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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 09:45AM - edited Feb 9, 2016 09:04AM 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.


****************************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:

Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Dec 4, 2004 07:57PM Mena wrote:

Hi Girls -- For all our sakes, please go to page 5 and click on the link that Glad provided.

My ob/gyn told me about this last month; my onc said no way to any type of testosterone. But some of you may be prime candidates.

Remember, the FDA has not decided whether or not to approve use of this patch. There is still hope. Letters from each of us to the FDA urging approval and/or further research could make a difference. At least they will hear a collective voice with a common disease and it's residual problems.
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Dec 5, 2004 07:20AM blueiris wrote:

Hey ladies I read in friday's San Antonio paper that Urology San Antonio is opening the Institute of Female Sexual Medicine in March 2005. It goes on to say that "the driving force behind the clinic is a medical and mental health team of professionals dedicated to a mind and body approach to female sexual functioning." and "Thanks to the opening of the first Female Sexual Medicine Clinic several yearsa ago by the Berman sisters, research in this area has accelerated the understanding that women's sexuality is decidedly complex." I know most of you don't live close to SA but I was wondering if anyone has checked to see what the Berman sisters say and where there are more of these clinics. Just a suggestion.
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Dec 5, 2004 08:02AM SpanArtist wrote:

Hi everybody,
Re: previous post by blueiris, I'm re-posting some info from this thread that I originally posted on 11/9/04 that might be of interest here. It is as follows:

OK, this is the web site for the clitoral pump. By the way, this item is NOT a sex toy but considered therapy (even though it's strictly mechanical) and available ONLY by prescription from an MD. I called their customer care phone line and was told that anicdotal evidence by breast cancer survivors is that this IS helpful. The rep I spoke to said that use of this thing induces a state of arousal and that in doing so, it increases hormone levels, which alarmed me (my cancer is ER, PR positive), but she added a disclaimer, saying that she's only a layperson. I mean, if arousal were dangerous for us, our docs would tell us not to get aroused, right? Here's the exciting news...she said two doctors at the Univ. of Chicago are preparing to begin a clinical trial with this device and breast cancer patients/survivors to see if it will help us sexually, so I'm going to do further investigation and will post my findings when I have them. I'm having surgery on 11/22 and will begin chemo 3 weeks after that, so I'll probably not investigate this further until that time...but the docs' names are Dr. Maryann Schroder and Dr. Arno J. Mundt at Univ. of Chicago, in case any of you want to pursue it on your own. I would think that they would DEFINITELY consider the hormone issue!! Here's the clitoral pump website:

Next, here is an excellent article by doctors Berman and Berman (researchers on female sexuality), and at the end of the article, there's contact information. I personally will be following up (in the near future) with the contact info given, but again, maybe some of you will want to do the same:

Also, I mentioned the Hitachi Magic wand, a powerful electric vibrator, which I have enjoyed with my partner. Here, it's listed on the web site BizRate, which lists several possible sources for purchasing it:,att311407--777-,cat_id--23000200.html

For the last link, you have to copy and paste the entire link (only part of it automatically underscored, for some reason). As far as the clinical trial with the clitoral pump, I have a friend who I talked to on the Y-ME phone line who lives in the Chicago area and used to work at the Univ. of Chicago in a medical capacity, and she had heard of Dr. Shroder. She told me she has contacted Dr. Shroder about the clinical trial as she is interested in participating in it herself (she's having the same Mojo dilemma as the rest of us). I asked her to inquire if someone outside of the Chicago area could participate as well (thinking of myself) and she's going to let me know. I'll keep you guys posted about this.


PS: Sierra, I'm 53 yrs old, by the way!
Dx 10/28/2004, IDC, <1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Dec 5, 2004 08:07AM pitanga wrote:

Hi all,

just wanted to let you know I posted an article I saw on Yahoo about the testosterone patch. I titled it, Jury's out on the mojo patch" I dont know if it's the same article you mention here...

Round 1-- 1999, age 39, Stage IIA. Round 2-- 2009, local recurrence and bone mets. Dx 2/5/2009, IDC, <1cm, Stage IV, Grade 2, mets, ER+/PR-, HER2-
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Dec 5, 2004 09:36AM Mena wrote:

Hey girls -- such loyalty here....I love it! Shall we designate Liza and Pitanga our resident researchers? You guys rock!

I'm already Product Performance Investigator hahahahahaah. And Connie's experience as a tour guide has really paid off here, as she guides us through this plethora of feel-goody sites.

