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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

RB
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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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Love and Hugs, Vickie

Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
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
Hopeful
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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 06-11-2007, 10:09 AM   #7
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   #8
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   #9
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
__________________
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   #10
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   #11
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   #12
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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Old 06-12-2007, 07:19 AM   #13
RobinP
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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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Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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Old 06-12-2007, 08:17 AM   #14
SoCalGal
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Location: LA LA Land
Posts: 1,607
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
__________________
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   #15
suzan w
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Posts: 1,744
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.
__________________
Suzan W.
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   #16
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   #17
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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 06-12-2007, 03:38 PM   #18
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Thank you RB, for starting this wonderful discussion.

TESTOSTERONE: Donna, my onc also mentioned that testosterone breaks down into estrogen (and as RB carefully noted, DHEA is not a good idea either). So I chose to try to see if I could contribute genuinely to this question. In 2004 I was a participant in the clinical trial testing whether or not the use of low-dose testosterone was harmful for those with bc. I have tried repeatedly to get the results of that trial without success. Today I tried again by phone contact with the trial site where I participated, without success. I will write a letter again to try to find out what, if anything, they learned from the trial. (If that doesn't work, I will see if my congressional office can tackle this.)

BIO-IDENTICALS: "I took estradiol [or rather, estriol], progesterone, and testosterone. I think it would be unwise to call these bio-identicals protective." Well, I think the key here is not that the bio-identicals are not protective or are unwise, but rather that maybe it is important to take a better look at what proportion of each bio-identical hormone should be used for each woman's situation. Because there is so little documented, clinical-trial based information about natural substances due to the lack of economic support for them by profit, the use of bio-identicals may fail because of lack of documented data on how to best balance them. As Robin mentioned to me, compounding can end up being less accurate as well.

AlaskaAngel

ESTRIOL vs ESTRADIOL: I was given an Rx for estriol vaginal cream by an OB-GYN. I literally could not use it long enough to find out what effect it might have because the vagina was so tight and dry and friable and easily torn that applying it caused a too much discomfort and bleeding. So I am on the Estring. But my question is, why isn't there enough interest for the production of a vaginal ring that contains estriol instead of estradiol? Is it the question of making more profit by using the horse variety of estradiol?

Robin, are the studies that talk about the use of progesterone with estrogen increasing the risk those studies that are based on synthetic progesterone, or bio-identical progesterone?

AlaskaAngel
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Old 06-12-2007, 10:01 PM   #19
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One of the largest studies was done the WHI. It would seem logical that most of those women took premarin or prempo since these are the most popular in the USA for HRT. However, I'm not sure. In the WHI, the mix of estrogen and progesterone were had more bc related events than estrogen alone.
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Old 06-12-2007, 10:03 PM   #20
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One of the largest studies was done to look at estrogen and progesterone was the WHI. It would seem logical that most of those women would have taken premarin or prempo, synthetic forms of hormone replacement, since these are the most popular in the USA for HRT. However, I'm not sure. In the WHI, the mix of estrogen and progesterone were had more bc related events than estrogen alone.
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