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Help with Abbreviations

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 11:45AM - edited Feb 9, 2016 11:04AM 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 137 of 140 (4,185 results)

Posts 4081 - 4110 (4,185 total)

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Apr 5, 2019 10:08AM runor wrote:

Jaycee, daily wearing plastic backed pantiliners or sanitary pads that are paper or plastic topped can cause ongoing irritation to the lady parts. I know it goes against the North American grain but FABRIC (cotton!) pantiliners and sanitary pads, which you wash and re-use, will go a long way to calming down lady parts that don't like the mucky, humid environment caused by commercial products. For the last few years of my period I used cotton pads and yes, I hand washed them and yes I got over it and no it didn't kill me and no it wasn't gross. Wish I had started using cotton washable pads WAY sooner than I did. Just a thought.

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 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 5, 2019 11:15AM jaycee49 wrote:

runor, thank you. I have been going without for a few days now and the difference is quite noticeable. What was I thinking? I need to get some gentle wipes and cotton pads for when needed, like UTI incontinence and yeast messiness. Regular stores like Walmart and Walgreen's sell cotton pads, organic even. I already have a few items in my Amazon shopping cart. Well, there are always a few items in there.

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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Apr 5, 2019 12:19PM DebAL wrote:

hi everyone. Have any of you pr neg ladies tried bioidentical progest cream? Or also... I believe it was called.. intrarosa inserts?

Dx 1/22/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- (IHC) Surgery 2/11/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 2/12/2018 Mastectomy: Left, Right Chemotherapy 4/1/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 6/13/2018 Arimidex (anastrozole) Surgery 8/8/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/19/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery
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Apr 5, 2019 01:49PM ABeautifulSunset wrote:

I use Intrarosa. It worked better than any other thing I've used so far...and I've tried a lot, including Mona Lisa. It does need to be supplemented with lube or coconut oil (lube of choice for me) during intercourse. I'm not using it right now because I'm currently on chemo and I really just don't feel like it. But I'll use it again!

ABSunset

“Sunsets are proof that endings can be beautiful too.” Chemotherapy Gemzar (gemcitabine) Chemotherapy Xeloda (capecitabine) Targeted Therapy Afinitor (everolimus) Targeted Therapy Afinitor (everolimus) Chemotherapy Doxil (doxorubicin) Targeted Therapy Chemotherapy Chemotherapy Chemotherapy Xeloda (capecitabine) Targeted Therapy Radiation Therapy External: Breast, Chest wall, Bone Chemotherapy TAC Targeted Therapy Ibrance (palbociclib) Surgery Mastectomy; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole)
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Apr 5, 2019 02:05PM - edited Apr 5, 2019 02:06PM by jaycee49

From the Intrarose.com website:

"Before using INTRAROSA vaginal inserts, tell your healthcare provider about all of your medical conditions, including if you:

  • Have, have had, or think you may have had breast cancer. Prasterone, an ingredient in INTRAROSA vaginal inserts, is changed in your body to estrogen. Estrogen medicines are not for use in women who have, have had, or think they may have had breast cancer."

The main ingredient is DHEA. The above statement is, of course, false. Estrogen can be used in people who are ER-. ER+ people use it, too, with good results. There is NO RESEARCH showing whether is causes anything, or doesn't. None. You are on your own. Your MO may say yes or no to estrogen. That's them guessing. There is just this disconnect, at least for me, to taking estrogen suppression (Tamoxifen or AI's) and estrogen supplementation at the same time. Doctors' problem, too, I guess. I get it. It's a question of where topical vaginal estrogen ends up. Again, no research. Maybe there is no way to determine that. Just thinking out loud here.

Sorry. Long answer to DebAL and, no, I haven't tried it.

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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Apr 5, 2019 04:55PM ABeautifulSunset wrote:

True Jaycee, my ONC says it's safe...but really who knows. Right now there is no proof that it is UNSAFE.so... I'll take the QOL... Ive lostbenough and ..... i really wanna get my sex on, ya know.

Lol.

