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Old 10-08-2007, 10:44 AM   #1
Andrea Barnett Budin
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Exclamation Gaining Control Of Your Life

My Keys To Success that brought me to PERSONAL EMPOWERMENT...!
<HR style="COLOR: #cc0033" SIZE=1><!-- / icon and title --><!-- message -->Ladies, As so many have asked for this list, I am repeating it in this new thread. This list was designed for me -- with my particular pathology. I am NOT a medical professional. (As I think Marie says, I only play one in real life!) I AM a professional patient if ever there was one (since '95) and have read extensively for a layperson's understanding of Supplements. The Internet is a fabulous tool for information, as you all know.

I "met" Dr. Mitchell Gaynor when I read the first page of his book, HEALING ESSENCE. It gave me goose bumps and changed my life (in '98 w/mets). It was in a stack sent by caring friends. I would take one off, reject it, and move on. Hard to concentrate when you're staring at your own mortality. Then one early morning of sleeplessness, at 5 AM with pitch blackness outside, I went in to my bathroom, closed the door, not to disturb my husband, turned the light on and put the toilet seat down. I sat and began to read. IT TURNS OUT THAT THIS BOOK WAS GIVEN TO ME BY MY BABY DAUGHTER (now thirty something). It led me to Dr. Gaynor's door. Consequently I have defied the poor prognosis handed me as a 4th stage metastatic invasive lobular carcinoma patient (2 out of 21 nodes+, recurred in multiple tumors throughout my liver, HER2+ 80% (in '98 that's how they categorized me). Vitamin H has saved my life, but so has Dr. Gaynor and all he taught me. Lobular and Her2+ are highly unusual and is an extremely aggressive form of bc. SO WHAT?

If you GOOGLE -- DR. MITCHELL GAYNOR -- www.drgaynor.com --
you will learn much about this remarkable healer, running an INTEGRATIVE ONCOLOGY CENTER in Manhattan. I love this man and was surely led to him through divine intelligence. It was SYNCHRONICITY at play...

You can contact Dr. Gaynor's office -- 212) 410 - 3820 for a copy of the book I speak of above, or for an appt. His credentials are within the SITE above. Do yourself a huge favor and take the time to check out his recent TV appearances (by clicking on the bottom of the site! IT IS MESMERIZING. YOU WILL BE TRULY INSPIRED AND ENLIGHTENED!! May the information touch your Soul and bless your life!

My spiritual journey has assisted me along w/all listed in my signature below. Feeling mortally endangered I was moved to draw on every resource I possessed. I sensed a great force within me. Going deep within myself, meditating and using guided imagery, I tapped into the mindbody link, knowing it was TRUE. My terrified emotions became quelled as I soared up into the Universe and became The Witness. As The Observor I connected with and merged with MY SOUL, my True Self! We are each sacred beings! The Soul is composed of fragments of divine energy from our Creator. Wehave yet to use 95% of our brains, scientists tell us. We have much to learn about our empowerment and ability to heal and manifest our most deeply desired destiny.

Healing powers were awakened in me, as I called upon the Universe to conspire with me to bring healing energy to my body. I had seen the look on the faces of the doctors and nurses. I had been hugged by a nurse at the outset. I felt her chest heave as she fought back tears, having read my chart. I WILL PRAY FOR YOU, she whispered into my ear. I KNEW I was in big trouble! Peeks at bc bks confirmed my suspicions. My prognosis was beyond poor. So, instead I turned to HEALING ESSENCE, Wayne Dyer's books, Seat of the Soul, The Power of Now, slowly making my way to joy and harmony and wellness despite it all.

