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Old 06-10-2007, 10:04 AM   #1
R.B.
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Donna

The link says this "She also should not receive estradiol, of course. ". Do you maybe mean estroil ? One for your onc to answer maybe?


Hopeful

This is what the link says about arimidex. There are lots of different opinions. I have no idea what is right wrong best or otherwise, but you could always print the link out and take it along to see what your onc says.

" Certainly a person with an estrogen-receptor-positive tumor is at much higher risk with estradiol treatment than an estrogen-receptor-negative tumor. However, both types of tumors have an elevated risk of recurrence with estradiol treatment.

My thoughts are that a patient with a history of estrogen-receptor-positive tumor should DEFINITELY be on Arimidex for life! She also should not receive estradiol, of course. The other hormones (except DHEA) are fine. The downside for women at risk of breast cancer is that DHEA can convert to estrogen and has a stimulatory effect on breast cells, particularly when estrogen is low. Close watch on overall hormone balance levels is required, and testing is recommended every 6 months. In terms of estrogen receptor negative, I would say that Arimidex is probably not a must. "
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Old 06-11-2007, 10:09 AM   #2
Donna
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You're right, R.B.

Dear R.B.,

Yep, I misspoke, it was estriol that I was taking.

My oncologist gave me a prescription for estrogen vaginal suppositories and I haven't discussed it with her yet, will at the next appointment, but the information I found was that since I am on Arimidex now I should not be taking any sort of estrogen - period. It's too bad because it was really helping me.

Best to you,

Donna
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Old 06-11-2007, 11:04 AM   #3
R.B.
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Donna,

If you have not you might like to check the link as that is the point it is differentiating between oestrogens and saying some are OK with arimidex. I cannot say if they are right or wrong, but knowledge is power and at least you will know you have checked all the options.

Good luck

RB
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Old 06-11-2007, 11:41 AM   #4
SoCalGal
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curious george

Hi RB,
I was wondering why you do not have a profile, etc. You sure seem to have a lot of valuable information and I wondered what your dx was. Flori
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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 06-11-2007, 01:36 PM   #5
Adriana Mangus
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Similar dx

Hi Fiori: Your dx is quite similar than mine, except skin mets. I have mets to rt lung and breast bone. Doing ok for now. Xeloda did not work for me, so am back on navelbine. According to onc I have not yet become resistant to herceptin, -based on the tumor markers readings- that's why we both decided to go back to navelbine. I will see him next in August. Anxiously waiting....

Sending you a positive vibes and a big hug.
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 06-12-2007, 05:13 AM   #6
R.B.
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Flori (curious George ?)

I have posted this before but no dx. Male, non sufferer, somebody near died of BC.

I have been researching for a book I am writing/ almost written on fats omega threes and sixes, and often come across bits of interest.

It makes me feel better to feel I am contributing. Visiting the board provides a distraction from endless reading. A need to communicate. I suppose one day we could be talking to computers to satisfy our need to connect. Would I know in a few years if your were a computer?.

I have my complex motives divers circumstance questions and experience that brings me to where I am as we all do. It include the odd rail at the jobsworth syndrome that institutions engender, a sense of frustration etc etc. and so it has always been and so it will always be - except unless we get a bit better at avoiding out organisational weaknesses and get more of the Star Trek ethos we may not survive as a species, and certainly are at risk of going backwards.

I am passionate about diet and the more I read the more dumbfounded I am at the body's complexity and sophistication, and the more glaring evident it is that diet has to be a risk reduction starting point.

I am constantly learning and adapting myself and have my cookie moments but they do get to taste less good they more I work at my diet.

AND A bit of a meander. I am smarting from one of those encounters with bureaucratic pass the parcel preferably from their perspective into a dark cabinet in the basement where it will never need to be retrieved. The consequence is that it will involve ten times as much work as would dealing with it now, which matters to me if not somebody who is paid no matter what.......... And it is already four years which leaves me momentarily somewhere between rage and tears at the stupidity and injustice of it all - all of which is as to nothing to what you go all through.........


RB
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Old 06-12-2007, 07:12 AM   #7
R.B.
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An informative link on estriol etc.

As ever please discuss such issues with your medical advisors.

http://healthyimmunity.com/Hormone-H...harmacies.html

RB
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