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Old 10-04-2008, 10:40 AM   #1
bcindc
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Vitamins, supplements & chemo

Ladies, I have been taking some high tech vitamins & supplements which have given me amazing energy boost since I've been on chemo. I've noticed conflicting research on anti-oxidants and whether they might interfere wtih chemo. Esp worrying was the recent stury re: vitamin C. I wondered what vitamins, supplements you take, whether you think some of them might interfere with chemo, what's really helped you survive the crazy treatments they give us.

Here's what I've been taking--
CoQ10
Milk thistle
Vitamin D3
Vitamin E
Turmeric
Broccoli seed extract
L-glutamine, aloe & licorice formula
Immunoglobulin concentrate
Probiotics
Pancreas concentrate, pancreatin
Multivitamin with tons of stuff in it, but have stopped b/c it has 400% vitamin C
__________________
Diagnosed 12/03 HER2+ ER+ PR-
AC & T 1/04-6/04
Mastectomy 7/04 7in tumor, 5 of 9 nodes positive
Radiation 8/04
Herceptin 2004-05
Arimidex Zoladex 2004-07
Recurrence 12/07 liver mets, bone mets, pleural effusions
Navelbine, Zometa, Herceptin 12/07-8/08
Carboplatin, Abraxane, Zometa, Herceptin 9-12/08
Ixempra, Zometa, Herceptin 1-3/09
Avastin, Tamoxifen, Zometa, Herceptin 4/09-present
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Old 10-06-2008, 11:41 AM   #2
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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Smile You Asked... Here's What I Previously Posted A While Back

My Keys To Success

Ladies, 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. 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 with some kind of divine intelligence. You can contact his office -- 212) 410 - 3820 for a copy of the book or 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! THEY ARE TRULY INSPIRING AND ENLIGHTENING!! May they touch your Soul and bless your life!

My spiritual journey has assisted me along w/all listed in my signature. 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 emotions became quelled as I soared up into the Universe and became The Witness. As The Observor I connected with and became MY SOUL, my True Self!


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. 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.


Mainstream docs don't know much about vitamins/supplements, are not taught more than a single day's worth of info on this topic in medical school -- SHAME ON WESTERN MEDICINE! They are therefore suspicious, suspect you are wasting your time and money, worry that some may interfere with the chemo regime you are on.

So it took a lot of courage for me to decide, beginning with my recurrence in '98, to follow my beloved *nut oncs* (nutritional oncologist)advice. IT IS WHEN YOU ARE TAKING CHEMO, AND YOUR IMMUNE SYSTEM IS COMPROMISED, THAT YOU MOST NEED TO BE TAKING SUPPLEMENTS.

I continue to take the vitamins/supplements listed below every single day. After carefully researching each one, one at a time, gathering other experts opinions (especially re dosages) and trying 1 at a time. Waiting to see if I had any adverse reactions I could pinpoint as coming from the correct source. Stopping that source for a few days. Trying it again. If the side effects recurred, I took the loss and either through the pills out or offered them to those who could better tolerate them.

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

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) (promotes healthy bowel function,
provides 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 1000 (AM) (enhances immune system, reduces recurrence of cancer)

Calcium – 1200 softgel w/D 800 -- AM (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) (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)

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)


Evening Primrose Oil -- 1000 (relieves hot flashes, downregulates HER2 by binding to extra cellular HER2 receptor, down regulates internal proliferation)


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


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/PM– empty stomach (amino acid, assists in gastro
absorption, energy, heart, assists weight loss, immune booster)

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)


<BLOCKQUOTE style="PADDING-LEFT: 5px; MARGIN-LEFT: 5px; BORDER-LEFT: blue 2px solid"><DIV><FONT lang=0 face="Lucida Calligraphy" size=6 PTSIZE="24" FAMILY="SCRIPT"><FONT style="BACKGROUND-COLOR: transparent" face=Arial size=2><FONT face="Comic Sans MS" size=3>Phyto Formula – 1 scoop of soy lechitin powder. Spirulina barley grass powder, tomato
<STRONG><FONT color=magenta>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
__________________
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 10-07-2008, 03:09 AM   #3
jhandley
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Smile chemo window

Ask your onc. how long your chemo takes to work before it is broken down in the liver. I stopped taking supplements 3 days before chemo and started 3 days after. Q10 has a half life of 30 hours so I wanted to have it drop by 1/2 x 1/2 so that it didn't interfere with the taxol. taxol I believe exerts its cancer killing effects within 24 hours after administration.