I opened my heart to discover a whole new world. I live with a Knowing -- the Spiritual Realm touches us daily with the power of Guardian Angels, Teachers and Guides sent to be at our side. WE ARE NEVER ALONE. NEVER! I have come to identify myself as a Spiritual Being, with a mind and a body. I now see others as the Souls they truly are. This perspective changes everything! I turned my back on a sense of frantic helplessness and despair, fear and dread. Instead I have embraced my WHOLENESS, my True Self. I feel my Oneness w/all that IS. My personal crisis became a spring board to fresh Awareness, epiphanies and perceptual alterations. To awe and wonder. To feeling more alive than ever before. I am beyond grateful for each of my blessings, recognizing each that was there before but unrealized. I live with humble gratitude for my discoveries. I believe my wellness is more than miraculous. It includes the expertise of my surgeons and oncologists, my supplements boosting me up in every which way from the onset, and my awakening to a new reality that is sublime and EMPOWERING!!!

This is precisely what I wish for every one of you, my sweet Soul Sisters. I offer you my list below to be considered, based on your own pathology. I have included the supplements I take to fight off my 22 yrs of suffering from hot flashes. They are bold, and approved by Dr. Gaynor, but I hesitate to offer them as they are so controversial (including phytoestrogens, which some studies say can better bc outcomes and others fear). I am ER/PR-! So if you are plagued by constant flashing and desperation, think about these. My Plan B is to go on short term progesterone (pill or cream), hoping to stop the cycle.

Sending much loving, healing energy to all you wonderful women warriors with the courage of legions... ANDI

STAY STRONG, BRAVE AND DETERMINED. AND NEVER STOP BELIEVING IN YOUR OWN POWER TO CALL YOUR DESIRED DESTINY TO YOU! REFUSE TO ALLOW FEAR-DRIVEN CONCEPTS TO MANIPULATE YOU AND PLAY GAMES WITH YOUR LIFE AND WELL-BEING. AND FOR THOSE WHO NEED ADDL HELP (anti-depressant, anti-anxiety) I believe if anyone needs such assistance -- it's a ca patient! As my fav onc says -- YOU SHOULD NEVER HAVE TO SUFFER. WE HAVE REMEDIES FOR YOU TO HELP YOU GET THROUGH THIS... OOOOO XXXXX


MY VITAMINS/SUPPLEMENTS:
Asidophilus (AKA Lactobacilius Asidopholus) Probiotic, friendly bacteria/30 billion viable cells per capsule, maintaining healthy microflora) (major uncontrollable all day gas, pain and spasm relief) -- AM/PM
Alpha Lipoic Acid – 300 AM/PM (detoxifies liver, antioxidant, neutralizes free radicals, protects cells from damage, can cross the brain barrier, energy)

Biotin – 5 (AM) (healthy hair/nails)
B-6 (P5P50 activated B-6 -- AM (healthy heart)
B-12 – 1000 sublingual -- AM (boosts energy)
C-1000 w/Bioflavonoids 200/Green Tea 299/Proline 300 (AM) (enhances immune system, reduces recurrence of cancer)
Calcium – 600 w/D 400 -- 2 AM/1 PM (increases bone density)
Chromium – 400 mcg -- PM (boosts energy, maintains sugar levels)
Co-Enzyme Q-10 – 150 -- AM/PM (enhances immune system, prevents cancer cell proliferation,energizes, healthy heart, good gums)
D-3 – 1000 -- AM (STRENGTHENS bones)
DL-Phenylalanine – 500 (appetite suppressant, mood enhancer)

DIM-PLUS (Diindolylmethane) – 100 -- AM/PM (metabolizes estrogen) GOOD FOR "ME" -- as ER/PR-

E – 400 X 3 -- 2 - AM + 1 - PM (healthy heart, relieves hot flashes, immune booster, inhibits metastases, decreases tumor burden) HAS NOT INTERFERRED W/CHOLESTEROL #s AND IS OK W/CARDIOLOGIST TAKEN AT THIS LARGE DOSE

Echinacea – 300 w/golden seal – 100 -- AM/PM -- l wk on/1 wk off (staggered w/Thymulus) (immune booster)
Thymulus – 750 w/Astragalus – 250 -- AM/PM -- 1 wk on/1 wk off (staggered w/Echinacea/goldenseal) (immune booster)

Exhilarin – 615 Holy Basil Leaf Extract, Ashwagunda Root Extract (AM/PM) (relieves hot flashes, ENERGIZES)

Evening Primrose Oil 500 -- AM/PM (relieves hot flashes)

Fennel (Seed) – 480 X 1 AM/1-2PM (relieves gas, stomach pain, spasms, helps rid intestinal tract of mucous)

Flaxseed Oil – 1000 + -- AM/PM (heart healthy, anti-cancer, detoxifies, improves brain function, helps painful, severely dry eyes since Taxotere ’98) NOTE: I AM ER/PR-!