ABSunset

“Sunsets are proof that endings can be beautiful too.” Chemotherapy Gemzar (gemcitabine) Chemotherapy Xeloda (capecitabine) Targeted Therapy Afinitor (everolimus) Targeted Therapy Afinitor (everolimus) Chemotherapy Doxil (doxorubicin) Targeted Therapy Chemotherapy Chemotherapy Chemotherapy Xeloda (capecitabine) Targeted Therapy Radiation Therapy External: Breast, Chest wall, Bone Chemotherapy TAC Targeted Therapy Ibrance (palbociclib) Surgery Mastectomy; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole)
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Apr 15, 2019 12:13PM ML1209 wrote:

Pipandor and Moodyblues --- my Breast Surgeon Oncologist, my Medical Oncologist, and my Gynecologist all three agreed that I could use Premarin. I use 1 GM twice a week. They believe that very little gets into the rest of your system. The main thing is to use it twice a week to keep the vaginal tissues estrogenized - less will go into your system, it will remain where it is supposed to. I am a nurse, so I tried everything else and researched lots before going this route. This is the ONLY thing that relieved my symptoms - making sexual intercourse possible. It does not bring back your libido - but you can have intercourse without pain. At least this has helped me. This is part of the breast cancer journey that nobody realizes - so much of life changed forever with this diagnosis. Hope everyone find what helps them. Now, I would love suggestions to help with the libido Smile.

Diagnosed age 48, Oncotype 35 Dx 11/2016, IDC, Right, 2cm, Grade 3, 0/4 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2016 Surgery 5/23/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 7/9/2017 Whole-breast: Breast Hormonal Therapy Arimidex (anastrozole) Chemotherapy AC + T (Taxol)
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Apr 15, 2019 11:46PM runor wrote:

ML1209, I also have used Premarin, but without my doc's blessing. I have been extremely lucky in that I literally use it once every 6 months or so and it keeps things tolerable. I think it helped clear up the chronic pee dribble I had going on and helped with not getting a bladder infection every single time we had sex. No, it does not help with the libido. I don't know what would? Jason Momoa? I think too many women are scared off intermittent vaginal estrogen use because it appears to be a risk for estrogen positive breast cancer patients. But is it? As we have seen through multiple posts here, the jury is out. Some doctors rip the vaginal cream out of their patient's hands and toss it out the window. Other doctors say go ahead, proceed with caution.

I have not tried any other products to relieve vaginal symptoms, but considering that semi-annual applications of Premarin seem to be working, I feel very lucky!

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 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 18, 2019 11:41AM 2002chickadee wrote:

I have to vent about my GYN here on these topics. I went in to see him yesterday about a weird symptom I've been having, and while I was there I also mentioned to him that intercourse has been very painful. He was like -- oh yeah, just use a lot of lubricant, it's from dryness. When I responded to him that I use plenty of lubricant, he said -- oh, well for women in menopause, we usually give them estrogen cream but you can't have that, so [shrug]. And then our visit was over. I was so close to crying when he left the room, I mean, I'm 42 years old and he's like, oh well, no good sex for you FOREVER. But, thankfully, I remembered all the good suggestions on these threads, and reminded myself there are other options, and walked out of there knowing it was the last time I would ever see that doctor again. Sort of a bummer because he was great through 1.5 pregnancies but obviously not the guy for me in this next phase of life. GRRRR.

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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Apr 18, 2019 11:55AM jaycee49 wrote:

Yeah, definitely Chick, find another doctor although that is a very common reaction from gyn's and MO's. Your DH needs to be with the program, too. Not so demanding of "regular" (that's what mine called it) sex at least until you have a chance to try a few things. It's his problem, too. Guys, as usual, have it easier. If they have ED, they just CAN'T. We just let them cram it in and suffer (not that I do that). Boy, I am in a mood.

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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Apr 18, 2019 12:06PM 2002chickadee wrote:

Haha, I hear you on being in a mood! My DH has actually been super supportive with the whole thing, not pushing for anything. I miss it! I just think it's ridiculous that doctors respond so insensitively. I also suspect that if men had a problem where they felt like their penis was ripping off when they had sex their doctors would not dismiss them. Obviously, Western medicine has saved my life and I am grateful for that, but in this phase I am realizing how poor it is at helping us be well and whole in all aspects.

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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Apr 19, 2019 07:43AM TWills wrote:

I hope this link works, it’s a treatment for Hypoactive sexual desire disorder, I ran across this info a while back and plan to talk to my GYN about it. My MO luckily seems to understand the disfunction the treatments have caused and wrote me an RX for low dose estradiol inserts. We also talked about the lack of libido but she incouraged me to talk to my gyn about that because she said they would know more, makes since. She said she would be glad to communicate with my gyn to make sure everyone was on the same page as to what is safe. She mentioned Testosterone for libido but stopped short of saying if it is ok or not, that’s when she said to talk to my GYN. As far as the link I attached, I don’t know anything other than what I’ve read about it but it could be a good option.

https://www.drugs.com/history/vyleesi.html

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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Apr 20, 2019 12:04AM runor wrote:

2002chick, it may get to the point where you have to make the decision to ignore your doc's advice and insist on something. Yes, modern medicine can keep us alive, but at what price? It's like making a deal with the devil sometimes. But my point is that doctors often act on the side of caution and since the popular wisdom is no estrogen creams for estrogen positive breast cancers .... they don't do any research or any creative problem solving on your behalf.

