at my original staging screenings (Jan. 06); but the mets weren't detected until May. So far no other sites. I have been NED since Aug. of 06. My trial required NED or stable bone mets. If you are going to Seattle I can probably be somewhat helpful. If you are going to another location I could give you the general info. about travel and hotel help, but i may not have the exact contact info. In any event, just let me know if you think i can help. I would be happpy to try.
Missy
|
|
|
|
|
01-16-2009, 12:40 PM
|
#14
|
|
Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
|
Adding my prayers that you get selected for this trial. God bless.
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
|
|
|
|
|
01-16-2009, 12:48 PM
|
#15
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
Thank you Missy and Shobha,
I got an e-mail at lunch that one doctor has signed off agreeing to let me in the trial, and the medical information was placed on the other doctor's desk yesterday afternoon.
So, I am waiting for that doctor to review and sign off. Please let her/him come to the office today. I am so anxious about this.
Amelia
|
|
|
|
|
01-16-2009, 12:54 PM
|
#16
|
|
Senior Member
Join Date: Sep 2006
Posts: 57
|
Hi Amelia,
Will you be pressed for time to get to the vaccine location once you get approval? If so, start researching airfares (provided you need to fly) right now. Continental and Southwest both have programs that allow you a free flight for medical treatment. Although this time of year with fares prretty low, you may want to save the free ones for later. Both programs include plently of hoops to jump through and some red tape, best to get things ready "just in case". Please let me know if you are trying to get in to a program in Seattle. I can help with some hotel info.
Missy
|
|
|
|
|
01-16-2009, 01:18 PM
|
#17
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
Missy,
Thank you for this information. I did not realize that I might be able to get a free flight.
Amelia
|
|
|
|
|
01-16-2009, 03:41 PM
|
#18
|
|
Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
|
Ameila,
I know how strongly you feel about this and how much you want to be in the vaccine trial.
Will be saying many prayers for you and please let us know as soon as you hear anything.
Best of luck and lots of hugs,
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
|
|
|
|
|
01-16-2009, 09:46 PM
|
#19
|
|
Senior Member
Join Date: Sep 2006
Location: Nebraska
Posts: 154
|
Amelia, what vaccine trial is it that you are trying to get into? I was in one at Seattle WA through the tumor vaccine group...just wondering
__________________
Michele Ulmer
Dx.2003 Stage 3b 35 pos nodes
Dx August 2003 Stage 3B with 35/35 nodes IDC age 39
Lumpectomy
A/C x4 Taxol x12
35 radiation tx
1Year Herceptin in trial
HER2 vaccine trial Seattle
3 months Tykerb off label
NED
|
|
|
|
|
01-18-2009, 04:49 PM
|
#20
|
|
Senior Member
Join Date: Oct 2007
Posts: 1,851
|
Amelia,
I'm praying that you'll get into the trial.
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!!
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 03:00 AM.
|
Linear Mode