Ginkgo Biloba Extract – 60 -- AM/PM (mental alertness)

Grapeseed Extract 150 -- AM (anti-oxidant, can cross blood-brain barrier and protect brain and spinal nerves against free radical damage, enhances anti-tumor effect, protect liver, strengthen connective tissue, including heart system, supports immune system and slows aging)

Green Tea Extract Reservatol – 200 -- PM -- or drink 3 cups daily (anti-oxidant, heart healthy, anti-cancer)

L-Carnithane Fumerate – 500 --AM – empty stomach (amino acid, assists in gastro absorption, energy, heart, assists weight loss)
L-Glutamine – 500 --AM – empty stomach (amino acid, assists in gastro absorption, energizes)
L-Lysine – 500 --AM – empty stomach (amino acid, assists in gastro absorption, energizes, lowers triglyclerides)
Magnesium – 200 and Potassium – 545 -- PM (bone healthy, helps sleep, regulates bowels, energiezes, healthy heart, lowers blood sugar and triglycerides raises good cholesterol, prevents stroke)
NADH – 5 Co Enzyme 1 -- AM/PM --on empty stomach, 1/2 hr before eating (relieves chronic fatigue/ENERGIZES, improves mental acuity. DNA repair. good for muscle/joint pain)
OMEGA 3+ -- MEGA EFA (OMEGA-3 EPA (800) & DHA (400) -- AM/PM (suppreses tumors, inhibiting their growth, may slow or prevent recurrence of cancer, improves blood glucose, anti-inflammatory properties) NOTE: I add 1 pill when having belly pain...
PERFUSIA SR (L-Argenine) – 350 --AM (EJECTION FRACTION elevator, strengthens heart)
Phyto Formula – 1 scoop of soy lechitin powder. Spirulina barley grass powder, tomato powder, wheat grass powder + MULTIPLE powdered FRUIT/VEG anti-cancer lycopenes and antioxidants … in 8 oz potassium rich OJ (relieves hot flashes, promotes ENERGY BIG TIME, boosts immune system and mental clarity, helps regulate bowels)
+ 1 banana a day for potassium/strength/energy
<O</O
Garden of Life RM-10 Immune System Proten-zyme Mushroom Blend – 1165 (w/Aloe Vera 36 + Cat’s Paw Bark 305 + SELENIUM 200) -- AM/PM – empty stomach (regulates immune/stimulates immune system, anti-oxidant, detoxifier, heart protector, anti-inflammatory, reduces recurrence of bc)

Zinc – 30 (PM) (anti-cancer) NOTE: Any more upsets my stomach

+ I AM TAKING BLACK COHOSH ROOT 80 w/Motherwart 100 and Lemon Balm Leaf 50 -- AM/PM to relieve major constant hot flashing per Dr. Gaynor. I am ER/PR-! This has improved my QOL enormously, though has not totally eradicated the hotness. No long sleeve tops for me...

I get most supplements from: VitaCost, Nutriceutical Science Institute, Vitamin Shoppe, True Nature -- or VitaHealth Apothecary (free shipping) 212) 628 - 1110 in Manhattan through Gaynor...
<!-- / message --><!-- sig -->__________________


BE WELL. REMEMBER --
HEAL THY SELF = a
HEALTHY SELF...!

With LOVE, Andi






__________________
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 10-08-2007, 10:48 AM   #2
lilyecuadorian
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thanks very very much for share ...I' take a note for some ..of them thanks
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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 10-08-2007, 10:58 AM   #3
hutchibk
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Thanks Andi. What a wealth of knowledge. You are an incredible inspiration!!

