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Old 02-18-2017, 03:14 PM   #1
Andrea Barnett Budin
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ANDI'S STORY 1995 - 2017 and still going strong

My life was in an especially splendid phase. My two daughters were grown, one married and a Law School graduate, the other following the family tradition, now also graduating Law School. My little girls blossomed into such beautiful, lovely young women. Bright and funny, charming and genuinely caring. HOW TRULY BLESSED I FELT. I had the good fortune of spending the winter at our "other" home, our condo in Boca, which is as close to paradise as one can get on earth. I returned to New York to finally try to sell my beloved home on Long Island (filled with twenty six years of cherished memories). I wanted to move to the area I'd always dreamed of being able to somehow afford, closer to the city, where my husband worked. Cutting his commute by hours a day and making a fresh start. Paul and I were busy enjoying our freedom (but for our precious puppy who was getting on in years). Family gatherings were each remarkable and so very special. No longer plagued with sibling bickering and the need for my constant mediations. Now we laughed late into the night around the kitchen table (that had lived through various incarnations in our family). It held the energy of each of us, throughout numerous decades that had so quickly slipped away.


I had turned fifty and was entering a grand stage, despite the incessant hot flashes that stalked me long before and far beyond menopause. We sold our home in Dix Hills in just ten days. I found a fabulous condo in Manhasset that was being foreclosed. Sad for the owner, great for Paul and me.We outbid all others and this dream of a home was ours. We signed two contracts in one week. Life was so sweet...


Meanwhile, I'd moved my late August mammography up two months. I had this strange general hardness of my left breast. NOT A LUMP. What could it be? It was something that needed attending to. I was keenly aware of this, way in the back o my mind, for months. Apprehension was undeniable, but I told myself it couldn't be cancer. *Other* people got cancer. And, it wasn't a pea or a marble, after all. It was an overall dense sponginess. Turning fifty had brought many unwanted changes in my body.


After the mammography, the radiologist did a sonogram (which was new). I often had to go for additional pics as my breasts were dense. I now believe the vast majority of women have dense breasts. The radiologist looked very distressed. I sensed that she was quite agitated and anxious as she seemed to rush into the exam room. I hoped it was because her day was super busy. I tried not to take it personally. Then, she abruptly told me to get dressed and meet her in her office. Once there, both seated, she locked eyes with me and clasped her hands on her desk. With her eyes still fixed on mine she blindly moved her stack of papers aside with her clasped hands. YOU NEED A BREAST SURGEON, she began with a heavy sigh and a heaving chest. Her eyes remained locked on mine, her hands folded tightly on her desk. Maybe it's a cyst, I offered hopefully. NO. What you have is -- a solid mass. The dramatic pause was noted by me with alarm. It appeared to be a dire situation.


I kept thinking -- is a solid mass the same as a tumor? Even so, aren't there *benign* tumors? I did not ask, afraid of the answers. I wasn't quite ready. She offered to call a great breast surgeon for me. I could not speak. I nodded. I'd heard the name as I'd asked friends who often had things found in their breast that required biopsies. I never had such a thing. Never. She called the breast surgeon at his office but the message said the office was closed and would not reopen until Tuesday. It was now five o'clock on the Friday of the Fourth of July. She offered to call him at home. Again, I could only nod, I could not seem to form words. She described my situation and it horrified me. What I overheard was very serious I could tell by her tone and of course her description. The surgeon agreed to open his office Saturday morning just for me, after hearing her detailed description of my situation. This doctor opened his darkened office just for me! I was blown away by that factor alone. Obviously, I was a walking emergency. After examining me, Paul and I met with him in his small private office. He confirmed that I had a “large” TUMOR in my breast that had to be removed. It was so large in fact, chemotherapy before surgery to reduce the size would be fruitless. It was so large, a MASTECTOMY would be needed regardless of the pathology report!! His voice was gentle, professional and full of compassion. Years of working in this delicate area had not inured him. His caring and concern were in his face, in his body language and hand movements. He had looked at my xrays which the radiologist had told me to take to him. He had examined me. He said what we were looking at was most likely breast cancer. I sat calmly or perhaps I was in a kind of catatonic state. As we sat on the other side of the desk, at one point Paul asked specifically --How certain are you? I awoke from my fugue and turned to hear the answer I dreaded. The doctor hesitantly related that he was -- 99% certain the tumor was MALIGNANT.


