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Old 02-12-2008, 10:03 PM   #21
Bev
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Location: Alexandria, VA
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Havah, you've been around here for such a virtual long time. We all know the feeling. You have a tough road to hoe and it's OK to feel crappy about it.

Religion thing helps some, but it's not a get out of jail pass.

For me it's a you can't change what's happening but you can do everything you can to fight it. At least you go down fighting.

As others have said though, they're are people here that keep fighting with different treatments. "Someone" promised Cancer control by 2010. You can do it.

Keep us posted. Do reach out if there's a local Her2 gal, otherwise, it's your duty to contact your local cancer center. You're in our thoughts and prayers. Bev
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Old 02-12-2008, 11:01 PM   #22
hutchibk
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Hi all - does anyone know a good counselor or especially dynamic support situation in the Minneapolis area for cancer patients in distress?? Please post and/or PM me if you do. I am doing some research.
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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 02-12-2008, 11:18 PM   #23
Jean
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Havah,

Give your treatments time to kick in and do their job. As the others have posted who have had liver mets "it can be done" and you can achieve NED also! Of course you are scared, each and every one of us on this site has the same fear no matter what stage.
But that fear cannot be allowed to force us to give up or give in. As Becky said so well, you have work to do and your job is to
work hard to get back to NED.

We are all here to support you and everyone has given you
great advice, but maybe contact with a professional would give you much needed comfort, please consider reaching out to a nearby professional. You do not have to be alone.

Please update us on your treatments.
Kind Regards,
Jean
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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

Last edited by Jean; 02-12-2008 at 11:29 PM..
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Old 02-13-2008, 12:51 PM   #24
lilyecuadorian
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Smile

Havah ...I find this on a airplane magazine : " courage" sometimes is a little voice in the end of the day saying ...." I will try again tomorrow " and put it everything in the Lord hands ...that is my philosophy
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 02-13-2008, 03:45 PM   #25
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...
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Exclamation




I remember thinking I was dying. That my extinction was imminent. That my breast cancer had metastasized and spread throughout my liver in too many places to count. Tumors everywhere. What I had was inoperable and incurable and I would be on longterm chemotherapy for the rest of my life. What could be worse? Nothing. I sobbed, wailed and wept, grieving over my demise, the end of me.

I had rallied from my original diagnosis, mastectomy and reconstructive surgery (which was far more major than I had anticipated). I'd come back to life after eight months of chemotherapy (which left me weak and weary, shuffling my feet and I slowly managed to walk, feeling like I had the worst flu ever, every single day, feeling woozy and about to pass out often, feeling whipped and wiped out, and losing thirty three pounds, having no appetite). How could I do it again? Fourth stage (out of four) with little chance of recovery. I was doomed.

Friends called and offered me names of top liver surgeons in Manhattan, trying to help as best they could. I called. The first receptionist told me that doctor only dealt with colon cancer into the liver. Okay, not for me. Wow! They have doctors with such specific specialties? I was aghast. The next receptionist told me -- YOU HAVE BREAST CANCER INTO THE LIVER. YOU DO NOT HAVE LIVER CANCER! YOU DON'T WANT LIVER CANCER. IT IS BETTER TO HAVE WHAT YOU HAVE. YOU HAVE BREAST CANCER. INTO THE LIVER.

Okay then. I was reminded that -- it can always be worse. I had thought I now had liver cancer. I wasn't informed enough to even understand my diagnosis. I quickly rectified that. And -- I began tossing the bad statistics aside and focusing on books that empowered me. I have a list if you're interested.

I began to dwell in possibilities anyway, consciously choosing to ignore the realities of my condition. I sensed that I could be defeated if I concentrated on what happened to most people. I wanted to be in the little group that survived. I had to start thinking outside the box.

In our darkest hours, we can choose to become bitter and defeated. Or, we also have the ability to choose to become more than we were yesterday. To dig deep within ourselves and come up with some radical new realities we weren't previously aware of. We can awaken to miraculous vistas. And sacred summonings. I am not a religious person, but I have become spiritually enlivened.

