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Old 06-01-2007, 02:10 PM   #1
Adriana Mangus
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Join Date: May 2006
Location: California
Posts: 668
Lightbulb Oprah- please respond..

Whatever happened to this project? Is it something we are still interested in doing. I just came across this posting. Had no idea. I wrote to Oprah over a year ago and suggested for her producer to put a group of us together so that women-especially the newly diagnosed- know that there is hope. I have walked this road more than once, we're the face of hope, compassion, bravery, assertiveness, etc. etc. Please let me know.

We can always put together a video, this is an idea, we introduced ourselves no more than 3 minutes each., begin by stating your name, year of diagnosis, treatments, recurrences if any etc. then we will circulate the video among those who want to participate, once completed we'll send it to Oprah!!

Sisters, what do you think?? I'd love to go to Chicago and meet a lot of our sisters who live in the South, East, and Midwest,etc. what a wonderful idea.

Please respond.
__________________
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 06-01-2007, 02:25 PM   #2
hutchibk
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The project got a little side-tracked when the site went down. And, I have been in two hells.... 1) house buying hell (we close on Tues) and 2) starting Tykerb/Xeloda/what to do about the brain mets hell. And I have been trying to work and will be traveling a little the next couple of weeks. After the 3rd week in June, I think I can sit and devote a little time to it. In the meantime, keep posting girls! Lets post ideas for a proposal. In the meantime, I will work on getting the name of the person at Oprah that my friend dealt with and see if we can get our foot in the door.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 06-01-2007, 02:37 PM   #3
Andrea Barnett Budin
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Wink Extra Prayers For Brenda

Brenda, honey -- you blow me away! What you're dealing with, all at the same time -- YOU ARE WONDER WOMAN! I'd think it can't be done, but here you are doing it all. Stay strong, positive and determined. May the brain MRI go well. HAPPY MOVING! What hell is that?! Stress is your middle name. May you somehow find moments of peace in the coming weeks. I will say extra prayers for you. You deserve a badge of courage, a medal of honor and 13 platinum gold stars. (13 is my lucky #. I will share with you.) Several times a day, go within, in silence, and connect with that Something that is the True You. It is your Spirit. It wants what you want. It knows, beyond knowledge. Follow your heart. Listen to your Inner Voice. And talk to your body! Tell it to get it's act together. Command it to HEAL. BE WELL. HEALTHY. I do this every day still (since '95). I stay connected to my Soul. I swear it is a life-saving, life-changing experience. Sending you loving, healing energy... ANDI
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Old 06-01-2007, 03:12 PM   #4
hutchibk
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I am not as amazing as you might think... I do allow myself alot of down time. Just can't afford very much for the next couple of weeks. Luckily we don't have to move right away. Our lease isn't up until July 31. It's just trying to get the danged thing closed has been a headache, but we are almost there!
My counselor is teaching me meditation... it is so lovely. I am on the path to serene, but it is just a little out on my reach for the time being.
'om namo guru dev namo'
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 06-01-2007, 03:32 PM   #5
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Wink Still A Superstar

Brenda, I read your signature/med history. You have been through a lot and you should be proud of your personal growth, the courage and strength you've uncovered within yourself. I meditate daily. I go deep inside myself, in silence. Sometimes Andreas Bocelli's Romanza helps me float up to a cloud w/my eyes closed. As I go within, fully relaxed from my toes inch by inch up to the top of my head, including every little aspect of my body -- I then imagine myself as weighing about 2,000 lbs. From that I imagine myself as a feather and with that I float up and look down at myself. As I do this, I become SOMETHING OTHER THAN THE SELF I KNOW. I become connected to my Spirit. I re-identify myself. I am more than a mind and a body. I AM BODY, MIND AND SOUL. I am truly a Soul. We are each Soul.

I have come to see others as a Soul. To treat them as a sacred being, as they truly are. I try to talk to their Higher Self, even when they are acting as their basest self. And the energy changes almost immediately.

You are energy. Your thoughts are energy. They go out from you on varying frequency waves -- into the Universe. They vibrate at a higher rate when filled with positivity (love, joy, serenity, belief, compassion, awe, gratitude). They vibrate slower when filled with negativity (anger, resentment, stress, the inability to forgive, remorse, sadness, fear, blame). THE UNIVERSE SENSES WHAT YOU ARE TRANSMITTING -- AND RESPONDS IN KIND. So what you think all day, the composition of the thoughts you dwell upon -- draws equal energy to you. Believing in your ability to call wellness to you fills you with thoughts that are pure and positive. Then you feel all the positive emotions those thoughts evoke. And the Universe sends you what you send it! Positivity draws more positivity. Negativity begets more negativity.

Remembering this as thoughts occur keeps you on track, to call your desired destiny to you. I was dx in '95 at age 50, post menopausal. 4th stage. Multiple mets to the liver in '98. Her2+. Poor prognosis from the getgo. But I was determined to endure whatever I had to (mastec/reconst/chemo then mets and Taxotere and the godsend, Herceptin, which I remain on since '98. You too can be a miracle. With the power of your thoughts. And through your meditation and your finding your True Self in meditation. You are a radiant Soul. Beautiful.

Tell me what 'om namo guru dev namo' translates into. It is a mantra? Sending you loving, healing energy... ANDI
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Old 06-01-2007, 03:54 PM   #6
mrsd
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Join Date: Feb 2007
Location: Nova Scotia, Canada
Posts: 40
A BIG thanks to all here who visit and post, I mostly visit as you can tell. Maybe the way to get Oprah's attention is to post a link to this website? We need people to know that we are living with cancer, and I might add we are doing it very well!
__________________
Intial Dx Sept3,2002, age 39
Masct/ Sentinel Node Biopsy Sept 11,2002 node negative
ER/PR- Her2+++, grade 3
Started AC Chemo Nov 2002, 4 rds
2003 NED
May 2004 reconstuction, saline and later silicone implant
Aug 2006 Dx recurrence, lymph nodes chest/lungs/sternum
Dec 2006 Herceptin q three weeks
May 2007 bone mets to sternum
June 2007 aredia for bone mets
June 2007 radiation to sternum X 5
June 2008 slow progression of lung met, all other mets NED, continue Herceptin, Aredia, add Xeloda
July 08 Stopped Xeloda, severe side effects from the drug, but it did a fantastic job after only 12 days at least 50% reduction
Feb 09 Started Navelbine with herceptin, slight progression in lungs.
July 09 - Nov 09 had a Navelbine holiday...
Nov 09 back to Navelbine, Herception
Feb 10, lungs have improved but 4 small lesions on liver, started Taxol, Herceptin....
Taxol not the magic drug for me
Continuing Herceptin,Aredia,and adding Xeloda once again..reduced dose
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