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Topic: I WANT MY MOJO BACK!

Forum: Sex & Relationship Matters —

A safe place to talk candidly about how your romantic relationships and/or your sex life has changed following your diagnosis and treatment.

Posted on: Oct 17, 2004 12:45PM - edited Feb 9, 2016 12:04PM by Moderators

Mena wrote:

Hey girls,

You know, this loss of libido thing is just unnacceptable. I was in the chat room earlier today and mentioned it and man, you should've heard how many of us are experiencing this problem. I promised the ladies I'd post my rant, so here it comes (or....doesn't ).

If bc were a man's disease, not only would there be a cure for bc by now, but certainly there'd be a plethora of non-hormonal therapies available for whatever the female version is of "erectile dysfuntion". I don't think I'm exaggerating. I'll make the damn commercials myself (no pride here lol).

Prior to the news of my recurrence/mets (August) my husband and I had a phenomenal sex life. I absofreakinlutely loved making love to my husband. (Btw, I'm 43; and as part of tx for mets, I was chemically oopherized with Zoladex and take Femara daily).

I still enjoy loving my love. Emotionally, spiritually, mentally, I do. Even physically I still like it. It's just not rockin' my world, as they say, like it used to. I miss that. And I refuse to accept this as acceptable. It is not. If the genders were reversed, this would be the first &%$#* problem they'd address! Well, ok, the second.

I know the clinical reasons for the low libido, but there's got to be something out there for us that's not contraindicated with treatment. Here's what I've tried so far: a Zen approach; a "go w/the flow" attitude; a "get started and it'll all just kick in" mindset; a "try not to think about it at all" focus; et al.

I'm interested in hearing what the rest of you have to say about this matter, and I know it is an intimate one. But we're all sisters and I do hope some of you will share your experiences and whatever help you've found for missing mojo.

Thanks for letting me vent. God Bless.

Mena

****************************Addition from February 4, 2016***********************************

Hi All,

We've gone through a lot (not all) of the pages on this topic, and tried to compile your suggestions.

Do you feel that this is a complete list of what has been discussed here? Please help us make a comprehensive list of your ideas!


Member suggestions for helping the libido:

Watch romantic movie or soft-porn on Netflix

Romantic music

Watch porn or visit short videos on Tumblr, YouTube, or other internet site

A little wine, or other substance to help relax (e.g. medical marijuana)

Sexual photos

Massage and massage oils

Literotica: Erotic/sexual stories as an alternative to images

Super sexy lingerie or fun clothing

Have partner practice foreplay and/or oral sex

Practice masturbation on a regular basis

Mindfulness, i.e. focus on what your five senses are experiencing in the moment --To keep your thoughts from dwelling on cancer and scars


Member suggestions to improve vaginal moisture:

Coconut oil works best as a moisturizer (freeze small balls to make suppositories)

Vitamin E suppositories

Almond oil

Replens long-lasting moisturizer

Luvena vaginal moisturizer

Shea butter melted into olive oil at a 2:1 ratio

Cocoa butter

Olive oil

Gynatrof gel

DHEA vaginal suppositories

Tip to use an applicator to insert moisturizers and apply a few times a week.


Member suggestion for lubrication during sexual activity:

Astroglide Natural (free from glycerin, fragrance, flavorings, and hormones)

Slippery Stuff (free from glycerin and parabens)

K-Y warming Jelly

K-Y Sensual Silk Liquid (paraben-free)

K-Y Liquibeads

K-Y UltraGel (paraben-free)

Astroglide, X (silicone-based)

Platinum Wet (silicone-based)

Replens silky smooth lubricant (silicone-based)

Sliquid natural lubricants (free from DEA, gluten, glycerine, glycerol, parabens, PEG, propylene glycol, sorbitol & sulphates)


Additional member suggestion to reduce pain:

Topical Lidocaine solution for use at the entrance of the vagina


Member suggestion for sex toys:

Vibrators (e.g. Hitachi Magic Wand, Pink Dot Vibe, Pocket Rocket, the Rabbit)

Dildos for pleasure, to stretch the entrance, prevent vaginal atrophy and strengthen muscles


Member suggestion for estrogen or hormone-based treatments

(MUST discuss first with oncologists as not typically recommended for women who have had breast cancer)

Vagifem® (estradiol vaginal tablets) inserts

Testosterone patch or gel

ESTRING® (estradiol vaginal ring)

ESTRACE® CREAM (estradiol vaginal cream)

Scream Cream - contains a combination of prescription and non-prescription components described as blood flow enhancers and vasodiolators to apply to your clitoris (adding here, as it contains a bit of Testosterone- 0.25mg per dose)


Other member suggestions:

Kegel exercises to strengthen pelvic muscles

Pelvic physical therapy

Dilators to stretch the skin in your vaginal area and re-train the pelvic floor muscles to relax

Observe which antidepressant you take, and make necessary changes

MonaLisa Touch: A minimally invasive laser treatment for vaginal rejuvenation.