I began to use the power of my thoughts to call my desired destiny to me. I believed what I read repeatedly. The energy of our thoughts goes out from us on frequency waves of varying vibrations. Positive thinking travels on higher, faster vibes. While negativity emanating from us leaves us on lower, slower waves. AND THE UNIVERSE BOTH SENSES THE ENERGY WE EMIT -- AND RESPONDS -- IN KIND. So, we have the power to draw positive manifestations of our thoughts to us. OR, we can unwittingly magnetize negative realities to become our own. WE ARE EACH PERSONALLY EMPOWERED.

KNOWING that I had the power to free myself from being caught in an unpredictable abyss of misery was exquisitely electrifying! My crisis became transformed as did I. Life, for everyone, is a bout with persistent unknowns. I was not as unique as I thought in this regard. So, I explored the possibilities, choosing one road over the other, using my power of choice given to me as my birthright. I began to script my thoughts, arduous though that is. Not only did I realize I was informing the Universe of my clear Intentions and passionate Expectations, but commanding my body to respond as *I* directed.

Yes, staying alive requires constant attention for some of us, but it can be an exhilarating venture as we confront the riddles of Being, I "perpetually imagine sublimities beyond reason" as author Eric Wilson expresses it so well in Against Happiness. I AWAKENED TO THE IDEA THAT WHAT WE THINK DETERMINES HOW WE FEEL AND HOW WE FARE. And, that we have the capability to rewrite our tormenting thoughts, for our benefit. I chose not to be taunted and tortured by my fearsome, uncertain, fragile, insecure thoughts of gloom.

This is what I wish all of us to discover on our own. To personally empower each and every one of us! Sending healing, loving energy...
Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 02-15-2008, 08:35 AM   #26
Alaina
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Thoughts for you

Hello there,

I can only imagine how you are feeling right now. You said you are alone, does that mean that you dont have a husband, children or parents living with you? I know sometimes with friends they are not able to understand the pain etc.

Well, here are my thoughts. You are not alone ever because you have God, all His angels and saints. He created you specifically and loves you more than any person ever could or will.

When I was diagnosed at the age of 35 with stage IV, IBC, I was devastated. My children were 1, 3 and 3. I just could not believe I was going to die and not get to raise my babies. A St. Theresa prayer was sent to me and I said it for all cancer patients. A few days later I got the most beautiful roses. I then looked up St. Theresa because I had rememebered that she will send you a rose if she can help you with your prayers etc. Well, I read about her and how her life was changed forever at the age of 4 when her mother died of breast cancer. For me, it was a sign.

Here is what I would ask you to do. You have nothing at all to lose. Go to a place where you can be alone and peaceful. Get down on your knees and ask God to come into your heart. Tell Him you need him and that you dont know where to start and ask Him to show you. You are His child and your requests WILL NOT fall on deaf ears. Ask Him for peace and guidance. That is all you have to do, take the first step.

I wish you well in this journey. Remember, new meds are being tested as we write and no one knows when the cure will be found. Have hope!!! Have faith!!! Love, your sister in this battle, alaina
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Old 02-15-2008, 11:58 PM   #27
harrie
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Hello HavahJ,
You are NOT alone and I am sure everyone of us has had our time on that roller coaster ride.
I wish you a HUGE exhaled sigh to get rid of some of that stress.....remember to breathe HavahJ.....at this moment that is my one advice that I happen to think of.....breathe, think about your breathe, and breathe out some of those dark thoughts. That is a good beginning....
You are not alone.....
harrie (maryanne)
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 02-16-2008, 03:49 PM   #28
harrie
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HavahJ,....hi, it's me again!
HavahJ, one thing I have learned from my experience with br cancer is to try my best to not worry and think ahead too much. It is all to easy to do, for me especially at night when I am in bed. I have come to the personal conclusion that many times our worries concerning the future, whether it be about our health or other family or personal matters are not worth the acute concern. We need to keep the "what ifs" under control. Worrying about those situations that may or may not happen in the future can create unnecessary stress and it can mask the joy and peace of what is happening at the moment. There are many everyday simple joys that go unnoticed, and what a shame they are not gratified when we have them here and now.
It is very important to be able to balance the "being and doing" here in life. If you can master that, if you can discipline yourself to weed out and let go of those things that are not to be dealt with at this time, I think you will find more comfort, peace and joy.....and again...remember to breathe....
Best regards,
Maryanne (harrie)
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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