How's this: Connie, Pleasure Dome Curator, BC. lmao...oh I'm gonna get it now...well, not "it"
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Dec 5, 2004 09:43AM Mena wrote:

Oh my, lest I forget -- Glad is Cheerleader Extraordinaire.

Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Dec 6, 2004 12:10AM pitanga wrote:

Thanks for posting the link to the Berman & Berman article --very interesting! Has anyone read the book mentioned, For Women Only?

Round 1-- 1999, age 39, Stage IIA. Round 2-- 2009, local recurrence and bone mets. Dx 2/5/2009, IDC, <1cm, Stage IV, Grade 2, mets, ER+/PR-, HER2-
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Dec 6, 2004 01:04PM tweetie wrote:

Can you take testosterone gel if you are ER+? I am tired of feeling like I am "sexually dead".
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Dec 7, 2004 02:53PM slr38 wrote:

Ok, a very general questions for those of you who are trying the battery operated equipment for the first time, from someone who is curious, but has never tried one. No details necesary, just a thumbs up or thumbs down?

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Dec 7, 2004 06:28PM Mena wrote:

Hi Slr38 - LOL...Life really is all about the timing. I finally had the mental ability to relax tonight and actually experiment fully with my new Pocket Rocket. I just told my husband I'd be right back after posting...

What? No details? Not on my watch lol!


In fact, tonight the History Channel did a story on the history (duh) of vibrators. Vibrators originated in the 60's -- the 1860's. Apparently, vibration of female genitalia was a medical treatment for an hysteria that afflicted women at the time. I find this very amusing, given my dramatic flair.

Of course, I wasn't really paying attention after a while, so if anyone saw it and knows more, please post. Of course, there's always our researchers Liza and Pitanga. But, no pressure girls. (Well, it all depends how you like it .)

So the Pocket Rocket is great to get things rolling I've found so far. I even played with it on my husband. Although he said it didn't hurt, he said it felt like he had bees in his underpants (wouldn't that hurt ?). It's a great external stimulator and I imagine the more you use it the better it gets. It'd make a cool stocking stuffer at only $11.95 at the site from which I purchased it, which shipped with absolute discretion.

Now onto that Hitachi Magic Wand. Electric........

To answer Tweeti, I am ER+ and my onc will not put me on any form of testosterone period, even though I am on an aromatase inhibitor. But I have mets.

However, AnneW, who has posted here a couple times has used it and is ER+. Given her good prognosis, her onc believes it is safe for her since she, too, is on an AI. You may want to send her a pm.

Good lovin' everyone.

Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Dec 7, 2004 10:48PM Karen66 wrote:

Tweetie, yes you can take testosterone if you are ER+. I am ER/PR+ and at my last onc. visit, my doctor said it was perfectly safe for me. I'm back on it again trying to stir things up a bit. I've only used it as a gel and not a patch. There was something in the paper the other day about the patch isn't safe for women as a female viagra, but my doc said the gel is fine for me. My oncologist is really big into research so I trust him completely. Hope this helps.
Dx 10/1/2003, DCIS, 3cm, Stage II, 1/14 nodes, ER+/PR+, HER2- Dx 1/26/2011, IDC, Stage IV, mets, ER-/PR-, HER2-
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Dec 7, 2004 11:08PM pitanga wrote:


You are too funny! The question is, can you give both thumbs up and operate your Pocket Rocket at the same time??? tee hee.

I'm happy to have been designated researcher in residence, I'm a PhD student and my department is getting huffy because they feel my CV is a little thin. So I need all the extra credentials I can get

That being said, I really MUST get off this site and back to work on my dissertation, but as for the Victorians and their treatment of hysteria, I can add quickly that the very word hysteria comes from the same root as hysterectomy, and hysterectomy was another little treatment that Victorian medicine reserved for women who they felt had no more potential as brood mares--er, mothers-- and were not easily controlled by their husbands --er, hysterical.

Not so long ago, I was told by my oncologist and several gynecological surgeons that at 42, with a non-symptomatic fibroid and as a Stage II BC/weakly er+ patient, a total hysterectomy was the ONLY sensible route. When I questioned the logic behind this, one even told me "You just have to get over this love for your uterus" adding that as soon as his wife turned 40, he had her get a total hysterectomy and she didnt have a fibroid or BC or anything! I had such a flashback to the Victorians and their insidious little treatments for women.... I was furious, but I internalized it, and instead of slapping him as he richly deserved, I simply burst into tears, thanked him (wimp that I am) and left, never to return...