It took a millisecond for me to move from total shock and the inability to utter a single word to realize emphatically that I WANTED TO LIVE. Above all else, I intended on surviving! I looked at my husband's face. It was so telling. Nearly thirty years of being together at the time, we could read each other well. He looked so grim. As if he were already in mourning! He appeared overwhelmed with hopelessness and sadness. Seeing this, I was motivated to finally speak up. I smiled at Paul with all the love I had for him and said in no uncertain terms -- Don't call the funeral home yet. I plan on living! The doctor laughed and leapt at the opportunity. On the edge of his seat, his hand high in the air, he said, Good for you. There's no reason to think otherwise! Paul let go of his grip on pain and sorrow for the moment. The doctor and I had startled him back to life.


At home, Paul asked me, But what if it is malignant?!, as we both paced in juxtaposition to one another, from one end of the house to the other. Each of us was lost in silence, replaying the events of the last two days. He was obviously devastated. In answer came my words, reflecting my thinking. I said calmly, Then, I'll deal with it! He nodded, and repeated what I’d said. Almost. Then, we'll deal with it, he muttered as he continued his pacing in the opposite direction. I had just heard one of the most beautiful expressions of love I could possibly imagine. He instinctively had included himself in the battle to save my life. WE would prevail!


I had always been staunchly resistant to ever agreeing to having a breast removed. I felt these features identified me. The tiniest hint of cleavage was a part of my look. My breasts were so sensually pleasurable and a part of love making. But in a nanosecond I found myself saying with urgency -- Get it out! As soon as you possibly can. I want the cancer cut out of me, no matter how you have to do it. I knew immediately that I would still be me. A girly girl to the end. Makeup, earrings and femininity went with my smile – projecting my deepest Self. I would simply have to recreate myself with fresh flair.


I began meditating and directing my body to heal, from that night forward. The breast surgeon's apologetic prediction required my utmost focused energy, I knew. I began reading books Paul quickly purchased on this dreadful disease, believing knowledge is power. I could ask better questions armed with information no ordinary person ever needed to concern themselves with, unless... I rejected the grim statistics I read immediately, refusing to become an unknown percentage of defeated yet brave warriors. Who are Life's victors? -- popped into my head. I'd been a student of this exact subject since early childhood, struggling to survive a rage-filled home as a helpless, defenseless and terrified tot under tyrannical rule. I'd always paid attention to the answers when the question was asked -- Why do you think it is YOU survived and so many did not? Why do you think YOU won (the race, the gold medal, the contest)? What did you do differently do you think? I stopped whatever I was doing and became riveted, even as a young child. I needed to know. To learn!

The common thread? ALL WINNERS, and the losers as well -- KNEW the outcome. They could see it, feel it and believed in it with every fiber of their being!!! I always KNEW I would win. I dreamt about it. I had this vision… Or, I just KNEW I wasn’t going to win. I was doubtful from the start.


WHAT YOU THINK ALL DAY, WHAT YOU BELIEVE WITH ALL YOUR HEART AND WHAT YOU *KNOW* DETERMINES THE OUTCOME. I'd also been a proponent of the reality of the phenomenal mindbody connection. I KNEW that you could direct your body to respond, to heal . I had learned to do this after years of constant back pain that at times became immobilizing. I had passed a kidney stone the size of Texas that was stuck in my urethra. It took me ten weeks of consciously dwelling upon achieving my goal. My tools were my thoughts, and my image of the route the raspberry of razor-sharp points had to take to exit (as shown me by the urologist with the plastic figure of our innards that sat on his desk). My personal experience reflected what had resonated from the moment I first heard about the link on the Public Broadcasting Network in the '70's. I'd seen prestigious studies and stories validating this truth, and always believed that even with cancer you can consciously choose not to buy into the mob mentality of fear that is generated from the very utterance of the whispered word -- cancer. I have long believed that we each have the power to choose instead to claim and embrace our personal empowerment. That this is humanity’s birthright. We have the ability to rally all inner and Universal forces to do the impossible!


