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Old 01-07-2018, 10:53 AM   #1
CutiePie
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Preventing re-occurance & new BC question

I don't post much anymore since I'm 12 years from diagnosis. At age 46 was dx with Stage 1, ER- PR- Her2 +++ node negative BC - 2 tumors. Had lumpectomy with chemo (AC & maybe Taxol, can't remember), radiation then Herceptin had to stop at 10 months (onc wanted 1 year of Herceptin) due to low Mugga scores.
I had the typical chemo reactions, hair loss, chemo brain, neuropathy. Thought I was doing ok then needed a hip replacement due to arthritis symptoms came on quickly. Also need 2 separate wrist surgeries for arthritis and the other hip need to be replaced all within 3 years. Having lots of joint issues, am hypothyroid and take Synthroid.
Had genetic testing and tested positive BRACA II, had ovaries removed, double skin saving mastectomy with reconstruction. (wish I had the testing before lumpectomy) Very worried about more cancer. Don't see Onc anymore.
My question is, is anyone aware of GCMAF (Gc protein-derived macrophage activating factor) a Vitamin D binding protein naturally found in the human body? literature states it will cure four stage cancer by Kick-Starting the body's own immune system with NO side effects. Onc that presented his findings was found dead of apparent suicide.
Any info you may have would be great. I have been taking D3 as I am calcium deficient and take apple cider vinegar capsules to reduce inflammation, but info about GCMAF states we should NOT be taking anti inflammatory supplements. So confusing to know how to be healthy again.
So sorry for the long rant, I don't know how to put my dx info on the bottom of my post as I've seen others have.
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Old 01-09-2018, 07:50 AM   #2
jra40
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Re: Preventing re-occurance & new BC question

Interesting, looking forward to any replies with insight on this! I too am looking for ways to prevent a recurrence, I take a wellness regime called Thrive which has helped me immensely with weight loss and joint pain. Something I read recently about a stage 4 blood cancer patient who started taking Curcumin (Turmeric) and has gone into remission. Trying to find the article, will post when I find it.
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11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 01-10-2018, 10:17 AM   #3
CutiePie
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Re: Preventing re-occurance & new BC question

Yes hoping this post gets replies. I'll have to look into Thrive as I have joint pain and can't lose any weight. It interesting about Curcumin (Turmeric) putting stage 4 cancer patient into remission, I have been taking Turmeric capsules for about a year now. I started using it to help with inflammation since a study stated that in India there is low incidents of inflammatory disease. My PCP also informed me he takes it to help ward off symptoms of Alzheimer's and dementia.
Lets hope we can combat this disease with supplements without adding additional issues.
Thanks
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Old 01-10-2018, 11:17 AM   #4
donocco
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Re: Preventing re-occurance & new BC question

Another one is Coenzyme Q10 at least in breast cancer. There was a report way back when in Denmark where 3 or 4 patients with metastatic breast cancer were put into full remission taking 390mg Coenzyme Q10 daily. All of them had previous chemo. Anyone interested can look this up.

There is or was an alternative clinic in New Mexico where there cures of pancreatic cancer using Low Dose Naltrexone in combination with intravenous Lipoic Acid. One article in the American Journal of Epidemiology did a retrospective study where women taking Motrin (Ibuprofen) at least 4 times a week for years had one half the rate of breast cancer incidence. You have to be careful here because Motrin interferes with the heart protective action of Aspirin. The point is a lot of good info is kind of supressed.
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Old 01-10-2018, 05:24 PM   #5
MaineRottweilers
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Re: Preventing re-occurance & new BC question

Hey, Jessica, do you have a link to the Thrive products you spoke of?
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Tracy Arcari
___________________________________________
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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Old 01-12-2018, 11:16 AM   #6
CutiePie
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Re: Preventing re-occurance & new BC question

Hi when I was having low Mugga scores due to Herceptin my onc recommended taking COQ10 still taking it today. Will check what my dose is.
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Old 01-12-2018, 11:19 AM   #7
CutiePie
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Re: Preventing re-occurance & new BC question

Would love to also have more info or a link to Thrive products. Not sure what I'm looking at with a google search.
Thanks all you have been helpful in calming my nerves. Don't always want to think about this disease but want to live my "new" life.
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Old 01-12-2018, 12:36 PM   #8
c1k49
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Re: Preventing re-occurance & new BC question

From Breatcancer.org "Only one randomized clinical trial has been done with cancer patients so far. This trial suggested that coenzyme Q10 decreases the effects of doxorubicin, a chemotherapy drug, on the heart. In non-randomized studies with women who had breast cancer, some benefit was suggested, but problems with the research made it impossible to determine whether the benefit was related to coenzyme Q10"

I think it's definitely worth looking into. As well as turmeric!
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Old 01-15-2018, 05:34 PM   #9
Mary Jo
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Re: Preventing re-occurance & new BC question

Reading above on some of your comments on Turmeric. I, too, am a 12 year Her 2 +++ survivor. I started taking turmeric at around 3 years out and my oncologist told me to keep taking that because the science behind it was very promising.
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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 01-16-2018, 02:58 PM   #10
nancy dip
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Re: Preventing re-occurance & new BC question

Mary Jo, I remember you well and it's lovely to see you again on the board. Health and happiness to you and your family. Nancy
__________________
Found lump myself 8 months after routine mammogram.
29/11/06-WLE and then re-excision to get clear margins.
Tumour was 1.2cms; Grade3; Er+ Pr+ HER2 3+++; SNB negative out of 9 nodes.
Chemo was Epirubicin every 3wks x4 then Xeloda (2wks on, 1wk off) for 4 cycles. ( I am part of the TACT2 trial.)
Rads x25
Arimidex for 5 yrs.
Hoping to start Herceptin within the next 2 weeks (we have to follow the HERA protocol to qualify for Herceptin in the U.K.) I worry about the delay in starting Herceptin!! Started 8/10/07
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Old 02-14-2018, 08:15 PM   #11
Jean
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Re: Preventing re-occurance & new BC question

Hi MaryJo,
Also good to see you - I do not come on the site that often.
You look wonderful !


I have been taking CQ10 and Tumeric along with D3 plus a few other items.
Andi as you all know has a very strong regime that she follows.

Best Wishes to all,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006

Last edited by Jean; 02-14-2018 at 08:22 PM..
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Old 02-15-2018, 08:38 AM   #12
jra40
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Re: Preventing re-occurance & new BC question

Sorry for not posting the link for Thrive, here it is. If you Google search, the company is Le-Vel. https://lvaddy.le-vel.com/
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 02-17-2018, 09:44 PM   #13
SoCalGal
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Re: Preventing re-occurance & new BC question

Cura Pro is a good brand. It needs to be taken on an empty stomach, in divided doses, but check with your MD first. (My doc took me off cura pro when I started KADCYLA).

CURA PRO: CuraPro delivers up to 500 times more curcumin to the bloodstream than turmeric , and has a sustained retention time at significant levels in the bloodstream.† This high-potency formula, featuring clinically studied BCM-95® Curcumin, yields a minimum of 500 mg of curcuminoids per softgel.
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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 02-19-2018, 02:05 PM   #14
Catherine
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Re: Preventing re-occurance & new BC question

Cutie pie, to list your dx and treatment, I think you go to profile and then go to signature. This is an interesting thread about Tumeric, cq10 etc. I just tried to edit my signature. Maybe someone else will chime in. On the home page go to FAQ. It will bring up a list about adding to your profile. Wish I could be more specific.
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Catherine


Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021

Last edited by Catherine; 02-19-2018 at 02:09 PM.. Reason: Adding a sentence
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