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Old 06-09-2007, 04:13 PM   #1
R.B.
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!!** Vaginal atrophy, urethral problems, Hormone administration Estriol, Progesterone

Controversial, but deals with some fundamental issues !!

Hormone Therapy Possibilities for Breast Cancer Survivors and Women at High Risk for Cancer

by Pete Hueseman R.Ph.,P.D., Consultant Pharmacist
May 2004

http://www.project-aware.org/Resourc...stcancer.shtml


I suspect Alaska Angel may have a few thoughts on this.

This looks like a very serious article. It runs very much contrary to the "general" views we see expressed as to oestrogens and BC.

Please excuse me for posting this here but I think it is both of sufficiently wide interest and plain language to warrant it.

I came across it whilst looking at something else. I was wondering if they had looked at testosterone and BC. From this people obviously have, and it is suggested it increases survival but I have not as yet had a chance to look further.

This may give those with related issues something to print out and discuss with your oncs.

As usual I post it as a non expert simply on the grounds it looks like a serious article and I think it of sufficient importance to bring to your attention. This is clearly highly controversial and you must seek advice.


Estradiol is the most potent oestrogen, is made by aromatase P450, which needs PGE2 which is made from a child of omega six. P450 is what aromatase inhibitors target to try and stop it producing Estradoil.

Aromatse is found in the highest levels in the ovaries, the placenta and adipose tissue (fat).


RB
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Old 06-09-2007, 04:33 PM   #2
R.B.
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As usual things are rarely clear - and I presume this is for HRT and testosterone - one higher risk one lower - and is not the same as testosterone on its own - as many questions as answers.

RB


http://www.ncbi.nlm.nih.gov/sites/en..._uids=15356405

"CONCLUSIONS: These observations suggest that the addition of testosterone to conventional hormone therapy for postmenopausal women does not increase and may indeed reduce the hormone therapy-associated breast cancer risk-thereby returning the incidence to the normal rates observed in the general, untreated population."


And this is what was reported in the press for the Nurses Study

http://www.medicinenet.com/script/ma...ticlekey=63110

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Old 06-09-2007, 10:50 PM   #3
vickie h
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I have been on The Wiley Protocol for almost 2 years now, and I am feeling great. I have bio-identical hormones made for me at a specialty or compounding pharmacy. It is the same protocol that Suzanne Sommers used to cure her breast cancer. I swear by it, it has made a dramatic change in my life. You can google it or go to wiley protocol.com. Much love, Vickie
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Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
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2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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Old 06-10-2007, 08:40 AM   #4
Donna
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Not so fast

Hi Amazing Group,

I was using bio-identical hormones made by a formulary when I was dianosed - I had been using them for several years thinking it would protect me from all the "nasties" the chemical substitutes caused. I took estadiol, progesterone and testosterone. I think it would be unwise to call these bio-identicals protective. Also, the way I understand it, estrogens can be made from testosterone (?) and should also not be taken. I could be wrong there, let me know.

Have a great day!

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Old 06-10-2007, 09:39 AM   #5
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I suffered from VA prior to bc. Now, with hormone positive bc (ER 80%, PR 50%) I take Arimidex, and the situation has become dire (i.e., the tissue has lost flexibility and it was almost impossible to do a Pap smear at my annual.) My gyn said two things improve tissue health: hormones and increased blood flow to the tissues. My onc said I could try hormone therapies IF I swtiched from an AI to Tamoxifen. My Oncotype Score of 44, validated against patients with a similar gene make-up treated only with Tamoxifen, leads me to believe that that would be a dangerous approach for me to take. I then asked my onc about Viagra to increase blood to the tissues. He treats a variety of cancers, including prostate, so I know he is familiar with the drug. He has no problem with it, but proceeded to scare me with a litnay of possible side effects. I have a sample packet of the pills, but fear the vision loss that is a remote but still distinct possibility. If anyone else here has tried it or discussed it with their doc, or known people who have used it without the vision side effects, I would love to hear about it; otherwise, I guess just some encouragement to give it a go would be appreciated. I see my gyn again next month, and I do not anticipate good news.

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Old 06-10-2007, 10:04 AM   #6
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 06-12-2007, 07:19 AM   #7
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I read mixed reviews on the postmenopausal use of HRT after BC. It appears that the lower the dose, the more bio-identical the formulas are, and the lower the duration of therapy, the less risk of increased bc mortality. Additionally, the progesterone with estrogen increases risk. Also, cyclic progesterone rather than continuous MAY be safer.