I keep repeating myself here about my intermittent use of Premarin, but by god I think it has saved me from a lot of the effects normally associated with tamoxifen. I think it would be insanely dangerous of me to use it every day, so I don't. It would maybe be better to use it once a week. But I don't. I use it every few months. Once every few months, like 6 months, and it has helped ease the symptoms I've had. Is it perfect? No. Sex still doesn't feel like it used to. But at least it's tolerable and I don't end up bleeding. If you were to try one application every 2 months and see if it helped anything, that might be a risk worth taking. More often than that might not be a risk worth taking. You have to weigh your comfort with risk against your desire to have comfortable sex and make a decision.

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 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 20, 2019 09:43AM jaycee49 wrote:

runor, unless you really enjoy sex yourself and that's why you prepare your vagina for it to be comfortable, you are giving me a serious case of cognitive dissonance. This is the same guy who wants you to have a large group of HIS family over for a sit down meal on Easter and doesn't understand why you still "act like" you have cancer when, obviously, you don't. I'm confused (not an uncommon state). Seems like you have some leverage here.

For people who can't or don't want to get a script for estrogen, DHEA is easily obtained online. Same difference. Twills, my former gyn (the good one) prescribed testosterone cream for me when we were trying to avoid UTI's and yeast. I never used it. Don't know why. Just seemed weird. She knew about my cancer and MO didn't object either. Must be OK?

I'm pretty sure from my own experience that the act of having painful sex or semi-painful sex makes things worse. And waiting to do something makes things worse. I am at the point that having "regular" sex will never be possible for me again. I've watched this happen slowly over many years. I had atrophic vaginitis long before cancer. Add chemo, hormonals, and inactivity and no more sex for me. I hear you all pondering your next move and waiting. Bad idea. You need to get moving or you will end up where I am and I'd hate for that to happen.

I'm in a war with my vagina every day. Right now I have yeast brought on by an antibiotic gel used for a vaginal bacterial infection that took three weeks to diagnose and treat due to idiots at my gyn's office including the doctor. When they answer the phone (after 20 rings), they put you on hold before you can utter a peep. You explain your issue. The front office person leaves a message for the doctor's nurse. The nurse leaves a message for the doctor. The doctor leaves a message for the nurse. She calls you back after all this which may be 1-2 days later. Meanwhile, your infection gets worse and harder to treat. I had to figure out that I had yeast because they could not. Now, I will not be able to get rid of the yeast unless I stop eating sugar and carbs for months. Last time, it took eight months. I didn't mean to include all of this but it looks like I did.

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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Apr 20, 2019 12:56PM chicopeach57 wrote:

As I have mentioned before my MO prescribed Estrace estrogen cream for me years ago, use half a gram every 4 days. It stopped that ring of pain in the vagina that made sex tough. I use coconut oil after a shower and Wet by Platinum for a lubricant. Also have used the steroid Clobetasol to help clear up other vaginal issues, only use it maybe once a month now. I have to work to get the libido going. I am now over five years out, I do not want to take the Femara anymore, I want a better quality of life. Femara for the next five years only reduced my chances of recurrence by 4%. MO did not try to talk me out of quitting it. I know my body will not go back to pre-bc state but I want some of it back! Will let you know how it goes

A strong person is not the one that does't cry. A strong person is one who is quiet and sheds tears for a moment and then picks up her sword and fights again. Ash Sweeney Dx 11/13/2013, IDC, Right, 1cm, Stage IIIA, Grade 3, 4/11 nodes, ER+/PR+, HER2- Surgery 11/21/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 12/12/2013 AC Chemotherapy 2/27/2014 Taxol (paclitaxel) Radiation Therapy 5/18/2014 Breast Hormonal Therapy 5/22/2014 Femara (letrozole) Surgery 12/8/2014 Reconstruction (right)
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Apr 20, 2019 10:19PM - edited Apr 21, 2019 04:31PM by runor

Your mental dissonance is correct. I can give advice on Premarin helping my vagina. But it has not helped my desire. Nor has the fact that there are a lot of things wrong and always have been. Hub and I do not have an easy relationship. Never have. It has been a struggle since day one. There are great stretches of time with no sex. I am not in a flap over this.

