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Old 11-23-2010, 11:07 PM   #1
Adriana Mangus
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Location: California
Posts: 668
Hi from Adriana

Hi everyone,

A quick update on the TDM1 trial.

I have completed four cycles--last one 11-16-10. On the 17th I had a Cat-Scan and Echo.

I will be seeing the oncologist December 7th @ Highland for a follow-up.

I wanted to wait until then and see if this "wonder" drug is working, but it's been almost 3 months since my last visit.

Please forgive me for not sharing earlier with you about this new development in my life, but some of you might remember that back in August I was having a real hard time deciding whether to cancel my New England cruise, --I had an uneasy feeling, but couldn't figure out what it was. I decided to cancel and shortly after my mother passed away.

A month later I lost my adorable maltese Harley to a coyote--I live near a boulder/chaparral,- - he was barely 6 months old. I had no desire to do much, let alone sit at the computer. Again, please forgive me. I feel I have been selfish for not sharing this important news with you, my friends.

I shall return after the December 7th appointment in Highland.

In the meantime, please have a wonderful Thanksgiving Day with your loved ones. And yes, eat a lot, indulge on desserts, and have a drink or two. Why not!!

Much love to you all,

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
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Old 11-24-2010, 12:40 AM   #2
Chelee
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Re: Hi from Adriana

Hi Adriana,
No need to apologize...you've had alot thrown at you. Losing your Mother and your darling dog was a major blow while dealing with your own medical issues. I'm just glad you felt up to checking in with us now. It's always good to hear from you. So you now have four cycles of T-DM1 under your belt...I'll be keeping positives thoughts that it's kicking cancers a#$.

Hopefully the sides affects have been tolerable? I will be looking forward to hearing your results after the 7th...until then you have a very HAPPY THANKSGIVING. Take good care of yourself.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 11-24-2010, 06:48 AM   #3
Delaney
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Red face Re: Hi from Adriana

Adriana,
welcome back and heres hoping this treatment works very well for you. Best wishes.
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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 11-24-2010, 09:33 AM   #4
caya
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Re: Hi from Adriana

Thanks for checking in Adriana. I'll be keeping my fingers crossed for your appointment on Dec. 7th.

all the best
caya
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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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Old 11-24-2010, 10:25 AM   #5
ElaineM
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Posts: 3,142
Wink Re: Hi from Adriana

I am hoping that it is just going to take awhile for the T DM1 to kick in. Maybe the body has to absorb enough of it before it starts to work well. We live in a time in history when immediate results are expected. Some medicines take awhile to kick in. Maybe it will start doing that when you have your next treatment.
Hang in there. We all have our fingers crossed for December 7th. In the meantime take good care of yourself.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 11-24-2010, 10:17 PM   #6
Paty
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Location: Cordoba, Mexico
Posts: 672
Re: Hi from Adriana

Dear Adriana,

Thanks for posting and let us know how you are. I am sorry you have gone through so much pain dear. Great to hear you are on the TDM-1 trial, please keep us posted on how things are with you. I will keep you in my prayers hermanita (sister). All my love,

Paty
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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 11-25-2010, 06:59 AM   #7
Mary L
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Posts: 297
Re: Hi from Adriana

Good morning Adriana. Sorry you are going through so much right now. I know it's hard. I hope you are able to have a great Thanksgiving and do have a drink or 2. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 11-25-2010, 12:20 PM   #8
StephN
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Location: Misty woods of WA State
Posts: 4,128
Re: Hi from Adriana

Dear Adriana -
Sounds like you are feeling otherwise pretty good, other than some heartache to deal with.
I hope good news from the new trial will help balance that out. You have enough stress without these additions one on top of another.

I have a friend up here who also goes to Highland and is having some great results so far.

Wishing you many joys of the holiday season.
__________________
"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 11-25-2010, 03:08 PM   #9
tricia keegan
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Location: Ireland
Posts: 3,463
Re: Hi from Adriana

Adriana, my heart broke for you on reading of the loss of your pet, I'm so very sorry and know how much that hurts.

Sending (((((hugs))))) and hoping the heartbreak you feel right now on his loss is made easier by good news on your own health.

Tricia xx
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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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