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Old 08-31-2011, 08:15 AM   #1
kykeon22
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Join Date: Aug 2011
Posts: 51
Vaginal Estriol Cream

Hi everybody,

I have some doubts that are hunting me and keep me in a thoughtful state. Can I share them with you? maybe someone on this forum could help me in disentangling them or at least get rid of them.

Does aynone knows estriol vaginal cream? I have read that in USA it's not on the market, but here in Europe it is available. My mother used it to cure the dryness of the endometrium. Now I have a doubt about it being safe. On the leaflet accompanying the cream it's written clear as the light of the day that the cream shouldn't be used by patients suffering from a breast cancer hormone receptive. The cream was given by the gyno to my mom. We didn't trust her, because nearly 10 years ago she gave my mom hormones therapy to alleviate the symptomes of menoupause though my mother always said to her that her breast felt as swollen and hard as soccer balls the gyno always told her that the pills were safe and that she should take them. As a result five years later my mom was diagnosed with a breast cancer stage IV with nodules as large as 5 cm in the left breast and metastasis in the lung and in the liver. Strangely enough the cancer was strongly sensitive to the hormones. And my mother has given birth to 9 babies, she has been pregnat for nine times nine months. Theoretically she was safe from breast cancer because everybody knows pregnancy acts as a proteciont against breast cancer. But she was diagnosed with a very advanced breast cancer anyway. Luckily enough herceptin and arimidex did their magic on her tumor and she went NED. Then last year she changed therapy and went on tyverb and navalbine for a recurrence in the lung. She wasn't taking arimidex anymore. I was a little concerned because her tumor was strongly receptive to the hormones, i was thinking that we were not using all the tools available to kill the tumor. But luckily enough again the therapy proved its efficacy and she went NED. In May ot this year her PET Scan was clear and the tumor makers showed no activity of the tumor. We were all very happy and life was nice. Then my mom had little drops of blood coming down her vagina. Concerned and very reluctantly we went to the gyno (we were trying to avoid her). The gyno af first suspected a tumor of the endometrium which scared the hell out of us, but then furher analysis showed she was wrong. The endometrium was just dry because of lack of estrogen. She then gave us this cream containing estriol, a type of estrogen far less potent and far less harmful than estradiol, the hormone which on the contrary is hold as responsable for breast cancer. Of corse we couldn't trust her, and so before applying the cream we asked the onco about the safety of the cream. to me the onco appeared quite skeptical and maybe not wanting to contradict the opionion of a colleagues doctor reassured us about the safety of the cream. He said that the amount of estriol was very very very little, and that it would be absorbed locally not reaching the breast. To me he didn't appear much convinced of his own words, in fact he then added. "but don't use it too much, i mean, just one month, and then stop. See if the bleeding stops".

My mom applied the cream, she was feeling well, though sometimes she felt her breasts were slightly harder. My doubt about the cream never stopped, but I trusted the onco. She used the cream for about 2 months, from mid june to mid august when the last tumor marker test showed that the tumor was back. Scared from that she stopped the twice a week application of the estriol vaginal cream. The last Pet Scan showed a local progression of the disease at the level of the lungs. The onco changed the therapy, adding an antracycline and aromasin to the pills of the tyverb.
So why does he add aromasin now? why now does he think that we need to stop estrogen from feeding the tumor?

During our last meeting I told the onco tha my mom had stopped applying the cream because she was worried it had caused the tumor to grow back. He didn't answer directly, but told us that it was okay to stop with it, he appeared relieved that we had taken the decision by ourselves and then told us, almost insisted, that we should see the gyno again for a check. Though my mom doesn't feel the need for a check and she is scared and angry with her gyno to the point that she is pondering about seeing another gyno.