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 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 21, 2019 09:57PM ML1209 wrote:

For what it's worth, my GYN's sister and mother both had breast cancer. He truly stays on top of this and listens to my concerns, etc. He said he is very comfortable with them using the Premarin. That makes me feel better about using it.

This is some hard stuff. Hard to know we will never be who we once were. Hugs all around.

Diagnosed age 48, Oncotype 35 Dx 11/2016, IDC, Right, 2cm, Grade 3, 0/4 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2016 Surgery 5/23/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 7/9/2017 Whole-breast: Breast Hormonal Therapy Arimidex (anastrozole) Chemotherapy AC + T (Taxol)
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Apr 22, 2019 11:17AM jaycee49 wrote:

Hey! runor, what happened to the first paragraph of your post about me and my vagina battling at a beautiful chessboard? I liked that paragraph and now it is GONE. Did you think you could OFFEND me??? It is not possible to offend me I am offend-proof.

I'm glad that people and even their doctors find it ok to use estrogen. My MO is against it but I'm sure I could get someone to rx it or buy DHEA online. I mean, what am I worried about? I'm already stage IV. What else could happen? More spreading to more places, right? That's the worry. Seems suspect. (They don't tell you when you start Tamoxifen or an AI that you will never have a normal sex life again. Wonder why.)

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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Apr 22, 2019 05:07PM - edited Apr 22, 2019 05:10PM by runor

Jaycee, I was afraid of offending you! Or your vagina. One must be careful who they offend these days. Don't want a pissed off posse of pussies showing up here on motorcycles to beat me up. Shocked

As for continuing vaginal misery, if you have not tried the Premarin, I say try it. As you say, at this point, what do you have to lose? Decide you'll try it once a week for three weeks and see if there is a difference. Like I keep saying, I used it about once every 6 months, and the improvements are immediate AND longer to show up. But I think you have suffered enough. Tell your Onc to get over him/herself and give you the goods.

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 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 4, 2019 02:51AM TriplePositiveP wrote:

@Jaycee, how long is too long? It's been almost 3 years. I just went through a ct scan and a cystoscopy for rare occult bleeding, continuous trace blood in urine and everything is normal, except for vaginal atrophy, which I knew from pain even inserting the cystoscope. (i had a hysterectomy at end of treatment, so no issues there). My MO prescribed vagifem, even though I am triple positive (either in high 80s or 90s percentile, I forget now).

If it's too late, I guess it's not worth the risk. I have read conflicting info on results of mona lisa touch (there is another in our area called diva or something like that) but my husband is not on board with that because of the expense and some reports of damage.

Sex is just too painful to induce anything other than dread and replens, astro-glide etc don't change that. There has never been discussion of quality of life issues by any of my doctors except the urologist. the not-so-subtle message I feel is that I should be glad to be alive. I feel guilty for being upset by all the side-effects from anastrozole, even though my mobility is now much worse than my 91 year old mother's.

Anyone else here highly ER+ with an MO who says vagifem is not systemic? A 2013 study I read said the results are inconclusive and I haven't found anything more recent. Was thinking about getting a 2ndoncology opinion, but if it's too late for vagifem to help, there's no point.

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May 4, 2019 09:26AM - edited May 4, 2019 09:29AM by anotherNYCGirl

TriplePos, - I used vagifem with the ok of both my gyno and my onc, even though I was then triple pos. The prescribed dose was higher then than it is now, and I still did not find it to be of much (if any) help, even after years or use, so I stopped. I am reluctant to try Mona Lisa because of the possible added discomfort (as well as the expense). My current drs have suggested coconut oil and Hyalo Gyn, which has, indeed, helped. At the suggestion of my gyno, I recently switched the HyaloGyn for Revaree (both ordered online) because it is easier to use, less messy, and more soothing. Perhaps your gyno has samples for you to try? That was how I tried it.

Good luck!

PS I use coconut oil 'suppositories' (home made) on the days that I dont use the Revaree. (Inserted before going to sleep at night, so it doesn't drip right out!)