(I think it is worth mentioning that for any folks currently on any type of chemo (not on Herceptin by itself as Andi is, but in combo with one or more chemos) - this list on the whole does not apply to you... as many supplements can interfere with the efficacy of chemo. So please be careful. I think this wealth of info applies mostly to early stage folks, those who are NED, and/or those who are on Herceptin by itself...)
__________________
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 10-08-2007, 11:41 AM   #4
Andrea Barnett Budin
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Exclamation When You Need Supplementing Most...

Thanks Lily and Brenda for your comments. Just to clarify -- when I had my recurrence in Aug '98, that is when I went to Dr. Gaynor. I had read his book in Aug '95 when initially dx.

I began Taxotere Sept '98, as I was told by my onc that I needed to start immediately and not wait to try and get in to clinical trials on Herceptin. As it was, they rejected me as I had had too much Adriamycin. And w/ongoing tests at the outset, my bc was fast progressing. Vit H was fast tracked by the FDA as of Sept 28, 1998 and became available to every one at that time. My docs waited till my first 8 wk set of CT scans to be certain the Taxotere was working. Then in Nov '98 I began H and have remained on it since. Stayed w/Taxotere through May '99 when I was declared in remission.

It is important to understand -- I BEGAN MY SUPPLEMENT REGIMEN IMMEDIATELY, in conjunction with my metastases. Dr. Gaynor believes that when your immune system is under siege from the chemo -- that is when you are most in need of supplements!

And I have stuck w/the program ever since. For a while I thought the demandng daily requirements were controlling me and my life. Then, I realized that taking the supplements put ME in control of my life. They further EMPOWERED me, beyond eating *right*, meditating, using guided imagery, scripting mantras for my daily mental chatter to incorporate and in fact come to dwell on (versus the fear-riddled thoughts, equating my weakened condition w/defeat, living w/thoughts full of uncertainty and helplessness). I troll for these thoughts with each day, confronting my negative and honest emotions at their arising. I investigate them and experience them, as repressing them is surely not healthy OR HEALING. Then, I move on, to programming my thoughts, reflecting what I truly want (vs what I fear most). I know to be careful what I think, as whatever it is I am concentrating all my energy on and focusing on will come to materialize in my life. This is a key truth I have learned and embrace. It is both the good news and the bad. It is up to us to choose our thoughts with clear intention and explicit expectation!!

What we think all day determines how we will feel (emotionally). It impacts our psyche and -- becomes a predictor of our fate! Once we own our BELIEF, we claim our power and can thus alter outcomes... Self-prophesying is the end result of what we dwell on all day.

The energy of our thoughts go out from us on varying frequency waves, depending on their makeup (positive or negative). The Universe (and others) sense this energy and respond to it -- IN KIND. So by envisioning myself as a Survivor I was calling upon the Universe to collude with me to bring me and make manifest what I consciously chose to infuse my mental dialogue with...

It is quite miraculous to discover how empowered we each are. We are so much more than we ever imagined. We are sacred beings indeed, meant to claim our birthright, granted us as we drew our first breath on earth...
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 10-08-2007, 12:11 PM   #5
hutchibk
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Hi Andi - not at all to discount what you and Dr. Gaynor have done in your case, but if I'm not mistaken, I have learned that a lot of research in the last 5 years or so has yielded some solid knowledge of interference of certain supplements with different chemos... I don't mean to mislead anyone or cast question on your tremendously successful experience! It is definitely up to the individual to pursue their own path. I guess it would be most prudent for someone to find a good and reputable cancer nutritional expert and follow their guidance. Dr. Gaynor is amazing from what I have read. I love mine, too, Dr. Dan Labriola in Seattle.

Love you Andi! Thanks for the valuable info.
__________________
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 10-08-2007, 12:23 PM   #6
Andrea Barnett Budin
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Wink Nut Oncs -- Where Are You...??