I also took reishi extract in week 2 and to up my white blood cell count..worked very well.

cheers
Jackie
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Old 10-07-2008, 06:25 AM   #4
Rich66
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Messages from
D Scott Cunningham MD, PhD

Site Editor, MDLinx Oncology
Vitamin C Antagonizes Cancer Chemotherapeutics 10/2/2008
  • Using a murine model, researchers at Memorial Sloan-Kettering Cancer Center have shown that vitamin C decreases the efficacy of cancer chemotherapeutic agents. While the researchers anticipated that only those agents which utilized oxygen free radicals as a means to invoke apoptosis would be affected, it was shown that all chemotherapeutic agents tested were so affected. Specifically, tumor cells pre-treated with vitamin C exhibited 30-70% less killing than untreated tumor cells.
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Mom's treatment history (link)
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Old 10-07-2008, 06:34 AM   #5
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See new article on walnuts
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Mom's treatment history (link)
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Old 10-07-2008, 10:55 AM   #6
hutchibk
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Many oncs don't know too much about vitamins, supplements and the protected zones around your infusion days...

My nutritionist is Dr. Dan Labriola in Seattle. Here's an article about him and his contact info. He is one of VERY few foremost experts in this area. I do phone consults with him or his partners (Dr Bufi and Dr Pratt) at least once a year.

http://seattlepi.nwsource.com/local/...uropath24.html
http://www.cancure.org/dr_labriola.htm
http://www.nwnaturalhealth.com/providers.html
http://www.nwnaturalhealth.com/faqs.html
http://browse.barnesandnoble.com/booksearch/results.asp?ath=Dan+Lab...
__________________
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 10-07-2008, 12:56 PM   #7
StephN
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Thumbs up

Good work, Brenda, in posting these links.

VERY interesting info from the first link:

"In 1999, Labriola and Dr. Robert Livingston, a cancer specialist at the University of Washington, reported in the journal Oncology that patients undergoing certain kinds of chemotherapy who took anti-oxidant supplements suffered much poorer outcomes than patients who didn't take anti-oxidants. Other popular anti-oxidants include vitamins A, B-6, selenium and many herbs.
"I don't recall if there were any deaths in this group, but long-term survival was certainly worse," Labriola said."

Dr. Livingston was MY med onc until he left for Arizona a couple of years ago. When I went on chemo in 2000 he asked me to bring in all supplements I was taking and told me which I could still use and what to discontinue. I felt he knew what he was talking about, but did not know at the time of his linking up with Labriola.

I am just one of his patients who misses him greatly.

Maybe it is time to look up Dr. Labriola and his colleagues. His office is practically next door to my regular physician.
__________________
"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 10-07-2008, 04:32 PM   #8
hutchibk
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Lucky you Steph! I wish I could go in person! But they take really good care of me by phone. I am not as compliant as I should be, as I have been a very lazy vitamin taker the last 6 months... but I have a consult with Dr Pratt (one of Dr Labriola's partner docs, as he is too booked up right now) tomorrow and will see what new and exciting things she has in store for me...
__________________
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 10-15-2008, 11:10 AM   #9
RobinP
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I have a feeling that supplements during treatment may interferr with tx. drugs. This was evident clincially with vit. c, as demonstrated in studies. If you want to use supplements wait until after tx.
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Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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Old 10-15-2008, 12:00 PM   #10
hutchibk
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Or consult with an expert like Dr Labriola... he told me to steer clear of vit c and most anti-oxidants while in treatment, over 4 years ago. He has a very specific plan of which vits you can and can't take while on different treatments. For the last 18 months, I was not allowed to be on Multis or B complex, or anything with folic acid, while on Xeloda... I am just now allowed to add my multis back in. He is very conservative with supplements and is constantly working with other docs around the world (has been for 20 years) to refine and study what is safe and not safe in the world of complimentary medicine...
__________________
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."

Last edited by hutchibk; 10-15-2008 at 12:02 PM..
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Old 10-15-2008, 12:21 PM   #11
Rich66
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Is a typical multivitamin hazardous?
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Old 10-15-2008, 08:06 PM   #12
caya
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When I was on chemo, my onc. told me absolutely no vitamins, supplements etc. of any kind - he did not want me even taking my cranberry extract supplement for UTIs - I think most oncs are firm on this - you want that poison to work as well as possible - I stopped taking everything until I was on Herceptin only, and even then I went over it all with my onc.

all the best
caya
__________________
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 10-16-2008, 06:55 PM   #13
Gerri
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Here is a link to an article regarding vitamins and supplements in the current Cure Magazine.

http://www.curetoday.com/currentissu...ood/index.html

It is a great publication and is free to all cancer patients.
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
- Robert Brault
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Old 10-24-2008, 09:51 AM   #14
SoCalGal
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I have not read thru all the responses - just wanted to mention that my doc who has me on a million supplements said that MOST doctors do not understand the pharmacology of the different chemotherapies and assume they all work with free radicals. He said regarding supplements it depends case by case what kind of chemo you are on and how that works. That will dictate the supplements that will compliment treatment.