Dx 1998, DCIS, Stage 0 Surgery 3/17/1998 Lumpectomy: Left Dx 6/2000, ILC, Stage IA, 0/3 nodes, ER+/PR+, HER2- Surgery 7/10/2000 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/31/2000 CMF Hormonal Therapy 2/11/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/11/2001 Breast Hormonal Therapy 2/11/2006 Femara (letrozole) Dx 2/2014, ILC, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 3/24/2014 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 5/1/2014 AC + T (Taxol) Surgery 11/19/2014 Reconstruction (left); Reconstruction (right) Surgery 1/13/2015 Reconstruction (right): Tissue expander placement Surgery 5/27/2015 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 2/21/2016 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
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May 4, 2019 10:25AM jaycee49 wrote:

TriplePositiveP, it took years and years for me to give up. I had vaginal atrophy in my 50's that Vagifem cured. It got expensive so I cut back and atrophy returned. On and off OK for more years. Then cancer. Chemo and estrogen suppression. I'm 70 now. 20 years of struggling with this. There were good periods. Some of it also has to do with my shaky marriage. I wouldn't give up after three years. You have to be consistent and relentless with the moisturizers. I did it every night for FOUR MONTHS. I wanted to just skip a night, just once. Nope. Shove something up your vagina every night. Replens and Astro-glide won't do it. Replens has glycerin that causes yeast. Astro-glide is a lubricant, not a moisturizer. They are different. Get serious about it. Using something now and then won't help. You need a plan and to carry it through. Doctors won't help. DH won't help. I still get up every morning and think about how my nether regions feel and go to bed every night thinking about what I am going to use.

AnotherNYCGirl, Revaree is really expensive. Hyalogyn is cheaper and coconut oil suppositories cheaper still. I can't use coconut oil all the time or I get yeast. I need the acid in Premeno Duo (much harder to get now) or Hyalogyn. I bought something new yesterday called Cicatridina.

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 6, 2019 09:27AM TriplePositiveP wrote:

Thank you @AnotherNYCGirl & @Jaycee49 for this helpful info. I am going to set up an appt with the gyn I haven’t seen since my hysterectomy in 2016. Female and very nice, so hopefully a better conversation than with the onc gyn who did the hysterectomy and said there was no physical reason why sex should be painful..

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May 6, 2019 09:57AM jaycee49 wrote:

Good idea, TripleP. Your treatments aren't listed so are you taking Tamoxifen or an AI? It's weird to take one of those and also use estrogen but some doctors do it. If not, why not estrogen? It solves everything.

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 6, 2019 08:46PM Gussy wrote:

Has anyone tried testosterone and anastrozole pellet insertion?

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May 7, 2019 01:19AM ShetlandPony wrote:

Regarding the question of how long is too long — my gynecologist (who had bc herself) prescribed Intrarosa, and said that I should get some graduated-size devices (sorry, can’t remember what they are called) and work my way up before attempting intercourse. She said if I did not do this conditioning along with the Intrarosa, I would be unhappy with my attempt to resume. So I need to place an order.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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May 7, 2019 05:56AM TWills wrote:

Gussy, I’m interested in this as well.

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 12, 2019 09:50AM Pamela23 wrote:

HI ladies--I'm new to the board but definitely not new to sexual dysfunction! I had chemo over 2.5 years ago and once treatments were over I visited my GYN to get a baseline of my uterine lining (my idea, not my MO's) before starting tamoxifen. At that time I was dry as a desert. During the exam she asked how my sex life was, and I answered-"what sex life". She said she could see how thin my lining was and told me I should try Estrace. She gave me this article about the American College of Obstetrians and Gynecologists approving vaginal estrogen use BC patients to show my MO and if my MO approved it, she'd prescribe it.

https://www.acog.org/Clinical-Guidance-and-Publica...

This definitely helped cut the pain to a 1-2 on a scale of 10. But I wasn't consistent. I use it every 4 days. My doctor said to use a pea sized amount twice/week which I did but threw in the towel. Then I thought I'd give it a try again and the instructions had said there was a 2 week period of "prepping" by inserting it daily for 2 weeks then maintaining twice a week. This was the answer. I no longer have pain BUT I don't have pleasure. The dose is .01% estrogen. It's been over a year and a half and no change. I talked to my friend last night who is a GYN and he said it's one of the weakest options out there. I'm going to go back to my GYN and ask her what my other options are.

I also want to mention that I didn't use tamoxifen for the first 9 months. My doctors were aware of my decision and were ok for the first 6 months (but I stretched it to 9). My point is, I wanted my body to heal and I wanted to see if I'd get my period back. I didn't. BUT I got my own lubrication back in that time period and I can still feel when I should be ovulating. I know I don't have enough progesterone to actually bleed but I feel my body is working with me for once. But the libido and the nerves aren't there. Is that a menopause thing or a chemo thing?