So true, Brenda, Finding an oncologist who is knowledgeable about supplements is a tough task, but so very essential. Conventional oncs/rock star oncs have asked me -- when I give them my alphabetized list of supplements -- YOU REALLY TAKE ALL THIS "S**T??? They are off put by the photo estrogens and fearful in general, as they are not at all familiar w/the efficacy. I can take their laughter and snarky remarks, as I have been blessed w/ my very own nut onc/healer...

Our medical schools do not train our docs in herbal remedies, much to the detriment of all of us. I am thankful to have found my gem/guru of an onc. My nut onc. Such great credentials and yet I would imagine most of his peers see him as off the wall, w/sound therapy, meditation and such. Yet he has saved many lives w/his INTERGRATIVE theories that surely soothe the Soul at the very least. Being dx w/bc is one of the most terrifying experiences a human being could be faced with. And it is ongoing, even if you are DANCING WITH NED... A daily, full time job!

Every thought is like a prayer. Every prayer is a potential miracle! The power of the energy of our thoughts and prayers is mighty! Not to be negated...
Andi
__________________
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 10-09-2007, 01:42 AM   #7
Annlyn
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Dear Andi
I think you left one off the list!!!!

...and an occasional glass of wine...

Annlyn
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Old 10-09-2007, 07:20 AM   #8
jhandley
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natural progesterone cream fro hot flashes

Hi Andi
I take a lot of similar supplements to you. I use natural progesterone cream for hot flashes it works a treat and helps you sleep. There is some evidence that it also normalises the p53 tumour suppressor gene.

Cheers
Jackie

6.5 yr survivor
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Old 10-09-2007, 08:25 AM   #9
Andrea Barnett Budin
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Wink A Thread Of Thinking That Needs To Be Followed...

The Mindbody Connection Is Real...
<HR style="COLOR: #cc0033" SIZE=1><!-- / icon and title --><!-- message -->Brenda D started a thread -- CAREGIVERS AT RISK? This is a copy of my post on that thread. Any others have similar stories around the time of dx?

I think it's important to share and note the connections...

The mindbody link is undeniable. Stress and anxiety compromise the immune system, lowering T cell count, disturbing sleep, lowering our Spirits... And that takes its toll on our bodies. Psychology is reflected in our physiology!

I too went through similar problems with my Mom and her *dying brain cells* causing her to have Alzheimer-like symptoms, become paralyzed, not know her name or mine, unable to care for herself ('89-'92). I arranged for round the clock nurses (like a little mini hospital administrator), plus visiting and stocking the house w/food and medical supplies of a large variety, arranging for ambulette to take her to doc appts as getting her in to the car was too much for me and a nurse. The wheelchair could go up and down the ambulette's ramp. Then, I found a nursing home for her (after scoping out all possibilities) and packed up her apartment, closed it down (as if she were dead) and moved her in to the geriatric center. Saddest day... Pathetic to see the shell of what used to be my Mother, unable to speak, communicate, feed herself... The works.

Mom was in that home from '92 - '01 when she died. I was dx in '95 and recurred in '98. Stressed out is an understatement. Broken-hearted. Grieving for her for so many yrs. That's when UNHEALED old traumas and old anguish come to the surface. We must learn to go deep within ourselves and do some self-investigation to bring resolution and transformation, to be the strongest, healthiest person we can become. Deep reflection can be transforming. NOW I know this. And I try to share my discovery with others, for their own good and wellness. We must all become aware of the impact of our stored up resentments and sorrows to best serve ourselves.

Thank you all for sharing this information. It is extremely helpful in learning to make the connection...
Ever pensive, 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 10-09-2007, 08:29 AM   #10
Andrea Barnett Budin
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Talking Oops. Almost Forgot...

Oh my Heavens, Annlyn... I MUST HAVE FORGOTTEN TO TAKE MY MENTAL ACUITY PILLS! Absolutely -- a glass of wine is essential to QOL.

My family laughs cause my favorite *glass* is a balloon glass (which is 24 oz large), on a long stem. I use it for my 10 8-oz glasses of water a day, carrying it from room to room.

