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Old 11-14-2009, 09:53 AM   #1
SoCalGal
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testosterone - CAN IT HELP?

My oncologist looked online and saw a study out of San Francisco, I think it was UCSF, that used testosterone in treating vaginal dryness & libido probs in woman with ER POS breast cancer. How do I find out what the early clinical trial research is showing, side effects, good results, etc? I hate to try something new and find out the hard way that this gives more headaches than estrogen, or that I will now grow a beard and mustache. My doc was pretty low key, said try it and see if it helps. I wish she'd try it first and report back to me

Has anyone ever used testosterone cream? I am ER/PR negative, but using estrogen cream was giving me migraine problems big time. Totally solved the va-j-j probs, except created tremendous headache probs, so it didn't matter that I was "open for business".

Has anyone who is ER/PR negative considered using the estrogen patch? That is my latest thinking unless I decide to try this testosterone.

I want a healthy sex life, and right now it's a challenge due to physical discomfort. I'm tired of having to "be creative". I just wanna...well, you sisters understand. It's such a rarely discussed by the doctors, but important side effect from treatment. It is all about QUALITY OF LIFE.

Here's the clinical trial recipe:
Testosterone Cream 1% micronized in velvachol - 0.5 gm of cream vaginally each night for two weeks, then 3 times a week for total of 12 weeks of treatment

Thanks for your help. Funny how I won't make a move unless I get feedback from you all!
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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 11-14-2009, 02:23 PM   #2
tricia keegan
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Re: testosterone - CAN IT HELP?

Sorry I can't help Flori, a friend of mine was on testosterone shots or pills to give her a break from chemo when her cancer was very advanced. Obviously the cream would have far less side effects or risk factor's but she was warned her voice would get lower and facial hair would increase.
It did relieve a lot of her symptoms though as her body was worn out from eleven years of chemo.
Hope someone can help you and do sympathize, thankfully despite my early ooph and tx vaginal dryness is one side effect I've managed to dodge so far
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 11-14-2009, 10:20 PM   #3
Rich66
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Re: testosterone - CAN IT HELP?

Not sure how to interpret the info but testosterone/androgens seem to be studies in BC:


Steroids. 2009 Oct 24. [Epub ahead of print]
Conjugated and non-conjugated androgens differentially modulate specific early gene transcription in breast cancer in a cell-specific manner.

Notas G, Pelekanou V, Castanas E, Kampa M.
Laboratory of Experimental Endocrinology, University of Crete, School of Medicine, Heraklion GR-71003, Greece.
The role of androgen in breast cancer development is not fully understood, although androgen receptors (ARs) have been identified in breast cancer clinical samples and cell lines. However the whole spectrum of androgen actions cannot be accounted to the classic AR activation and the possible existence of a cell surface-AR has been suggested. Indeed, androgen, like all steroids, has been reported to trigger membrane-initiated signaling activity and exert specific actions, including ion channels and kinase signaling pathway activation, ultimately affecting gene expression. However, the molecular nature of membrane androgen sites represents another major persisting question. In the present study, we investigated early transcriptional effects of testosterone and the impermeable testosterone-BSA conjugate, in two breast cancer cell lines (T47D and MDA-MB-231), in an attempt to decipher specific genes modified in each case, providing evidences about specific membrane-initiating actions. Our data indicate that the two agents affect the expression of several genes. A group of genes were commonly affected while others were uniquely modified by each agent, including interaction with growth factors and K(+)-channels. In MDA-MB-231 cells, that are AR negative, the majority of genes affected by testosterone were also affected by testosterone-BSA indicating a membrane-initiated action. Subsequent analysis revealed that the two agents trigger different molecular pathways and cellular/molecular functions, suggestive of a molecular or functional heterogeneity of membrane and intracellular AR. In addition, the reported phenotypic interactions of membrane-acting androgen with growth factor were verified at the transcriptomic level, as well as their ion channel-modifying effects. Finally an interesting interplay between membrane-acting androgen with inflammation-related molecules, with potential clinical implications was revealed.