Living half a century had brought me some wisdom, many survival skills and invaluable Life Lessons. It all had to happen for a reason. Even after my metastases three years later, and finding that I was 80% positive for the newly discovered and highly aggressive HER2 gene, I saw the good news. Herceptin was then in clinical trials and it was the *smart bomb* that would target the defective gene and stop it from overproducing a certain protein. This bad gene was responsible for 20% of breast cancer. (The medical researchers are still learning about how to get control over what causes the remaining 80% of breast cancer. Tykerb and various combinations of known chemotherapy drugs are working for those patients, once they find the perfect recipe just for them.)


Since 1995, I began to grow even more Spiritual in my philosophy of Life. I now have a heightened awareness that brought along new vistas and previously unseen perspectives. Priorities quickly rearrange themselves when you are diagnosed with cancer. You begin to see the sublime in the ordinary. You quickly see what truly matters versus the silly stuff you thought was so important before. You see how blessed you are. How big the little things are. You cherish each relationship all the more, fearing the loss of it. You see the beauty of the world that passed you by before as you were hurrying along engrossed in your daily activities and responsibilities. You are more open to seeing the power of using guided imagery and feeding your mind unshakeable positivity. By scripting your mental dialogue you can alter your fate! What you think all day determines how you will feel emotionally, as it predicts outcomes!! Even against all odds. Your mind just needs to be rebooted, reprogrammed and refreshed. The opportunity to do this comes with major crises. A portal opens and you are afforded a unique entry into a wondrous and new way of being and seeing.


Yes, I had moments that I contemplated if I'd ever live to see my first grandchild born. I now have five grandchildren!

Deep down -- I KNEW I could do it! Still, there are times I am sent reeling, as I dare to schedule an appointment six months in advance. Then I regain control of my fear-riddled thoughts. And I adamantly refuse to allow such terrifying concepts to manipulate me and play games with the quality of my life. I plant myself firmly in The Now. I will not forfeit a single day to wallowing in self-pity. I believed all along that I was lucky. It could have been so much worse! Each day, and especially in shaky moments, I command my body to remain STABLE. To HEAL. And, BE WELL. I KNOW my body hears everything I think, or whisper. I envision myself far into the future, in vivid detail. I can feel the joy, surrounded by my family and Universal love (which we each have the opportunity to open to). Who knew??

As I watched my first baby granddaughter I also saw herstanding on the dance floor at her Bat Mitzvah (at the age of 13). We are all standing, applauding and clapping to the music. I will be there. That time has come and I now plan on being at her wedding one day. She is now 20 years old!


Being diagnosed with fourth stage breast cancer is daunting, I admit. How many stages are there?, friends asked. At first, I could not speak. There are only 4 stages. There is no 5th stage. Death comes after stage 4. Still, I learned to live in joy despite my poor prognosis and its ominous threats to my well-being. Less than a 15% chance of surviving 5 years, I read. I immediately vowed to be among the Survivors with each day. I live with the serenity that comes with the certain KNOWING that I am personally participating in healing my body and keeping every malignant cell that might be thinking about striking stunned into submission. With each day, one day at a time, I call my desired destiny to me. Others were amazed by what they called my courage. I felt it was my stubborn, unconquerable determination and faith, my clear Expectation and Intention that carried me through the fear. It is living AS IF my desired destiny has been ordained and I await it's arrival..