And I use another for my wine. I only fill it half way up. Now, that's a glass of wine...Andi
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'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 10-09-2007, 11:55 AM   #11
StephN
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Exclamation Balloon glass

Hey Andi -
I was beginning to WONDER what you drank out of that 24 ounce glass!! A full bottle of wine is exactly 24 ounces (Magnum is double that amount). Beginning to look as if you drink your wine "by the bottle" instead of "by the glass!!" Glad I read to the end of your post ...

Was hoping an intervention for you and Tipsy would not be necessary, as healing oneself is one thing and over self-medicating another!
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"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 10-09-2007, 12:15 PM   #12
Mary Jo
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Thanks Andi for the all the information. It is mind boggling for me BUT my mind boggles easily. I do take some of the supplements you recommend, however, not all.

I will go the website of Dr. Gaynor and check this all out. It is interesting, to say the least, and learning new things is ALWAYS a good idea.

Thanks for all the work you put into this post.

Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 10-09-2007, 12:15 PM   #13
Andrea Barnett Budin
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Talking Thanks For Piping In, Jackie!

Jackie/Survivor! Way to go... Thank you so much for hearing my silent plea for help in this area. Interesting about progesterone cream. It keeps popping into my life. I hot flash all day, going from clammy and hot (at best!) to dripping wet and feeling like I'm on fire and trapped in my own skin. Did somebody turn the air off in here? No funny punchline to me.

How much do you use it (%/dosage)? Do you do it daily? Vaginally? How long have you used this? I know some bc women who've been on for yrs, w/no ill effects and all the benefits. And you raise an addl perk re p53 tumor repressor gene. Have to google that one, but it sounds great to me.

Thanks for the info, Jackie. I need some help in this area, to be sure. BE WELL! Feel blissful...
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 10-09-2007, 12:20 PM   #14
Andrea Barnett Budin
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Wink Attaining A Harmonious State

Hi Steph,

You know that blissful, serene look on my face? And meditation is good too... PLEASE NOTE: Not *medication*.

All the above are essential to good health. Moderation, I know. My family keeps me in line, don't worry.

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 10-09-2007, 01:08 PM   #15
StephN
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Wink Harmonious state

Hey Andi -
Next thing you know we will be referring to you as our Resident Buddha - teehee.



Do you have a mantra for Tiptoe?
__________________
"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 10-10-2007, 08:14 AM   #16
PinkGirl
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Wink Tip's mantra

Good one StephN..... how about aum....I am one with the rodent universe
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 10-10-2007, 04:11 PM   #17
Andrea Barnett Budin
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Exclamation The Great Compassion Mantra

Thought I'd bring my post from the TIPTOE THE HAMSTER thread over here, apropos of Steph's quest. For those who don't know, Pinkie shared w/us that Herceptin is derived from Chinese Hamster Ovaries. After much fun, wondering if their was any lead involved and understanding why some of us had sprouted whiskers, Pinkie adopted a little hamster from The Republic Of China. After staying at the Pink One's house in Canada, she has arrived at my door (in Boca), w/blue blingy stud earrings and a Journal. She is scheduled for a world tour, heading for Marie (BELIEVE 51) and Ed in R.I... Check out the whole thread for a good laugh. And keep on smiling...


In Search Of A Mantra...


<HR style="COLOR: #cc0033" SIZE=1><!-- / icon and title --><!-- message -->
Tiptoe is an enlightened being, full of peace and compassion, strength and fortitude. She tells me that the Great Compassion Mantra contains great healing power! It is like a magic spell or password to invocate or communicate with The One.

AUM MANI PADME HOM is cleansing and transforming. It allows the one chanting those syllables to attain the exalted embodiment of Compassion, Love and Wisdom. It puts you in touch with the awareness that your body and mind are empty without your Spirit! All the answers to all your questions lie within you.

In silence and meditation, you become free to connect with your Essence, or Soul. In so doing, you tap in to the powers of the Universe. Hail the jewel in the lotus. Be motivated to seek Compassion, Love and Enlightenment -- and peace and balance will fill you up to overflowing.