Well, that's my little personal "hystery" to add to the hysteria issue... I'll try to dig up some real hard facts later.

Round 1-- 1999, age 39, Stage IIA. Round 2-- 2009, local recurrence and bone mets. Dx 2/5/2009, IDC, <1cm, Stage IV, Grade 2, mets, ER+/PR-, HER2-
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Dec 8, 2004 05:10AM sylvie wrote:

Pitanga, my reaction to the "prophylactic" hysterectomies is exactly the same as yours: this is chauvinistic and barbaric. However, when you think about how short the average life expectancy used to be for everyone, it is clear that womankind does not have a whole lot of experience with millions and millions of women growing older. Who knows, maybe opinion will evolve and in a hundred years all women will all end up going on HRT, even those with strongly ER+ breast cancer, or all will have hysterectomies at 45 to ward off problems, or all will end up doing something else bizarre that no one has even thought of yet.

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Dec 11, 2004 02:18PM Claiire wrote:

Ok, it is Saturday night! Where is the Mojo Report????

I have a new guy in my life and I am so happy to say that when we got together... everything worked the way it was supposed to work! What a relief!

I had gone out and bought stuff "just in case", but we didn't need it!

I'm doing the happy dance!

Anyone else have anything to report????

Dx 10/3/2002, LCIS, 6cm+, Stage IIIB, 0/9 nodes, ER+/PR+, HER2-
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Dec 12, 2004 04:25AM iodine wrote:

I've used a powerful massager for years as a vibrator, my husband thinks it's just for giving back massage. When I comment that it has held up really well, he remarks that it's not been used that much (LOL), but I know different!!
I made my first visit to a sex store when my daughter was in the hospital far from home (doesn't everyone!).
I looked over the penis shaped insertions types and bought one battery operated, cheaper models---- waste of time for me. Very little vibration and just nothing. Maybe the more expensive ones do a better job. I also bought 3 of the porno books, having never read one--gads, what poor writing!! I do have a couple of old paper back novels with some sexy sceans in them that do it for me. "Till We Meet Again" by Judith Krantz is one. Really old book.
I'll stick with my electric one, besides, you can leave it lying around and no one has any idea what it's for.
So for Serria, when we die, our kids won't know what's been going on!!!
Dotti---BE NOT AFRAID, Pope John Paul
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Dec 13, 2004 02:23PM CJAY wrote:

ok ladies so not to be rubbing it in or anything here, but i have a different problem. lots of mojo and no where to take it. the gas tank is full and there is no where to go. anybody know of any good dating services or match making services for guys who love bald women fighting breast cancer??
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Dec 13, 2004 06:21PM Mena wrote:

Hi CJay -- Wow, now that's a first! I guess that proverbial grass is always greener.....

I'll get our resident researchers on this, though I'm sure you'll get some colorful replies.

Hey, if worse comes to worse, check out the sites posted here. These fellas don't take out the garbage or do homework with the kids either. But that's not what you need anyway!
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Dec 14, 2004 12:40AM Glad wrote:

Just a quick mention that I adore my toy mechanic husband who not only did a tune up and replaced the batteries on all my handhelds, but fixed the light in the tip of one that I had completely forgotten had a light in it!!! Needless to say, we had a lovely weekend!!!

CJay, get yourself a pretend man! (vibrators) They don't leave the toilet seat up, either!!
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Dec 14, 2004 02:05AM slp516 wrote:

I did not have a chance to read all the posts in this thread, (I am at work) but I can relate. I am 28, married 2 years, no kids, and post chemo & rads. I am ER+ and now on Tamoxifen. I was on birth control for years, and it is so ODD to now have to use condoms!!! I hate them rubbery things and it really changes the mood when you have to stop to put one of those freakin' things on!! It's like you feel nothing with them things on. My poor husband. As supportive as he has been, I really could care less about sex right now. It is hard too when you have such short hair that you look like a boy. You just feel so unattractive. Anyway, just wanted to add my two cents.

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Dec 15, 2004 11:16PM Sphynx wrote:

This post was slipping to the second page. So, I thought I'd post a "mojo joke". Don't go there if easily offended...

rated X - difference between men & women's ....
Dx 2/28/2003, Stage II, Grade 3, 1/3 nodes, ER+/PR-, HER2-
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Dec 16, 2004 02:39AM Mena wrote:

Sphynx -- You dog you (get it????? lol). Cripes, that's hardly x-rated! Look at how we talk and the sites we post.

I went to the site lolololol and it is ADORABLE!!!!

Thanks for the laugh. I hope everyone who visits here will click on that link. It's so true.............