For my part I'm almost convinced that the estriol cream contributed to the tumor to grow back, though I cannot telll it for sure. The onco behevior seems to comfirm my suspects. I know that in this field there is nothing for sure, and that most of the time is just a trial and error procedure. I don't blame the onco, he thought that the estriol was safe which it wasn't. But I'm angry with the gyno. Why prescribe hormones therapy to alleviate the symptom of the menopause? The menopause is just a natural process of life. Why do the gyno feel the need to disrupt that natural process by giving hormones that by now are well known to be very harmfull if not perfectly well balanced? Human being has done without hormone therapy for millions of year and they have just done fine.That's crazy. That's illogic and very stupid.
__________________
Son of Ha

She has been dignosed in February 2008 BC state IV, left breast multiple nodes size 5 cm, mets lungs and liver. Er+ Pr+ Her neu +++.
3/2008 - 10/2010 Herceptin + Aramidex NED
10/2010 recurrence lung met, pleural effusion, toracentesis
11/2010- Tyverb + Navalbine NED
08/2011 CA-15-3 = 90 scan
08/2011 Scan revealed reccurrence lung met, tiny metastasis on the pleura and pleural effusion.
4 pills tyverb, mytoxantrone once ever three weeks, and Aromasin.
Tykerb and taxol, sever allergic reaction
Tykerb taxotere
Herceptin, perjeta, gemcitabina
C- diff, bad diarrea
Halevan and tamoxifen, tm down from 1200 to 130

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Old 08-31-2011, 08:34 AM   #2
snolan
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Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
Re: Vaginal Estriol Cream

My onco suggested Replense, which helped me. I didn't have to use it often.
I feel once you have lost faith in a Dr, try another. It doesn't sound like the gyno is stearing your mom in the right direction.
__________________
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 08-31-2011, 03:25 PM   #3
hutchibk
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Re: Vaginal Estriol Cream

My Onc requires me to use Estring estrogen ring, and not Estrace cream. He believes the cream has too much of a systemic increase in estrogen. The ring doesn't.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 09-01-2011, 01:49 AM   #4
kykeon22
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Join Date: Aug 2011
Posts: 51
Re: Vaginal Estriol Cream

thank you for your advices and support,

we are going to push the gyno for some cream without estrogen, like replense.
__________________
Son of Ha

She has been dignosed in February 2008 BC state IV, left breast multiple nodes size 5 cm, mets lungs and liver. Er+ Pr+ Her neu +++.
3/2008 - 10/2010 Herceptin + Aramidex NED
10/2010 recurrence lung met, pleural effusion, toracentesis
11/2010- Tyverb + Navalbine NED
08/2011 CA-15-3 = 90 scan
08/2011 Scan revealed reccurrence lung met, tiny metastasis on the pleura and pleural effusion.
4 pills tyverb, mytoxantrone once ever three weeks, and Aromasin.
Tykerb and taxol, sever allergic reaction
Tykerb taxotere
Herceptin, perjeta, gemcitabina
C- diff, bad diarrea
Halevan and tamoxifen, tm down from 1200 to 130

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Old 09-01-2011, 08:51 AM   #5
snolan
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Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
Re: Vaginal Estriol Cream

You can purchase replense at the grocery store.
__________________
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 09-03-2011, 04:49 PM   #6
Debbie L.
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Posts: 463
Re: Vaginal Estriol Cream

A few comments on this thread.

First -- Rich, how do you make the quote/comment thing work? You must know some programming language? I participate in forums where I can get the quote boxes, but this forum is not one of them (mac/firefox).

Even the estring can cause transient elevations in measurable systemic estrogen, upon first use (the estrogen-starved tissue is an efficient sponge, apparently). The creams (estradiol, etc), IF USED IN TYPICALLY-PRESCRIBED DOSES, do increase systemic estrogen more than the estring. But the advantage to the creams (in my opinion) is that they can be titrated. You can use just a dab, rather than the applicator dose, for example. You can stop using entirely when things seem to be okay, and start up again (cautiously) as needed. For son-of-Ha's questions, I'd say it depends a LOT on the amount of cream used.

I tried ALL the options, short of the estrogen preparations. Replens may be fine for garden-variety menopause, but it was not nearly enough for the vaginal desert I experienced, caused by Arimidex.

