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09-16-2016, 03:50 PM
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#1
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Senior Member
Join Date: May 2013
Posts: 570
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Re: My really big supplements list
Andi! Hello, have missed you around here. Thanks for updating the supplement list. Amazed by your success and striving to emulate it.
__________________
Tracy Arcari
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11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%) HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE
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09-16-2016, 04:27 PM
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#2
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: My really big supplements list
Hi Tracy. Hi Juls.
Have been aware the past 20 yrs that western medicine doesn't believe in supplements. Not proven science. My integrative onc (who I like to call my nutritional or nut onc) says they need to test the supps at higher dosages.
Sure he's right.
When I recurred in '98 and went to him, he gave me the list. Teaches meditation and guided imagery (also considered wackery by western med). I knew how to do this already. Knew about the mindbody connection. Had seen PBS specials in the 70s and 80s. Absolutely resonated with me. Made sense. As did the investigations into the existence of a Soul.
At the time of death, a small amnt of weight is lost every time they tested. Hypothesized it could me the Soul departing from it's home on Earth. Again, I felt it was like a REMEMBERING of things I never knew I knew.
So I had my supps list and told my reg onc that I planned on taking these supps. Made a list -- gave dosage and reasons. He suggested I wait until after chemo. That there could be counter indications, conflict with chemo agents. THEY DON'T KNOW !!! Bottom line.
I called my nut onc and explained. Of course he was familiar with this tired old response. NO, he said, IT'S DURING CHEMO, WHEN YOU'RE IMMUNE SYSTEM IS COMPROMISED THAT YOU MOST NEED THE SUPPS.
I boldly told my onc (who I still love and highly respect for his genius and excellent advice in general) that I intended to take the supps anyway. Right off.
As it is, within a mnth on Taxoere, I developed SHINGLES ! Itchy bug bite ??? mid abdomen. Saw another onc for a 2nd and a 3rd opinion. In doing that, I asked, the day after the bug bite occurred SOOO ITCHY / painful and in retrospect I felt so sick (and thought it was due to the chemo). In the waiting room I put my head in my husband's lap !! NEVER would do such a thing, but I felt I was going to pass out.
HERPES ZOSTRIX the onc said. What ????? That's shingles. Went immediately on Valtrex 2 or 3 x a day to fight it off.
When I went to my NY onc for tx he looked and said, YOU CAN'T GET CHEMO WITH SHINGLES. I was terrified. I KNEW I needed the chemo to survive too many tumors to count throughout my liver !!! I went home, looked up in my NUTRITIONAL HEALING manual SHINGLES. All ailments are listed alphabetically and they list and explain the necessary supps to take.
So I ADDED a few. Sent my husb to health food store to purchase them and began taking them immediately. I was so very sick with pain and the spread of the rash all around the torso front and back!!
You can have Shingles for months, even a whole year. I would die if I couldn't have the chemo.
I returned to the NY onc 10 days later for a checkup. How are you doing? I smiled and said, GOOD. He doubted and smiled and said, Let me see. I lifted my shirt sitting on the exam table and he walked all around. He said, delighted -- YOU'RE RIGHT !!! All the pustules had crusted over and were healing. YOU CAN GET CHEMO, the onc said. YOU CAN GET IT TODAY !!!
CURED IN 10 DAYS. My immune system was boosted. Took the meds required right off, luckily !!! And added more supps specifically to tx Shingles.
So -- I believe in my supps. They are miraculous. Hospitals think we're nuts (those who take all the supps and flush $$$ down the toilet). My 3rd opinion onc in NY (from Mt. Sinai, very highly regarded) didn't want to mess with my belief system but admitted to me that he had given 100 of pages of lectures against supps.
This is what we're up against. Mainstream medicine is clueless. They don't teach medical students about nutrition or supps. Maybe a few hrs on a single day. I asked my SIL who is an OB GYN. Conservative medicine is what our docs practice. Not open to alternative, integrative medicine !!!
I am!!! I attribute my success to the chemo and the surgeries, but also to the meditation, the mantras, the guided imagery, my Zen attitude (some say I am like a Buddhist).
I envision myself far, far into the future. Daily. In vivid detail. Through meditation. Daily. All these yrs.
I wish all my Sisters miraculous success ! And BELIEF. And courage, cause you'll be meeting much opposition to such "lunacy". Forewarned is forearmed. Right ??
Love and Light dear Ladies.
Andi
Always here for you. Any time. Just PM me or e me. I love to help. It is part of why I have been spared my life. I have messages for you.
And you each have messages for me ! That's why we're here, people. To love and help one another. And carry messages for one another.
__________________
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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