The oncologists tell me that f you're hormonal negative, it is okay to keep menstrating and not take an anti-estrogen. So that makes me wonder if you are hormonal negative, wouldn't logically HRT seem okay? It's all complex. I know that the HABITS trial indicates that HRT increases bc risk. However, other trials indicate that HRT doesn't increase bc, ad some trials even indicate that HRT has lower risks than no use, which seems odd. I do think what stage you were at diagnosis effects the outcome of HRT use. I certainly don't see any risk associated with something as low stage as DCIS with masectomy, which essentially has no risk of relapse. I don't know about higher stages, though. All I can say, is the results are mixed and can make comprehension of it all VERY difficult.

GREAT ARTICLE ON HRT:
http://www.cbs.com/cbs_cares/menopau...chiff_02.shtml


Tibolone, a European Drug, and another Pharmaceutical Alternatives to HRT :
http://www.health.harvard.edu/newswe...n_tibolone.htm
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Old 06-12-2007, 08:17 AM   #8
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At least something still works...

I KNEW you were a guy. That's all I will say here. I am laughing as I type.

Have you heard of Dr Kenneth Conklin at UCLA? Am newly under his guidance regarding diet and supplements. He is also passionate about the omega's. And also about CO-Q-10 which I now take in a delicious chewable formula. Almost as good as my Flintstones. I am now dairy free, gluten free, sugar free (except the whole marshmallow thing) and continue to be organic, free range, etc. etc.

Want to give my body it's best shot at getting this under control. Am still reeling from the stage four-ness of my diagnosis. In most ways I'm still just me but it's for sure hanging over my head.

All kidding aside, thank you for your posts. They bring a very male energy to the site, very calm, direct, level and to the point. Concise, fact-filled and informative. Even on-line, your style comes through. Thanks for posting such important information!
--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 06-12-2007, 10:31 AM   #9
suzan w
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thank you Robin for the link to the CBS article. It was very informative! I am still confused about the whole estrogen thing as I DID take hormone replacement therapy for about 6 years...with NO family history of any cancer at all...and then was dx'd with breast cancer...go figure! I guess family history has to start somewhere~ I always had a 'gut feeling' that HRT was not a good thing for me but I have osteoporosis so that was the reasoning behind it.
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age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 06-12-2007, 01:10 PM   #10
RobinP
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Your welcome, Susan. I love the photos of your dog, it looks like my childhood pet. Sorry, you got bc and feel its due to hormones. Don't burden yourself with guilt though. I think Dr. Susan Love, says that those who get bc while on HRT do so not because HRT caused their bc, but because they would have gotten bc eventually, but HRT just excelerates it so that it shows up sooner.
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Old 06-12-2007, 03:10 PM   #11
R.B.
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Progesterone and BC - even more controversial but thought provoking

Again the usual caveat. I came across this looking for something else. It is cogently written not associated with any advertising, and seems to be from the heart.

Any thoughts or questions you must talk to your advisor.

I simply post this in the interest of wide ranging debate. I am not in a position to judge if it is right or wrong.

RB


ABSTRACT

http://www.project-aware.org/About/who.shtml

"Mission Statement

Founded in 1997, Project AWARE is a nonprofit organization dedicated to providing menopausal and premenopausal women with complete and comprehensive information regarding all resources, therapies, and research data currently available, so that armed with this knowledge, women can make informed decisions regarding every healthcare option.

Our fervent hope is that the following goals will further this ideal."

http://www.project-aware.org/Health/...-progest.shtml

How Progesterone Protects Against Breast Cancer

from "Hormones Without Fear" by Ivy Greenwell

"Even this is not yet full picture, and one could still discuss proto-oncogenes, epidemiological studies, and various animal and clinical studies. However, just on the basis of its physiological action the evidence is pretty overwhelming that progesterone does indeed protect against breast cancer. Usually one sees this statement: "protects against endometrial cancer" and the more tentative "helps protect against breast cancer.""
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Old 06-13-2007, 04:03 AM   #12
R.B.
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Thank Flori.

I checked your Onc out on google - looks like he is a "authority"

Diet certainly is "Bedrock", I am sure about the size of the T bones though.

Thank you for the kind words - always good to know I am not perceived as barking.

RB
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