I am a being of energy. I stand as a power station emitting specific signals that are responded to, by others and by the Universe. I do not submit to having toxic poisons infused into my body. Chemotherapy has been my ALLY in my fight for Life! The toxicity of negativity is forbidden. It, along with the expertise of my doctors and surgeons (my collected *team* of second and third and fourth opinions), my attorney husband’s increased education in the study of breast cancer and all its potential magic bullets, and my attitude, my intentionally indoctrinated thinking and visualizations, my moments of tranquil meditation and all day commands from my mind to my body -- would all come together and vanquish the foe! We were unstoppable.


Now 22 years later, I still live consciously OPEN. My heart is filled with something that I can only describe as pure Universal Love. I have learned to become a vessel for love. The Universe is infinitely steeped in this divine energy. I carry it wherever I go. I offer it to all I encounter readily. I hug more, longer and tighter, with all my Soul. I seek to understand more. I am gentler, kinder, more giving, more compassionate. I say -- I love you -- more often. And I hear it said to me more frequently than ever before (even from relative strangers.) It just seems to evolve in reaction to my energy.

I learned to connect with my Spirit, to consciously align myself with the Essence of who I truly am. I now recognize that we are each a Soul. A Spiritual Being, with a mind, that inhabits a body, having a human experience. We are each so much more than we ever thought we were. We are each so much more powerful than we know. I am told that my face reflects the radiance of my Spirit, as people stare at me enviously. How do I get to be you? I want that. I know what they want is to find their True Selves. I feel joyful despite, and because of, all the unwanted realities of my life. They have enriched and enlightened me, and catapulted me to spectacular awakenings that were simply unattainable before breast cancer.


I have lived through 8 months of Adriamycin and CMF, including the nasty side effects during and long after. I have lived through nine months of Taxotere and the horrors that my body endured as my every cancer cell died, and the years of after effects. I’ve been bald twice, for an overall plucked chicken look that lasted several years of my life. My husband would tell me that I was perfect. That I never looked more beautiful (tram flap reconstructed breast and all). He said this with tears in his eyes and a quivering voice, from the deepest part of him.

I wasn’t a candidate for implants due to the large size of my tumor and the need to remove all the skin that surrounded my breast. I have been on Herceptin since 1998. Weekly from ’98 to ’01 and now, and still, every three weeks. I will remain with the program, keeping all metastases at bay, forever… Facing the very real possibility of your own death strengthens you in amazing ways.‘”THERE ARE TWO WAYS TO LIVE YOUR LIFE. ONE IS AS THOUGH NOTHING IS A MIRACLE. THE OTHER IS AS THOUGH EVERYTHING IS A MIRACLE.” (Albert Einstein) I remain *stable*, NED (no evidence of disease), blissful and serene, marveling at Life.

At this writing, in 2017, I am elated to share that after 10 years of Herceptin, I have been off of all treatment since 2008. I remain STABLE.

I keep constant vigilance without obsessing, a neat trick indeed. I monitor my thoughts daily. Survivors must remain on surveillance at all times, overseeing all body parts, partaking in regular CT scans, transvaginal pelvic sonograms, ECHO cardiograms, blood tests, bone density tests, colonoscopies, brain MRIs, breast surgeon exams, oncological exams and of course monthly self breast exams, yearly mammographies, annual PAP/HPV tests and *usual* checkups for *regular* people. This is all part of the life of a Survivor. I choose to view these necessities as luxuries provided by advanced technology. When the Ifs rise up in the middle of LIFE, detecting abnormalities early on can be life-saving. I am grateful for my many blessings and for the gift of each awesome day. EVERYTHING IS MIRACULOUS I have decided. I express my appreciation by going out of my way to counsel and comfort others, sharing my experience and what I’ve learned in becoming a professional patient. I do so with all my heart. I KNOW that what I give away will return to me tenfold, in accordance with Universal Laws.