(I'm just telling you what Tiptoe explained to me...)

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...

Last edited by Andrea Barnett Budin; 10-10-2007 at 10:02 PM.. Reason: Joanne S. shared w/us that Herceptin is derived from Chinese Hamster Ovaries. Joanne is so in the know,keeps us UP
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Old 10-10-2007, 04:54 PM   #18
Mary Anne in TX
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Andi, I loved reading your list of supplements! My husband takes a couple of handfuls (well, maybe that's a bit of a stretch) each morning after his oatmeal doctored with ginger, garlic, red pepper, etc (yes it is dreadful smelling)! He had a major heart attach 12 years ago and began a serious study to take care of himself! He has had heart tests every year and always comes out smelling like a rose! (Actually, he amazes them each time. They couldn't get his heart rate up any higher while running this past week) He is faithful to exercise, eating no trans fats, meat, etc...you know the routine....and taking those yucky supplements! I say yucky because he chews them up! Ugh! But he does it. He gets criticism from people who think he "needs" some meat (including his mother) and his just overdoing it! He's 65, works every day outside in the heat and loves his life. He had spent 25 - 30 as a marriage and family therapist (still slips now and then and says yes to helping folks) and so doing stuff with his hands in the heat is wonderful to him.
Anyway, I say all that to say that for 10 years he has continued to get even more healthy and be so happy. He has been an inspiration to me to add supplements (one at a time....I'm such a hesitant pill taker) as I watch him be so healthy!
I know we need to be careful what we do, but for a "doubting Thomas" like me, I need to be a bit more open minded. I'm getting there!
I know that he comes from a family that is basically "long livers", except for his dad who had 3 major heart attacks and died a bit early.
My family has kinda, "one of each" disease to run from. But I have to think that what he has done would do me good, so I'm working on adding a bit every few months to see how it goes.
I totally admire the "healthy eaters, tea drinkers, supplement takers, and all who have such great self discipline. I'm really trying to be one! Well, part one anyway!
Thanks to all who question and make us think!
Mary Anne
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 10-11-2007, 08:49 AM   #19
Andrea Barnett Budin
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Cool One By One, Step By Step...

Hi Mary Anne, That's how I add supplements -- one at a time. What a few wks to see how I feel. Better, worse, AOK, stomach issues. Then I go off for a few days. Then I retry. Then I either eliminate or incorporate. I was previously not a pill taker. Swallowing one was a studied swallowing ordeal, like a drama queen. Still I take one at a time.

My husband pops a batch in his mouth and swallows it down. He can take a pill without water. He also doesn't understand why I need a knife (to cut up my food) as he just shovels in large mouthfuls. Paul had a heart attack in '85. Father died age 47, big bro at age 53, middle bro quadruple bypass +++. But Paul is under control and robust and (I can't believe I'm saying this) is turning 70 next week! He looks fabulous. I met him when he was 28 and I was 21. Wow!

I am still thinking about thinking about exercising. Actually my goal is a 10 min walk for starters. But can't drum up the energy to get dressed, unless I have to. So this is an issue... Still smiling and enjoying Life! 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 10-11-2007, 10:16 AM   #20
fullofbeans
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Hi Andi,

I enjoyed reading your post and since we have had same dx but that you are writing this 8 years later: I salut you!

As you know I also value very much mind and body connection and I am not saying that it is the crutial factor for everyone but I know that it is extremely important for me. Since to me the crash of my immune system due to stress was the cause of my cancer, I think that being full of hope and enjoying life and keep away from stress can only help my immune system, this is medically proven..eating healthy organic food will also improve one's immune system, fact.

Power of the mind is factored in most medical study too (placebo effect). Even for animal it is important. Many animals die when put in cages, even if they are fed, if they are released before death, some make fantastic recovery. Sometimes for human our cage can be our own easily worried atitude, an inherited mindset or feeling of inadequacies.

Continue smiling Andi, sure you'll find a great Mantra soon!
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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