Easier if she "goes first".

Regular activity is important.

Read the book, COUPLES CONFRONTING CANCER: KEEPING YOUR RELATIONSHIP STRONG, by Fincammon & Bruss, published by the American Cancer Society.

Share this thread with your husband/lover to create a new bond of intimacy, normalize what others are going through and open communication.

Take a look at this resource: https://sexualityresources.com

Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Page 138 of 144 (4,296 results)

Posts 4111 - 4140 (4,296 total)

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May 17, 2019 09:10AM TWills wrote:

runor, that’s how I feel too lol. I’ve never been a risk taker, this feels so bizarre to even consider doing. I’ve also never been a sharer but for the love of Pete, this is a really sucky way to feel and if we can help each other we should! I actually saw the Dr yesterday that prescribed the stuff for me and wanted to confess that I got the bootlegged versionbut I just didn’t have the guts.

I’m not sure if I’m more scared of it working or not working lol and I’m not sure when I’ll try it, I just had fat grafting done a week ago and I wouldn’t want to pop and stitches!

Dx 11/2016, IDC, Left, 4cm, Stage IIB, Grade 3, 1/14 nodes, ER+/PR+, HER2- Surgery 12/12/2016 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Chemotherapy 2/2/2017 AC + T (Taxol) Surgery 7/9/2017 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 7/30/2017 Whole-breast: Breast, Chest wall Surgery 8/27/2017 Hormonal Therapy 11/8/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/2/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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May 21, 2019 02:11PM ajbclan wrote:

Ok bouncing around on this thread....seems like Hyalo Gyn has more positive feedback then Ravaree? I guess I need to get into a daily habit of some kind of moisturizer.

Dx 8/9/16 with "multiple masses", chemo from 8/24/16 to 12/14/16- PCR. BMX w/TE: 1/31/2017; Exchange-9/18/17. Dealt with blood clot, cellulitis and another infection. Variance on PALB2 gene. Dx 8/9/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2- Chemotherapy 8/23/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 1/30/2017 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 12/18/2018 Arimidex (anastrozole), Femara (letrozole)
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May 21, 2019 02:18PM TWills wrote:

I felt like the HaloGyn helped me, when I used it anyway. I’m the worst with remembering or making the effort to use things like that.

Dx 11/2016, IDC, Left, 4cm, Stage IIB, Grade 3, 1/14 nodes, ER+/PR+, HER2- Surgery 12/12/2016 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Chemotherapy 2/2/2017 AC + T (Taxol) Surgery 7/9/2017 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 7/30/2017 Whole-breast: Breast, Chest wall Surgery 8/27/2017 Hormonal Therapy 11/8/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/2/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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May 21, 2019 02:40PM jaycee49 wrote:

abjclan, to me, the big difference is price. Revaree is $55 for 10 inserts ($62 on Amazon). Hyalo Gyn is $25 - $32 for a 30 day supply depending on how you buy it. I bought three tubes for $25 each (the deal when you buy three). It is a gel coming with applicators (which I hate thus I haven't used it yet). So I can't tell you how it works. Just price and application method. I really like inserts (suppositories). If I were to try something for the first time between these two, I'd choose Hyalo Gyn just because of price. I just rediscovered Luvena. I used to think it was expensive before I started buying all these even more expensive products. It comes in an applicator (like Replens) but it is rather liquid so runs out on first trip to the bathroom. That happens to me about two hours after I go to bed. If you can make it more like four hours, you would get the full effect. My favorite is still Premeno Duo.

But the only way for these things to work is to USE them on a regular basis. I use something almost every night.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/4/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/4/2014 Herceptin (trastuzumab) Chemotherapy 8/4/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/14/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/31/2016 Femara (letrozole) Targeted Therapy 3/31/2016 Ibrance (palbociclib)
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May 21, 2019 05:09PM SurvivorNovember2017 wrote:

Mena, I am with you girl!!! I have really lost my libido as well. When we do try, I can't reach climax. We have used toys, lubricants to make it easier and then boom!!! a hot flash will hit or I just plain can't do it. It is very hard on me and my husband doesn't quite understand that just because the cancer is gone, doesn't mean the treatment is over. Having to take Tamoxifen for 5 years is a hard one to handle. I am through almost 2 years of it tho....... looking forward to the end of that. On top of all of this, I was 56 when diagnosed and beginning to have menopause. I am now in full blown menopause and it is a pain in the butt!!

Keep hanging in there.

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May 23, 2019 10:25AM Pamela23 wrote:

I am going to the GYN today to have a hysterosonogram to check the uterine lining after being on tamoxifen for a year (well, 10mg most days!!). I 'm also going to bring up the issue that I haven't had feeling in my clitoral area since chemos 2.5 years ago. I thought it was the chemo but I was googling it yesterday and diagnosed myself as having clitoral atrophy. Yep, all the signs are there. Shrunken and numb. I was ECSTATIC to see it's reversible with hormone cream. I've been on Estrace for about 8 months--insert about every 4-5 days which took the pain away, but no feeling or pleasure on the inside. I always take a little extra cream and rub it into the outside surrounding tissues but haven't noticed anything. Maybe I need to do it more often or need a stronger amount of cream besides .01%. If I could reverse this, it would be life altering. I lost my taste after chemo so my pleasure bucket is completely dry!! This has definitely given me hope, and isn't that what we all are looking for?

9/15/2016, IDC, Left, 3mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/6/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/20/2017
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May 24, 2019 03:37PM 2002chickadee wrote:

Hi all, I visited with an NP at memorial sloan kettering (where I'm treated), and she said that they see loads of breast cancer patients on AI's with vaginal issues. A few tidbits that might be useful to share, although I know some of this has been said on this thread already:

-the sooner you start addressing the issues the better

-almost everything related to pain and discomfort sounds reversible with time and attention to treating it. Libido sounds more complicated. Like it's hard to get aroused when you're worrying about pain! So sometimes solving pain solves libido. Sometimes other things required. She strongly recommended getting a vibrator for clitoral stimulation (even though I'm not having problems with clitorial stimulation specifically).

-they recommend Hyalogen, and using it at least 4x/week.

-in addition to inserting and injecting the cream like using a tampon, rub some around the opening of the vagina (inside the labia)

-silicone and natural oil lubricants are generally recommended over water based because they last longer.

-local estrogen creams are not off limits, although we should start with the non-estrogen treatments and see if those help. If estrogen is necessary it becomes a conversation with my oncologist, but in general they have been studied and can be used safely in most cases. There is a new one that's lower dose coming on the market soon. They raise the levels in the blood stream very short term (2 weeks) but not long term.

-the goal is ZERO pain and discomfort during intercourse, which made me very glad because I was starting to resign myself to it never going away

-this has some helpful info too! https://www.mskcc.org/cancer-care/patient-educatio...


DX'ed at age 41 on my first mammogram Dx 1/11/2018, IDC, Right, Stage IA, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 2/6/2018 Mastectomy: Right; Reconstruction (right): DIEP flap Chemotherapy 3/23/2018 CMF Dx 9/2018, IDC, Right, <1cm, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy: Right Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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May 24, 2019 04:14PM HikingLady wrote:

Hello - chiming in to share what my OBGYN and oncological NP have guided me on. Age 61, on Anastrozole. I'd like to add sex back into my life, now that major treatment and surgeries are behind me. Vaginal pain with intercourse has been a huge obstacle. DH is patient and kind---we'll get through this together, is his attitude.

  • coconut oil--applied everywhere inside and out
  • Estradiol cream (this is okayed by my MO, as is sometimes the case, as noted above by 2002chickadee --Rx) also inside and out (vulva, rectal tissue, etc + vagina) as dosage instructs, 3x weekly--better elasticity of tissue around my urethra because of this now keeps me from leaking a drop of urine sometimes, which used to happen when I sneezed, etc. so that's an added QOL thing that I appreciate about this medication
  • "Use it or lose it" as far as elasticity for me meant starting over on stretching. I didn't use the dilators which others have recommended, but I found (online, from China!) a silicone/comfortable SexRabbit vibrator. Shape and size has worked to gently and eventually be able to insert it fully, with some time and work on lubrication over several weeks.

DH and I have not tried vaginal intercourse for quite awhile, due to my discomfort. I am feeling very hopeful about resuming, because I seem to now accommodate the vibrator. We will use 'Glide' type non-water-based lubricant--I know that can help. I think SLOW and GENTLE will be our plan as we resume, and we will, once tissue seems recovered and more restored.

My OBGYN has also prescribed lidocaine gel--this is to numb particularly painful spots. I have tried it in the past, and the trick is to use very little, since numbing obviously has a down-side in sex!

Libido: I have less, and it takes a lot longer to get the motor fired up, but I can orgasm. Now that I have the vibrator to practice with, responsiveness and sensation are getting tuned up. I miss nipple stimulation---gone after BMX, and that's a loss.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 25, 2019 04:11AM runor wrote:

Don't know if this will be of use to anyone, seems rather random info, but here goes.

If I am going to have pain with intercourse, or bleeding, it happens at the same spot every time. I had a HUGE episiotomy when I had my daughter. The scar is epic. That is now where I have pain and sometimes bleed. That scar tissue is unyielding. It always was quite substantial but seems to have become even more..atrophied? brittle?.. with tamoxifen. It might be useful to note if pain on entry is always at the same spot and if so, is it where you had an episiotomy? SOmetimes I have to say to Hub, wrong angle, readjust the trajectory of entry - Houston we have a problem.

Speaking of libido, to be honest, I didn't have much of a libido before. Hub used to suggest sex and I'd say nah, I didn't have a shower today, I'm not clean, I prefer to only have sex when I'm clean. Then after a shower he'd suggest sex and I'd say, nah, I just had a shower and sex is going to mess everything up and make me gross so I prefer not to have sex after a shower. Hub used to complain this was a Catch - 22 problem to which I responded, at this rate you'll never catch anything so you can thank me for keeping you safe from potential contamination. Of course the side effect of tamoxifen that is utter brain failure doesn't help libido either. Now Hub will suggest sex and I say, that's nice, remind me again, who are you?

I really think the fact that I can have sex when the shower situation is just right and I remember who my husband is, is in part due to my twice a year Premarin applications. I have even stopped the constant drip, drip I used to have. I could be wrong about that but for now that's my best guess.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/4/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 25, 2019 12:22PM jaycee49 wrote:

runor, yeah, episiotomy. Had one of those, a big one. Can't see the scar, I don't think. I think just the process of having a baby could predispose us to having these issues.

Chickadee and HikingLady, all good ideas. All well-meaning healthcare providers. BUT, I know all that stuff. I had to figure it out on own because I don't have any good healthcare providers. BUT, what about stage IV??? Do any of them talk about that? My MO says no to any form of estrogen. I have been using the non-hormone stuff for years to some success. It has stopped working. I hurt all over down there. I can't sit comfortably and that's all I do. Sit. I can buy some kind of estrogen online with no rx but the contradiction returns. I'm taking a drug that suppresses estrogen and now I want to USE estrogen. Cognitive dissonance in the extreme. I'm seeing MO on Tues. and will bring it up AGAIN. My brain might explode (or my crotch).

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/4/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/4/2014 Herceptin (trastuzumab) Chemotherapy 8/4/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/14/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/31/2016 Femara (letrozole) Targeted Therapy 3/31/2016 Ibrance (palbociclib)
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May 25, 2019 04:02PM ShetlandPony wrote:

Jaycee, have you considered Intrarosa? It sounds like the safest choice to me. It is a precursor to a hormone, so is expected to only act on the local tissue. No studies in stage iv bc patients of course, and it comes with the usual history of bc warning on the package insert, but theoretically it should be safer than estrogen cream.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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May 26, 2019 10:57AM - edited May 26, 2019 11:34AM by jaycee49

Thanks, Shetland. I've looked at Intrarosa and counted it out for two reasons. It is REALLY expensive. It contains DHEA. My MO said DHEA might as well be estrogen. But now I am looking at products with both estrogen and DHEA. Desperation time. This is what I'm looking at right now. A line of products from a company called Bezwecken, a company I had heard of a while back. All available at Amazon without a prescription and fairly inexpensive. They have:

hydration cubes/ovules 1x 16 count with 1 mg estriol ($19.50)

hydration cubes/ovules 1x plus 16 count with 1 mg estriol plus 3.25 mg DHEA ($19.50)

hydration cubes/ovules 2x plus 16 count with 2 mg estriol plus 3.25 mg DHEA ($23.00)

I'm also thinking about the new generic Vagifem called Yuvafem with 10 mcg (0.01 mg) estradiol. This needs a prescription.

I'm going to show these options to my MO on Tues. It will be a zoo because of the holiday weekend. I may get too frustrated to bring it up, which is common for me. With several really long waits, I am usually too annoyed to discuss anything and just want to go home. Is this planned?

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/4/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/4/2014 Herceptin (trastuzumab) Chemotherapy 8/4/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/14/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/31/2016 Femara (letrozole) Targeted Therapy 3/31/2016 Ibrance (palbociclib)
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May 28, 2019 01:12PM 2002chickadee wrote:

jaycee49 there is a new estrogen option, either about to be released into the market or just released, which is a lower dose than 10mcg. That may be something your MO would okay.

DX'ed at age 41 on my first mammogram Dx 1/11/2018, IDC, Right, Stage IA, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 2/6/2018 Mastectomy: Right; Reconstruction (right): DIEP flap Chemotherapy 3/23/2018 CMF Dx 9/2018, IDC, Right, <1cm, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy: Right Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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May 28, 2019 08:39PM Rosie24 wrote:

I brought up the vaginal dryness issue today with my MO, told her that it felt like sandpaper last time we tried having sex. She grimaced and said, we don’t want that. She suggested I try Intrarosa and warned me that it was expensive and that insurance may not help. I’m up for trying it but am a little concerned about the possible estrogen effect. I got the feeling she doesn’t hear this complaint much. Maybe others save it for their gynecologist? (Last time I mentioned dryness to my gynecologist I was just into menopause and I had no idea what was coming down the road with MBC and Letrozole. I did have good scans though, so I appreciate the Letrozole for that.)



Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- (FISH) Hormonal Therapy 1/24/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/3/2019 Lumpectomy: Left Surgery 12/3/2019 Lymph node removal: Sentinel Radiation Therapy Whole-breast
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May 28, 2019 08:58PM HikingLady wrote:

I am ER+ and am on Anastrozole. I see on this thread and elsewhere on this forum that some MO's say NO to Estradiol cream for ER+ patients.

My OBGYN prescribes Estradiol cream. My MO continues to approve, and says it's fine for me to still use it.

Small tube, 1/2 gram 3x/week. Works well for me. Out of my measured dose, I save out a small bit to put around vulva, rectum, urethra to keep those tissues also elastic, and the rest goes in my vagina.

It's expensive---I think I pay $150 for a tube, but that's the DISCOUNTED price with my insurance--the real price is more like $350. One tube lasts 3 months.

I just chatted today again with my MO about whether it's still safe for me. He says YES. The studies he trusts don't show systemic absorption that would interfere with my estrogen levels. He says that even a higher dosage than what I'm taking has been shown to be safe, so he thinks it's completely fine for me to continue.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 29, 2019 08:44PM karen1956 wrote:

My medical oncologist is okay with me using estrogen cream - in the past I used estradoil (sp) - tried the ring and got a massive yeast infection but not with the cream. Gyn gave my an Rx for Premarin and it is helping. She also gave me samples of Imvexxy with is a small suppository (10mg). It is less messy than the cream. It is making a difference for my female parts as well as intercourse. My husband also found a cream in Canada called Gynatrof - its a vaginal moisturizer - to help relieve symptoms and discomfort of vaginal atrophy - it is over the counter (no Rx needed) - main ingredients are hyaluronic acid and vitamin E. Manufacturer is Tyros Biopharma.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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May 29, 2019 10:32PM Pamela23 wrote:

I'd been on Estrace but was given Premarin last week. Both are .01%. Hiking Lady, does the brand matter--could you get a different one for a cheaper price? My insurance covers mine.

9/15/2016, IDC, Left, 3mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/6/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/20/2017
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May 29, 2019 11:22PM HikingLady wrote:

Hi - regarding which brand of estrace cream... My insurance does pay a lot of the cost, but I have a high co-pay. My OBGYN linked me up with a mail order compound pharmacy that has a version that's generic. The idea was for me to try it, and if it worked, it was a lot cheaper - maybe $30/tube instead of about $300! I found it to be watery, wouldn't stay on my skin---just slid right off because it was so thin-bodied, and also adversely reactive with my skin--made my tissue sting.

This is the kind I use and it is name brand, I think, and super expensive, for sure:

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 2, 2019 09:53PM Pamela23 wrote:

Hiking lady--I just paid $20 for my Premarin, I must have good insurance?

9/15/2016, IDC, Left, 3mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/6/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/20/2017
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Jun 3, 2019 01:47AM HikingLady wrote:

Yes, I know Estradiol is way more expensive than Premarin....I've been meaning to ask my MO and my OBGYN to compare and contrast so I understand the differences between those two medications. Possibly local vs. systemic? I will ask my docs to tell me more...

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 3, 2019 09:19AM moth wrote:

hikinglady - one difference between the 2 medications is that estradiol is synthetic whereas premarin comes literally from the urine of pregnant horses which are kept in cages, perpetually pregnant, and hooked up to urine collection bags. I don't even want to think about what happens to their babies.

However, medication prices have almost nothing to do with how much it costs to produce or the price of ingredients - they're pretty much based on what the market will bear. There was a recent push at the World Health Assembly to increase transparency in drug pricing worldwide but the final resolution was watered down. "" Prices charged by pharmaceutical corporations vary wildly for the same medicine depending on who's buying, and the exact prices that are paid are typically shrouded in secrecy." Doctors Without Borders article on secret medicine prices: https://msfaccess.org/secret-medicine-prices-cost-...


Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/10/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/10/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole)
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Jun 3, 2019 09:52AM Pipandor wrote:

I joined this discussion a while back and I thought it might be helpful to share what I have learned since. Turns out the tight ring of pain I feel is caused by scars left by a laparoscopic hysterectomy performed years ago. Many women have vaginal scarring from childbirth or surgery that may not cause pain until after menopause. Unfortunately, estradiol did not alleviate that pain for me, but it really helped with incontinence so I plan to stay on the maintenance dose.

Replens, preferably a couple of hours before intercourse, and intercourse at least once a week remain the best way for me to manage. I tried Gynatrof but I didn't find it as effective as Replens. The single-dose tubes of Replens are not very eco-friendly, but they are paraben-free.

Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/5/2016 Lumpectomy: Left Chemotherapy 3/11/2016 Taxol (paclitaxel) Targeted Therapy 3/11/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Jun 3, 2019 09:54AM HikingLady wrote:

I found my notes from discussing this with my MO...he said no to Premarin for me, because he thinks that it affects more of the systemic level of estrogen and yes to Estradiol because it's not shown to be as absorbed systemically and stays more local and temporary in only vaginal tissue. I had my first breast cancer, also ER+ in 2003 (!!!! YES, just my bad luck; my 2018 breast cancer was not a recurrence from the first one, but a completely new cancer with totally different pathology.. #1 was absolutely cured, so says my MO) so my discussion about all this with both my OBGYN and also my MO has been going on for 16 years now, alas....

moth yes very true about med pricing---I think there are now synthetic versions of Premarin? We have horrific examples in the USA of overpriced 'brand name' meds, for sure.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 5, 2019 08:42AM edwards750 wrote:

My mother was taking Premarin when she was DX with BC. Needless to say her doctor told her to cease and desist taking it. There is a link between the drug and BC.

Diane

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Jun 5, 2019 09:40AM karen1956 wrote:

Edwards750 - many of us taking Premarin or estradiol are Breast cancer survivors and taking the drug with the blessings of our oncologist. There is no one size fits all

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Jun 5, 2019 01:22PM runor wrote:

Hikinglady...your oncologist better know more than 'thinks' it will affect you systemically.

I am skeptical on how much our oncs know or care to know about destroyed lady parts. They're not gynecologists. Some of them are not even women. Some of them have never walked around for even one day with a non functioning vagina! Just because they have the white coat and stethoscope DOES NOT MEAN they got a dose of empathy at the door. No. They are oncologists. They spray chemicals on things. So your hoohoo got a little overdrift from the Round-Up and now it's withering into a pile of dust, oh well, shit happens.