PMID: 19857505 [PubMed - as supplied by publisher]




Exp Cell Res. 2005 Jul 1;307(1):41-51. Epub 2005 Apr 7.
Opposing effects of estradiol- and testosterone-membrane binding sites on T47D breast cancer cell apoptosis.

Kampa M, Nifli AP, Charalampopoulos I, Alexaki VI, Theodoropoulos PA, Stathopoulos EN, Gravanis A, Castanas E.
Department of Experimental Endocrinology, University of Crete, School of Medicine, P.O. Box 2208, Heraklion, GR-71003, Greece.
Classical steroid mode of action involves binding to intracellular receptors, the later acting as ligand-activated nuclear transcription factors. Recently, membrane sites for different steroids have been also identified, mediating rapid, non-genomic, steroid actions. Membrane sites for estrogen and androgen have been found in a number of different cell types, bearing or not classical intracellular receptors. In the present study, with the use of radioligand binding, flow cytometry and confocal laser microscopy, we report that T47D human breast cancer cells express specific and saturable membrane receptors for both estrogen (K(D) 4.06 +/- 3.31 nM) and androgen (K(D) 7.64 +/- 3.15 nM). Upon activation with BSA-conjugated, non-permeable ligands (E(2)-BSA and testosterone-BSA), membrane estrogen receptors protect cells from serum-deprivation-induced apoptosis, while androgen receptors induce apoptosis in serum-supplemented T47D cells. In addition, co-incubation of cells with a fixed concentration of one steroid and varying concentrations of the other reversed the abovementioned effect (apoptosis for androgen, and anti-apoptosis for E(2)), suggesting that the fate of the cell depends on the relative concentration of either steroid in the culture medium. We also report the identification of membrane receptors for E(2) and androgen in biopsy slides from breast cancer patients. Both sites are expressed, with the staining for membrane E(2) being strongly present in ER-negative, less differentiated, more aggressive tumors. These findings suggest that aromatase inhibitors may exert their beneficial effects on breast cancer by also propagating the metabolism of local steroids towards androgen, inducing thus cell apoptosis through membrane androgen receptor activation.

PMID: 15922725 [PubMed - indexed for MEDLINE]
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Old 11-14-2009, 11:15 PM   #4
Merridith
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Re: testosterone - CAN IT HELP?

I've used the testosterone cream. It didn't help. Although for some weird reason, it seemed to work (with libido) the first time I used it. But not after. No side effects.

For vaginal dryness, I am using VagiFem. That works great.
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Old 11-15-2009, 06:54 AM   #5
Sheila
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Re: testosterone - CAN IT HELP?

Flori
I am like you, i want to know more about all the side effects...what good is it if you feel amazingly sexy right after you shave your beard and mostouche!
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 11-15-2009, 08:07 AM   #6
LoriE
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Re: testosterone - CAN IT HELP?

My doc won't give me anything with estrogen even though I was ER-PR-. And I don't want to shave, either. I volunteered to be part of a research study at OSU, but haven't heard anything. Can't believe they can put a man on the moon, but they can't solve this problem for ladies like us!
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Diagnosed 07/05, Stage 1
Extensive DCIS, .5 mm invasive
Mast
No nodes.
10/05 4 A/C & 1 yr of Herceptin
06 Proph Mast
Lat Flap Recon - failed on one side, replaced w/expander
NED
HER + 3, ER-, PR-
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Old 11-15-2009, 09:12 AM   #7
Debbie L.
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Re: testosterone - CAN IT HELP?

Hi Flori,

Yes, we hear you. You must see us - nodding our heads (shaking our heads, we're frustrated, too!). I tried every moisturizer ever made, including replens - and it was not equal to the task.

Tiny bits of estrogen cream (estradiol) has made some difference, but I think I waited too long and there had already been some permanent damage. And yes, a few times it has seemed to trigger a migraine (I get migraines very rarely so it's pretty suspicious to me that it has happened twice, the morning of my little (and I mean LITTLE) dab of estrogen).

So there are several things happening at once, for most of us, when we're trying to make this decision:

1. Will local treatment help the dryness/fragile tissue? Yes, probably both estrogen and testosterone will help with that.