I have to throw in there that my clitoris has been numb since chemo and I haven't been able to taste since Nov 2016--an enigma for my doctors since I only did 4 rounds of TC. Needless to say, my pleasure tank is on empty so if I can improve my sex life, it would be life changing.


9/15/2016, IDC, Left, 5mm, 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 15, 2019 10:04AM - edited May 15, 2019 02:13PM by TWills

RE- Female Libido

I'm sorry this is long and most likely rambeling but I am excited about the possibility of this especially since it seems safe to use with BC, but judge for yourself.

I'll start this by saying I am in no means promoting or recommending this product, I just want to share and let you research it if you'd like. I mentioned it once before a few weeks ago but had only just heard of it from a PHD Nurse Practitioner at a Health and Anti Aging Center that happens to be next to to salon that I work at. She told me she tested it on herself and said “it works, it really works" she also said in addition to giving you the feeling of wanting to have sex “it ups the sensitivity down there" I'll take both of those please! I'm not a huge fan of coping and pasting info because I don't want to cherry pick any info, I'd rather anyone that is interested to look up any and everything they can find, but I might try and include the initial info that made me look into it more. I also found a study that tested it on women who lost their libido because of cancer treatments and I couldn't find anywhere that it effected hormones, but do that research yourself. I'm a hairstylist not a Dr or Scientist.

It's a Peptide called PT-141 aka Bremelanotide, the FDA was supposed to make an approval decision in March but I read this morning that it has been pushed to June. I was able to get a RX for it two weeks ago so that hopefully means it was or maybe RX can be written by an MD even during the trial phase. It sounds very promising to help female libido, after a good bit of research myself I feel like the huge male ED companies are/were making it difficult to get this new drug approved. It also works for men but studies show it tends to work better in females. As with a lot of drugs it was discovered by accident while testing for something totally different.

I have to say that it is expensive, very expensive, $350(but there are possibly other options). It comes in injection form which you have to do yourself, yuck!! But you use a tiny needle and it barely goes under the skin in your belly fat, subcutaneous is what it's called. A $350 vile has approx 20 injections, its injected on an “as needed" basis, not quite spontaneous but whatever, I'm desperate! Supposedly it takes a few hours to feel the effects, but they can last as long as 72 hours, OUCH!! I'll settle for an amazing 4 mins please and thank you

I decided to take my chances and order it off of the internet, I KNOW, risky! I looked at 100 sites on and off for weeks until I just picked one and ordered it. I paid about $40 for the peptide(powder), the liquid solution you have to mix into it and 10 needles. There is a YouTube video that shows how to mix and store it. It actually came from a company in Tampa, just down the road from me, received it in just one day. Wouldn't feel comfortable telling you the site I purchased from until I use it myself. Any online place that sells it must for legal reasons say “ Not for human consumption" since it's still considered in the experimental stages just to cover themselves. That was scary for me. It came in yesterday and I'm sure I'll try it but I'll need to work up the courage. I'll let you know if it's the answer to low/non exsistant libido or not when or if I use it. 🤞🏻🤞🏻🤞🏻

This is the initial info that was sent to me...

No sex drive? Would you rather be doing laundry?

It is estimated that 43% of women suffer from female sexual dysfunction. It is also estimated that 30 million men suffer from ED (erectile dysfunction), with incidence increasing 2-3 fold between the ages of 40-70. Low sexual desire tends to lead to relationship distress and anxiety.

The most common method of treating male sexual dysfunction include medications such as Viagra, Cialis, and Levitra.

Unfortunately, for women, the options are more limited.

However, a peptide therapy called Bremelanotide has been reported to aid in sexual experiences for both men and women.

Research Links:

Female

Male

Unlike Viagra and other similar medications, it does not act in the vascular system, but directly increases sexual desire with the nervous system. It stimulates and activates the dopamine hormones that happen to play a major role in sexual motivation. Dopamine is a known compound in the body, it's a neurotransmitter that stimulates performance. When you have low levels of dopamine, your libido is lowered.

Recently, the FDA accepted the new drug application filing for Bremelanotide. This medication is now available at LivingYoung Center by prescription.

All the best,

Dr. Carissa Alinat
Nurse Practitioner




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 16, 2019 10:22PM runor wrote:

Twills, I was on the edge of my seat reading this! I am both excited for you and nervous as hell! I will be following to read everything you report. Good luck and keep us posted!

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 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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