If one person has survived your particular kind of cancer – YOU too can be a Survivor! Every thought is like a prayer. Every prayer is a potential miracle. You are a potential miracle. Once you align yourself with the True You, you become much like a holy spark, empowered beyond your wildest dreams! MAY YOU BE A BEAUTIFUL MIRACLE COME TRUE…


Andi
Andrea Barnett Budin
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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 02-19-2017, 02:06 PM   #2
lkc Gumby
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Re: ANDI'S STORY 1995 - 2017 and still going strong

You Rock Andi!
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Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 02-19-2017, 06:29 PM   #3
jaykay
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Re: ANDI'S STORY 1995 - 2017 and still going strong

Yep, you rock!
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 02-20-2017, 03:23 AM   #4
ariana
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Re: ANDI'S STORY 1995 - 2017 and still going strong

Love your post Andi.
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Old 02-20-2017, 05:31 AM   #5
gramen
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Re: ANDI'S STORY 1995 - 2017 and still going strong

Thank you for sharing your story. Just what I needed to read this morning. <3
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Old 02-20-2017, 02:09 PM   #6
Andrea Barnett Budin
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Re: ANDI'S STORY 1995 - 2017 and still going strong

It was my hope to lift up and inspire any and all of you, my beloved Sisters!

I think of you all often.

So grateful to be alive! Every single day is a beautiful blessing.

Cherish each day, one day at a time. Cherish all you love.

Give generously of your time cause it's a gift we each have the power to give. As we do, it returns to us tenfold.

Smile every day. Smile at strangers. Talk to them. Share. We are all here to share our experience. We each carry messages for one another.

I thank each of you for your words. That touch me deeply. Truly they do.

I want all I have been blessed to have for each of you. That comes from the bottom of my heart.

NEVER give up. Fight on, ladies.

If one person has survived, so can you.

Be a miracle !

ALL MY LOVE TO EACH OF YOU, NOW AND ALWAYS.

Always in my thoughts and in my heart...

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 02-21-2017, 02:14 PM   #7
caya
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Re: ANDI'S STORY 1995 - 2017 and still going strong

Thanks for sharing your story Andi!

Bis 120!

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 02-23-2017, 11:14 AM   #8
sarah
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Re: ANDI'S STORY 1995 - 2017 and still going strong

great story. inspiring. thanks
love sarah
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Old 02-24-2017, 06:02 AM   #9
TiffanyS
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Re: ANDI'S STORY 1995 - 2017 and still going strong

Thanks for sharing your story Andi! It’s very inspiring!


¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
03/17 – Second brain MRI scheduled
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Old 03-02-2017, 09:51 PM   #10
Whonoze
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Re: ANDI'S STORY 1995 - 2017 and still going strong

That's wonderful!! I have been on Herceptin for 10 years and am afraid to go off. I was Stage IV de novo and was NED at the end of my first round of chemo.

So very glad to hear how well you're doing.
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Old 04-04-2018, 06:01 PM   #11
Lucy
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Re: ANDI'S STORY 1995 - 2017 and still going strong

I was doing a search and came across this. What an amazing and inspiring story!

Wanted to bump it up so others might find it and be inspired. Thanks for sharing your story Andi!
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Old 04-05-2018, 12:59 PM   #12
Laurel
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Location: Hershey, PA. Live The Sweet Life!
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Re: ANDI'S STORY 1995 - 2017 and still going strong

Lucy (and Andi BB),

I am so glad that you bumped this! I had loved it the first time I read it and find it just as inspiring reading again! Beautiful! Thanks to you, Andi, for writing it, and to you, Lucy, for bringing it forth again!
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 04-06-2018, 08:14 AM   #13
Cathya
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Re: ANDI'S STORY 1995 - 2017 and still going strong

Andi;

Inspiring and thank you. Newly stage 4 I needed this.

Bless you,

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 04-06-2018, 08:27 AM   #14
Donna H
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Re: ANDI'S STORY 1995 - 2017 and still going strong

This was a great post to read - so inspiring and hopeful. Thanks!
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Old 05-08-2018, 07:55 AM   #15
Joan M
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Re: ANDI'S STORY 1995 - 2017 and still going strong

You always inspire me, Andi!
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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 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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