2. Will local treatment help with libido? I don't think estrogen does, particularly - although libido could certainly be suppressed by anticipation of pain so relieving that part of it might improve libido. Testosterone seems to improve libido for some, and not at all for others.

3. And lastly - will using a local hormonal treatment affect the cancer issue? Does it matter that my cancer was ERPR positive or negative? For estrogen creams/pills(vagifem), it's an indefinite, mixed report. Small amounts, once established, do not seem to raise serum estrogen levels much - not beyond, for example, what would be normal for a post-menopausal woman. Estring has been reported to do the best here, with the least rise in serum estrogen levels. (It worked for me for awhile -- several years -- but then it seemed it wasn't enough). I think all studies report a surge in serum levels initially, when treatment is first begun, as the dry tissue literally sucks it up and sends it off -- but as the tissue normalizes, systemic estrogen levels apparently level out (at a very low level, for estring especially). Full-dose creams do raise levels more, but it's possible to get results with far less than full-dose. And again, we do not really know that there's harm in any particular level. So we do have "some" information about local estrogen use r/t serum estrogen levels.

BUT we don't have any evidence that those changes in serum levels have any effect on cancer. Not on ERPR+ cancer, not on ERPR- cancer - we just don't have any evidence, only theory. So that's a bit of a crap shoot already, and then when we begin to talk about testosterone - it gets even muddier. As Rich posted - there may be a role for androgen receptors in some breast cancer. But the bigger issue I think is that aromatase (that enzyme we inhibit with our AI's) converts testosterone to estrogen - so is that a problem? In theory, it sounds like it could be. But there's no evidence to know either way. And then another question - what if we're taking AI's, so the conversion (in theory) isn't happening?

This is just so muddy. Quality of life is so important. Frustrating!

It seems to me that short-term, it can't hurt to try testosterone. Maybe it won't help at all and then you won't have to decide if you're willing to take a (probably small to nonexistent) risk in using it. If it does work - well then you still have to decide if you think it's worth the unknown possible risk (but at least you'll have some fun in the meantime).

I do think it would help if we were more vocal. So many times I talk to women who are told "you just need to make a few more accommodations, use some moisturizer, allow more foreplay time, yada yada yada". And they did not say to the provider: "I HAVE TRIED THAT AND IT DOESN'T HELP". They were embarrassed so they said "Okay, thank you". (I did that, too). Us being more vocal probably won't help US, because finding answers takes a long time. But down the line, it could help others - because the more we point out the need for better answers, the more likely it is that research will get started to help us.

Debbie Laxague
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Old 11-15-2009, 08:52 PM   #8
suzan w
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Re: testosterone - CAN IT HELP?

tried testosterone cream...nope
nothing seems to work...darn
so frustrating.........however, life IS good!!!
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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 11-16-2009, 03:21 PM   #9
rondo
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Re: testosterone - CAN IT HELP?

I have found that testosterone cream is the ONLY thing that helped with libido. It is still working for me after several years. It works a lot better if you don't use it daily. I use it 5 days on and 2 days off-my doc said that way the receptors aren't constantly saturated. I use tiny doses; you will know if you take too much and the effects are reversible if you do. I know to back off if I get acne or become agrumentative.
Also, since my bc diagnosis, I stopped estradiol cream (the most comnmon type prescribed) and am using ESTRIOL, which is a weaker estrogen. I feel it is safer for me. It has to be compounded as there is no FDA approved product. Progesterone is a must, as it may be bc protective and has other benefits, including balancing the other hormones.
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IDC 6 mm l.b. 3/08 age 49; ER <1%+; PR -; KI67 40%; HER2 +++by FISH; lumpectomy/snb 4/08; extensive dcis found at surgery (didn't show in bx or mammo); micromet in sn; MRI breasts and chest 4/08-NED; re-excision l.b. 5/08; refused axillary node dissection; no ca found in re-excision tissue. TCH q 3 wk x 6 finished 10/08; whole breast rad x 7 wk finished 12/08; refused axillary and supraclavicular rad. Herceptin thru 6/09. Refused tamoxifen & aromatase inhibitors.
1/13 so far so good:-) have vestibular hypofunction from chemo but its all good since now officially on borrowed time!
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