I think if someone is expecting to use Premarin every single day and they have a hormone positive breast cancer, yes, there will be pushback. But I maintain (as this is my experience and the only experience I can offer) is that ONCE EVERY SIX MONTHS I shoot up a dose (tiny, .05 gram!) and it has helped tremendously! It even took care of the pee dribble. It helped me sleep - because I was awake, rolling around in bed in uncomfortable misery feeling like there was a dry golf ball shoved up my kooch that was trying to come out, scratching and dragging as it did.

If you are willing to try ONE application of Premarin and then let things settle for a week to 10 days and then re-evaluate how effective it has been, why in the name of god would you let your oncologist, who did NOT wear your vagina to work that day, tut-tut you? I think enough has been taken from us with breast cancer. If I can use a reasonable amount of vaginal hormone cream, every now and then, to make life and vagina more tolerable, then why the hell wouldn't I? And why would I give my onc the power to say yes or no to that? Sorry Buster, this is a Private Panty Party and you are not the owner, so give over the goods and shut the hell up. Once every 6 months? Come on!

Moth, I know this issue of PMU horses has come up before. PMU mares are often drafts. In many cases their babies go to slaughter. But you must also know that untold numbers of private horses also go to slaughter because the world is staggeringly full of idiot people who happily starve and neglect their horses. For a lot of horses a bullet to the head is a far kinder end than slow, painful withering death from starvation or a parasite load that sucks the life out of them. PMU mares are well fed, well vetted, kept away from biting pests and inclement weather. Yes, their movement is confined and they wear urine catchment cups. Also, many of their babies are in great demand as sport horses, the poor man's warmblood. Belgian, Clyde, Percheron X TB make some mighty nice mounts for stadium jumping or eventing. The issue of PMU mares in not black and white. It's shades of gray. And I say a thank you to some unknown mare that her sacrifice has brought me relief from some real misery.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/4/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 5, 2019 05:29PM HikingLady wrote:

What a difficult thing we're all going through. The Collateral Damage from cancer treatment leaves us with so many challenges.

I've been dealing with vaginal atrophy since I was 45 (I'm 61 now) because of being on Tamoxifen back then after Breast Cancer #1. All along, my MO and my OBGYN have both been extremely responsive and compassionate and proactive about supporting my comfort in all ways. In All Ways includes making sure I have a functioning vagina.

My MO has absolutely done super-investigating and reading of all new trials and research to give me a plan going forward that supports my overall QOL and is also safe, given my diagnosis.

Estradiol cream (1/2 g 3x/week is my Rx) works just great for me, and is approved for me by all my docs, so I'm grateful for this solution, and grateful for their compassionate, good care.


Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 5, 2019 06:07PM karen1956 wrote:

Premarin, estradoil and the new cream, Imvexxy, at least from my Rx is use every day for 2 weeks, then just twice/week. It has made a significant difference.

Runor, not all male oncologist are cold and uncaring about lady parts - my oncologist was the one who originally gave me the Rx for estrace cream. My pcp, oncologist and gynocologist all feel it is appropriate for me to use. But I know not all doctors have great "bedside" manner.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Jun 6, 2019 01:14AM runor wrote:

Karen. I agree. Not all oncs are uncaring. And it's not even so much uncaring as just not alert to or concerned with that part of our lives.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/4/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 6, 2019 01:04PM jaycee49 wrote:

HikingLady and Karen, I'm really glad you have nice caring MO's. You are very lucky. I don't. I get "no comment" on most side effects of treatment. I think it is the RESPONSIBILITY of any doctor who prescribes any med to take their patients side effects seriously and help them deal with them. Every education session I have been to for a new treatment taught me that if I have any side effects, I should report them and my MO will help me. That has NEVER happened. My former MO actually said to me, "have you ever tried yoga?" That was the entire extent of his help. I was falling down sick with chemo and that is what he said. (Thus former MO) My current also has no suggestions but she is nicer.

I went to a new PCP yesterday (I go to a place that uses residents so there is a lot of change) and she said to use Vasoline in and around my vagina for dryness. My vaginal dryness is being exacerbated by yeast treatments right now. I checked online when I got home and all sites said DO NOT use Vasoline on that area. Why? It causes YEAST.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/4/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/4/2014 Herceptin (trastuzumab) Chemotherapy 8/4/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/14/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/31/2016 Femara (letrozole) Targeted Therapy 3/31/2016 Ibrance (palbociclib)

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