Also, I did finally get to Liza's link on the Drs. Berman & Berman. Excellent article. Anyone who's reading this thread can benefit from that article.

Thank you Liza, Resident Researcher, Mojo Thread. You rock!

Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Dec 16, 2004 03:10AM iodine wrote:

I loved it!!! Sent it to every woman I know, including my daughter and her friends!
Couldn't laugh out loud, dh is taking a nap!
Dotti---BE NOT AFRAID, Pope John Paul
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Dec 16, 2004 05:02AM hooptiedoo wrote:

That is SOOOO cute!!! At work I use a Mac, and instead of the "Eep!" sound, I've got it set on squeak toy. It is hysterical to hit that button over and over and hear that squeaking!

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Dec 16, 2004 09:01AM SillyMama wrote:

Y'all are so great! I've been too bummed to even read this thread, but you sure made me feel better.

I'm a secretive one (like iodine) who leaves the "back" massager under my side of the bed. Always worked before...

But when I finally revisted the experience recently, there was nothing except a long lasting expectation. I guess between the SSRI and the Tamoxifen, something happened. Or I mean, nothing happens... Waah! I don't think new batteries are the answer!
I want my mojo back, too!

:-D My human kid is cute, too! Dx 6/2004, IDC, 0/7 nodes, ER+
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Dec 17, 2004 02:07AM SpanArtist wrote:

DonnaS...when I was on the SSRI Zoloft several years ago (way before breast cancer), it virtually killed my sex drive. I had ZERO interest or ability to bring myself to orgasm (not to mention, my partner at the time couldn't either). I'm on a failrly new anti-depressant now as of recently called Cymbalta, which is in the SSRI family but doesn't have the sexual side effects. Just thought I'd pass that along, in case it might be helpful to you. Here's a link to the Cymbalta web site, in case you want your doctor to take a look at it:
Dx 10/28/2004, IDC, <1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Dec 17, 2004 03:50AM Mena wrote:

Liza, Liza, Liza, doing your title proud! Thank you!
Dialing now. Seriously lol.

Ok, I'll address your email here and NO you are not prying. Don't be silly. About the Hitachi Magic Wand...No, I haven't had the right time or desire, honestly.

BUT noteworthy here is that the Drs. Berman & Berman advocate "...use it or lose it...", which was suggested here by Incognito a while ago. High fives sister.

Between them and everyone's curiousity, including my own, I will get on it if Glad does a cheer for me. She's got a title to uphold also lol.

Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Dec 17, 2004 10:45AM Glad wrote:

Oh Mena she's so fine, she's so fine she blows my mind! HEY MENA HEY MENA!!

M-She's Manic Mojo Mama
E-She's Energetic
N-She's doin the NASTY tata
A-She's Alphabetic!

What's that SPELL????
Mena MEna MENa MENA!!!!!!!!!!!!!!!

OK, I suck at this cheerleading stuff, I admit it, LOL. I tried out for the squad once, (always was one of those kids that the gym teams would say "OK, darn it we'll take Glad", lolol)and did not make the team. Pathetic!

But hey, I enjoyed trying...

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Dec 17, 2004 02:22PM SillyMama wrote:

Hmmmmm, Liza, Thanks for the encouraging words. It still could be a combination of things, and you're right, that I can still try out some different SSRIs.

When I get discouraged I don't think very creatively sometimes. I appreciate the name of the med. I'll bookmark it and take it up with my doctor. I'm sure she would be ameniable to switching around for my best benefits.

Good idea!
:-D My human kid is cute, too! Dx 6/2004, IDC, 0/7 nodes, ER+
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Dec 17, 2004 10:22PM Mena wrote:

Lmao........Glad! The "nasty tata?" hahhahahahahahah......

OK lol that alone reserves you a spot at the top of the pyramid. Remember Glad, in this forum you are Cheerleading Captain. I will send you your varsity M. You will be the envy of your neighborhood hahahahaha...

Well, I had big plans for last night. Unfortunately, I also had two martinis. Then Connie called and I think I fell asleep while she was talking to me omg.

I just woke up fully clothed in the family room, the phone on the floor next to me hahahahahha. Too much holiday cheer. Hubby is pissed. I'm gonna NEED my toys now. Lemme go plug that sucker in........
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Dec 18, 2004 02:42AM SpanArtist wrote:

First off, GREAT cheer, Glad. By the way, I tried out for cheerleading in the 7th grade and ALSO didn't make it, so from one flunkie to another (lol)...
Secondly, