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Old 08-24-2010, 05:39 PM   #1
Adriana Mangus
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News from Adriana

Hi,

Hope everyone is doing well.

1. After going back and forth, first with my medical condition and second with some uneasy feelings I had but couldn't explain, the cruise was cancelled.

It turned out to be a blessing from the sky. My mother was admitted to the hospital Thursday August 12 for a middle stroke, it turned out her left leg had no circulation and it was turning blue. We --brothers and sisters had little time to react to what ensued after her first days in the hospital. The medical internist decided that it was better to have my mother's leg amputated. We struggled with the decision but had no choice nor time but to consent to the procedure. It was either leave it alone, or let the infection take over her entire body--wich it would have been too painful and horrendous for anyone to witnessed. Right after surgery she went into cardiac arrest, and a few hours later she was gone. My mother was buried Friday, August 20th. Please say a prayer for my mother, her name was Fernanda Garcia.

2. Now this. After waiting for about six weeks, Kaiser approved my participation in the TDM1 Trial.
I'm greatful to have finally have been given the ok by the Insurance company. The first cycle will start September 7th. I'm also asking for prayers for me, for the drugs to work in my body and also to get a relief from the harsh chemo drugs I've been receiving from the last seven years.

I know I'm asking too much from you, but under these circumstances, I know you can understand my needs.

I will keep you posted as the trial progresses.

Much love to you,

Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane

Last edited by Adriana Mangus; 08-24-2010 at 05:44 PM..
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Old 08-24-2010, 05:45 PM   #2
whatz
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Re: News from Adriana

Oh Adriana,
I hate you have so much on your plate. My heart goes out to you over the loss of your mom. I'm soo glad you "listened to your gut" and did not go on your trip. Yes, of course, I'll keep you in my prayers.
So glad you got in on the trial. At least one ray of sunshine there.
__________________
4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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Old 08-24-2010, 05:53 PM   #3
Barbara H.
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Re: News from Adriana

Adriana, my heart goes out to you. You must feel completely overwhelmed. Please know that my thoughts are with you, and I'm so sorry that you lost your mother so suddenly.

I'm thrilled that you have been accepted to start T-DM1. I was on it for two years, and it is truly a miracle drug. If I hadn't developed a side effect I would still be on it

Again, I am thinking of you.

Barbara H.
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Old 08-24-2010, 05:59 PM   #4
Yorkiegirl
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Re: News from Adriana

Adriana I am so sorry to read about Mom's sudden passing. Your family will certainly be in myh prayers.

I'm glad to hear you were approved in the trial. Many good Vibes and prayers will be going out to you as you start the T-DM1 trial.
__________________
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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
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Old 08-24-2010, 06:43 PM   #5
Becky
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Re: News from Adriana

Dear Adriana

You know you are never asking too much of us to think and pray for you and your family.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 08-24-2010, 06:57 PM   #6
StephN
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Re: News from Adriana

Dear Adrianna -
With heavy heart I see this news about your mother. I spoke with you just the day before the surgery and you did not seem all that worried. We just never know.

On the other hand. SUCH GREAT NEWS for TDM-1. Something had to give - the dam had to break.

Life is very sweet and sour. All my best coming your way.
__________________
"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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Old 08-24-2010, 07:46 PM   #7
Hopeful
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Re: News from Adriana

Adriana,

I am so sorry to hear of the loss of your mother. Please take comfort in the knowledge that she did not suffer.

I am very happy for you that you got into the TDM1 trial. You and your family are in my thoughts.

Best of luck to you,

Hopeful
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Old 08-24-2010, 08:29 PM   #8
Ceesun
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Re: News from Adriana

Adriana, I am so sorry to hear of the loss of your Mom. My thoughts are with you and yours. My very best wishes as you begin this new trial--success is right around the corner, dear friend. Ceesun
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Old 08-24-2010, 06:37 PM   #9
vlcarr
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Re: News from Adriana

Will say a prayer for you and your Mom. So happy you are going to be in the trial.
__________________
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Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
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Old 08-24-2010, 08:38 PM   #10
lexigirl
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Re: News from Adriana

Dear Adriana,

I am very sorry to read that you lost your mom. Please know that you and your family are in my prayers.

I am happy and hopeful as you begin the new trial. Prayers for all to go well.

Hugs and Prayers,
Lexi
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Old 08-24-2010, 08:52 PM   #11
ElaineM
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Wink Re: News from Adriana

I am so sorry to hear about your mother. I am glad you postponed the cruise, so you could be with her during her illness, surgery and passing.
I am however happy to hear that you have been accepted to the T DM1 trial. I hope it turns out to be your magic bullet.
I think you were meant to wait until your health is better to go on the cruise. Just think how much more you are going to enjoy it when you are in better health.
Take good care of yourself. I have my fingers crossed for your success in the trial.
__________________
Peace,
ElaineM
12 years and counting
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Old 08-24-2010, 09:18 PM   #12
Paty
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Re: News from Adriana

Querida Hermana,

I am sooo sorry to hear you have gone through so much pain. I am sure praying for your mom's rest and for your success with the TDM1 trial, I just wish I could give you a real hug. Please no te sueltes de la mano de Dios, yo sé que con mucha fé, tenemos que superar todos estos malos momentos. Dios te bendiga y te dé entereza para salir adelante amiga. Estoy contigo en pensamiento, cuÃ*date muchoooo. Love,

Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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Old 08-24-2010, 11:09 PM   #13
Kavy
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Re: News from Adriana

Adriana,
I am so sorry for your mom's passing. All those problems you had before the cruise were warnings, I am glad you cancelled it and could be with her. Your mom, you and your family are in my prayers.
On the other hand, I am happy you were approved for the trial, I am also thinking about joining it. I will be praying for you that TDM1 will be your miracle drug.
A big hug,
KarlaV.
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Old 08-25-2010, 12:16 AM   #14
Jackie07
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Re: News from Adriana

Adriana,

So sorry about what happened to your Mom. Please concentrate on your trial and know that we are praying for you and your family.
__________________
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Old 08-25-2010, 04:51 AM   #15
Sheila
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Re: News from Adriana

Addie
I am so so sorry about your Mom...what a blessing that you listened to your heart and didn't go..you were there for her...the TDM-1 news is also wonderful...prayers have been answered for you...it is sad that our lives are so bittersweet at times...we live with gains and losses each and every day. You are in my prayers that this will be the magic drug for you, and that your Mom is watching over you from above as you begin this new treatment. Much Love!
__________________
"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
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Old 08-25-2010, 09:40 AM   #16
Delaney
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Re: News from Adriana

Adriana,
Very sorry for your loss. Will say a prayer for your mother and also a prayer that the TDMI will be the miracle drug for you.
__________________
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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Old 08-25-2010, 10:31 AM   #17
Jean
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Re: News from Adriana

Dear Adriani,
My heart aches for you. I am so sorry to read about your Mother. Will keep her in prayer and you are never asking too much....on the contrary.

For your good news, starting the TDM1 - I am happy for you. Please keep us posted. Will think of you and say special prayers for you on the 7th that all goes smoothly for you.

Try to take some extra time to rest for yourself.
You have been under so much stress.

Sending you best wishes and many 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
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Old 08-25-2010, 10:35 AM   #18
tricia keegan
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Re: News from Adriana

Adriana I'm so very sorry for your loss and will remember you all in my prayers.

I'm glad you've been approved for the new drugs, who knows, maybe your Mom had a quiet word for you to make this happen
__________________
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!
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Old 08-25-2010, 11:23 AM   #19
Patb
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Re: News from Adriana

Feelings from the heart, you knew you should stay
and you were there for your mom and now you
are starting the new trial. So sorry to hear about your
mom and my prayers are with you as you start a new
treatment. Keep us posted, we care.
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.
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Old 08-25-2010, 12:15 PM   #20
caya
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Re: News from Adriana

Sorry Adriana on the loss of your mother.

I am so happy that you will be able to enter the TDM1 trials. Hopefully this will be the magic bullet for you.

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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