I do not understand the complex issues but I do read all the postings and discuss them with him. He is an MD with a PhD in pharmacology and a specialty in integrative oncology. Phew - that's a mouthful

I think it's important not only to discuss supplements with your docs but to get a good explanation of why or why not something is okay to take.

Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 10-24-2008, 11:04 AM   #15
Rich66
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Is Potassium an antioxidant? Would it conflict with Xeloda?
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Old 10-24-2008, 11:06 AM   #16
Andrea Barnett Budin
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Exclamation Wish Things Were More Clear-cut

My oncological nutritionist specializes in integrative oncology, including meditation and guided imagery. I credit his wisdom, my incorporation of all his recommendations, and of course Herceptin with my miraculous results. Each and all contribute.

I simply worry about throwing out the baby with the bath water. Yes, first do no harm, but I am greatly disappointed in mainstream and top docs who are AFRAID of interactions. What may be enormously beneficial to a patient receiving chemo, whose immune system is under siege and needs assistance in strengthening their resistance is being lost, mostly out of fear and misunderstanding.

Just as anti nausea meds helped me not to puke my guts up, as pain killers eased the throbbing in body parts I never knew I had, supplements have served me well.

Finding a doc like Flori's, or mine, is difficult I know, but please try to keep on proactively searching for your guru.

Sent with love...
__________________
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 10-24-2008, 06:35 PM   #17
Rich66
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Web address:
http://www.sciencedaily.com/releases/2008/10/
081022164724.htm
Cancer Treatment: How Eating Fruit And Vegetables Can Improve Cancer Patients' Response To Chemotherapy

ScienceDaily (Oct. 24, 2008) — The leading cause of death in all cancer patients continues to be the resistance of tumor cells to chemotherapy, a form of treatment in which chemicals are used to kill cells.
Now a study by UC Riverside biochemists that focuses on cancer cells reports that ingesting apigenin – a naturally occurring dietary agent found in vegetables and fruit – improves cancer cells' response to chemotherapy.
Xuan Liu, a professor of biochemistry, and Xin Cai, a postdoctoral researcher working in her lab, found that apigenin localizes tumor suppressor p53, a protein, in the cell nucleus – a necessary step for killing the cell that results in some tumor cells responding to chemotherapy.
The study, published in the online early edition of the Proceedings of the National Academy of Sciences, provides a novel approach to conquer tumor resistance to chemotherapy, and suggests an avenue for developing safe chemotherapy via naturally occurring agents.
Normally, cells have low levels of p53 diffused in their cytoplasm and nucleus. When DNA in the nucleus is damaged, p53 moves to the nucleus where it activates genes that stop cell growth and cause cell death. In this way, p53 ensures that cells with damaged DNA are killed.
In many cancers, p53 is rendered inactive by a process called cytoplasmic sequestration. Apigenin is able to activate p53 and transport it into the nucleus, resulting in a stop to cell growth and cell death.
"In therapy you want to kill cancer cells," explained Cai, the first author of the research paper. "But to stop cell growth and to kill the cell, p53 first needs to be moved to the cell's nucleus to function. Apigenin is very effective in localizing p53 this way."
Apigenin is mainly found in fruit (including apples, cherries, grapes), vegetables (including parsley, artichoke, basil, celery), nuts and plant-derived beverages (including tea and wine). It has been shown by researchers to have growth inhibitory properties in several cancer lines, including breast, colon, skin, thyroid and leukemia cells. It has also been shown to inhibit pancreatic cancer cell proliferation.
"Our study advocates the inclusion of vegetables and fruit in our daily diet to help prevent cancer," said Liu, the research paper's coauthor.
The National Institutes of Health supported the five-year study.
Next in their research Liu and Cai plan to design therapies for cancer by finding compounds that are like, but perform better than, apigenin.
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Old 10-24-2008, 10:40 PM   #18
SoCalGal
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Location: LA LA Land
Posts: 1,607
Rich - potassium is a mineral found in bananas. It is not an anti-oxidant.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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