 |
07-31-2009, 10:16 AM
|
#1
|
|
Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
|
Link to Carolyn's TV debut today
Hi All,
No I did not get into the new TDM1 trial yet... but, the attached link was on the news today talking about my desire to get into the trial. You will see me and my amazing son. Talk about going out of the closet. I have been so quiet about cancer and now to come out on local tv talking about mets... Wow, even for me, I must say I have come a long way. Now, please everyone keep your fingers crossed that I can get into the trial and that it works for me.
http://cbs4.com/video/?cid=145
Love, Hope, Peace, Carolyn
|
|
|
|
07-31-2009, 11:13 AM
|
#2
|
|
Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
|
Re: Link to Carolyn's TV debut today
Carolyn
Thanks so much for posting the video. I am keeping
my fingers crossed you will get in the trial. You
are a very beautiful person inside and out and deserve
this chance. Sometime you just have to push for what
you want and you are doing a great job. Much love
and light. I am in South Fla. in Naples Nov thru May.
We should meet and chat someday.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
|
|
|
|
|
07-31-2009, 12:23 PM
|
#3
|
|
Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
|
Re: Link to Carolyn's TV debut today
Thanks Pat.
I have been so affraid to talk about this out in the real world. Whenever I mention that I will be in treatment for breast cancer forever people go all "blank" on me. They have no idea what to say. A friend who saw the video was crying hysterically with emotion. I guess because this is my everyday life, it just is what it is. It even makes me sad to listen to my story but it is a hopeful story too. I mean, I got bc at 32 years old and despite that fact I am still around 21 years later. Pretty good... I wish that I could have been NED all of this time but I'll take the 21 years and counting! Hoping for many more years!!!
Thanks for your support and best wishes for me to get in the trial!
Love, Hope, Peace, Carolyn
|
|
|
|
|
07-31-2009, 01:44 PM
|
#4
|
|
Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
|
Re: Link to Carolyn's TV debut today
Carolyn
You brought tears to my eyes....I am in awe of your determination...I hope that I will qualify for the DM1 soon!!!!! You are in my prayers...I admire your strength and persistance......you will get there!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
|
|
|
|
|
07-31-2009, 02:02 PM
|
#5
|
|
Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
|
Re: Link to Carolyn's TV debut today
Hi Sheila,
Thank you. I am in awe of you too. It seems like there is NO shortage of determination from members of this board including you and me. I am so proud to be a part of this board. You have been a great example for me over the years. I have laughed and cried with you on your journey too.
Thanks for your support!
Love, Hope, Peace, Carolyn
|
|
|
|
|
07-31-2009, 02:18 PM
|
#6
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
Re: Link to Carolyn's TV debut today
Shelia and Carolyn,
Both of you are inspirations to me. I want to thank both of you.
Amelia
|
|
|
|
|
07-31-2009, 02:20 PM
|
#7
|
|
Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
|
Re: Link to Carolyn's TV debut today
Awwwe, thanks Amelia. That is nice.
Have a great weekend and keep your fingers crossed for me please!
Carolyn
|
|
|
|
|
07-31-2009, 03:20 PM
|
#8
|
|
Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
|
Re: Link to Carolyn's TV debut today
I would agree with what Amelia said .... you are both inspirations to me as are all my "sisters" on this board.
Carolyn you are a beautiful person and I was so happy to be able to watch this news clip of you. Thank you for sharing it.
Praying only God's best for you and all my "sisters"
Love and hugs,
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
|
|
|
|
|
07-31-2009, 03:37 PM
|
#9
|
|
Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
|
Re: Link to Carolyn's TV debut today
Carolyns,
Thank you for sharing your video. This trial seems so promising. I believe that you WILL get into this trial. You are an inspiration to so many of us here. Sharing your story with your community is brave and I am sure will be an inspiration to them too. I am proud of you.
Lexi
|
|
|
|
|
07-31-2009, 04:04 PM
|
#10
|
|
Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
|
Re: Link to Carolyn's TV debut today
Thanks for sharing the video. I am praying from the bottom of my heart that you do get into TDM1 trials and it works for you!
hugs,
shobha
__________________
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
|
|
|
|
|
07-31-2009, 04:17 PM
|
#11
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: Link to Carolyn's TV debut today
Carolyn, Sheila also shared the link on FB for this and I commented there but really hope you get this trial.
Fingers all crossed for you 
http://www.corpangelnetwork.org/
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
Last edited by tricia keegan; 07-31-2009 at 04:24 PM..
|
|
|
|
|
08-01-2009, 05:14 AM
|
#12
|
|
Senior Member
Join Date: Feb 2009
Posts: 1,526
|
Re: Link to Carolyn's TV debut today
Carolyn
Well done, just saw the video. Hoping that you get on the trial soon.With some luck t-dmi may become more available in other countries like England and Europe soon.
Ellie
|
|
|
|
|
08-02-2009, 12:09 PM
|
#13
|
|
Senior Member
Join Date: Oct 2007
Posts: 1,851
|
Re: Link to Carolyn's TV debut today
Carolyn,
Thanks very much for sharing the video with us. You are a champion for the cause.
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 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
|
|
|
|
|
08-02-2009, 08:13 PM
|
#14
|
|
Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
|
Re: Link to Carolyn's TV debut today
Carolyn,
Your strength and courage are all working for you.
I have all fingers crossed and of course saying powerful
prayers for you.
Never hear no....never give up.
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
|
|
|
|
|
08-02-2009, 08:53 PM
|
#15
|
|
Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
|
Re: Link to Carolyn's TV debut today
Carolyn thanks for sharing your video and story.........I'll be praying you get into the trial!
__________________
xxoo
Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
|
|
|
|
|
08-03-2009, 05:18 AM
|
#16
|
|
Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
|
Re: Link to Carolyn's TV debut today
I just watched the video. Beautifully done; loved seeing you with your son having fun. Great message about living with this disease - very hopeful and inspiring. I hope you get into the DM! trial very soon; I am hoping it will be available to me - and all of us - soon too.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
|
|
|
|
|
08-03-2009, 10:56 AM
|
#17
|
|
Senior Member
Join Date: Jul 2008
Location: Durham NC
Posts: 73
|
Re: Link to Carolyn's TV debut today
Wow, great clip! Thank you for sharing! When do you find out about getting in the trial? Beth
|
|
|
|
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 11:39 PM.
|
Linear Mode