It is, alas -- more than just lubrication. In the total estrogen starvation that comes with AI use, the tissue itself thins and changes -- becoming so-easily damaged that moisture/lubrication is only part of the trouble.

I don't have any answers, but I encourage those who are having issues to speak up. If we are not honest and upfront about this issue, how can we expect researchers to investigate and (perhaps) find answers to help us?

That said, son-of-ha raises the other perspective. Maybe there is not an answer to this issue that would allow us to have both a fulfilling sexual life, AND to control our cancer. At least not at this time. But if that is the case, that choice should (imho) be on the table. We should be told that this treatment might save our life, but on the other hand, this treatment might ruin our ability to participate in intercourse as we previously knew it. Probably most people would still choose potentially life-saving treatment. But it would be true informed consent, and we would be more eager to push for answers (treatment) that could leave us both alive and sexually-functional.
__________________
3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
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Old 09-06-2011, 01:15 PM   #7
rondo
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Location: Monterey County, CA
Posts: 37
Re: Vaginal Estriol Cream

ESTRIOL vaginal cream is not the same as ESTRADIOL cream. Estriol can be obtained with your doctor's Rx from a compounding pharmacy. The standard warnings are attached to all estrogen products although those relating to breast cancer really are only pertinent to estradiol, which stimulates breast cell growth. Estriol has not been found to stiulate breast tissue and so theoretically at least it should be much safer than estradiol for bc survivors. This is,, of course controversial, especially among docs who don't bother to differentiate between different estrogens but lump them all together. Estriol cream has been really helpful for me for vaginal problems. You can monitor your levels with lab testing and prove to yourself it isn't absorbed systemically. With my history I feel quite safe using this product and my doctor monitor me closely but it's a very personal choice.
__________________
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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Old 09-07-2011, 06:49 AM   #8
Hopeful
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Re: Vaginal Estriol Cream

Quote:
First -- Rich, how do you make the quote/comment thing work? You must know some programming language? I participate in forums where I can get the quote boxes, but this forum is not one of them (mac/firefox).


I am not Rich, but I can answer this question. The automatic quote response feature is not active on this BB. You need to write it in html.
Before the quoted language, you type the word QUOTE enclosed in brackets. At the end of the quoted language, you type /QUOTE, also enclosed in brackets. Hope this helps.

Hopeful
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Old 09-07-2011, 10:10 AM   #9
AlaskaAngel
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Lies and Informed Consent

Not providing true informed consent is a very insidious form of lying. In regard to this issue, it is particularly vicious because it comes in the form of medical providers who are wearing the sheild of their license and educational qualifications, which provide the trojan horse for them to deal dishonestly and carelessly with intensely private matters under a trust relationship to begin with.

Given that it takes much organized developed research to come up with the treatments, is there any really good reason why, for example, they have not cared enough about the outcome to have adequately done the accompanying research for us to ameliorate the physical dryness problem? Or why, for example, there has not been research done to identify our personal pheromones prior to treatment so that possibly some manner of replacement to assist us afterward would be possible?

As suggested, they are unlikely to address this adequately unless WE make it a basic essential requirement for the development of treatments.

AlaskaAngel
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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Old 09-07-2011, 10:47 AM   #10
AlaskaAngel
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Posts: 2,018
Question Seeking more genuine solutions to the problems

I'm sitting here looking at the handout that was provided by my cancer center to me when I attended the orientation "pre-chemo" Q/A session this past year (as a postchemo patient now 9 years out).There are several Q/A's dealing with S/E's in the handout, but still not a single Q/A mentioning any potential sexual aspects, and nothing other than vomiting, fatigue, etc.

When I attended the session, the nurse conducting the session commented that perhaps my "situation" was uncommon.

I think I will create a redesigned identical-appearing Q/A handout, to include some Q/A's about these intimate issues, and send it back to the department conducting the session, with copies to ALL oncologists at the cancer center AND the psych support center that limits appointments to those no more than 2 years out from treatment, AND to ALL the OB-GYNs connected to that hospital.

Anyone who might have similar concerns might try doing the same.

A.A.
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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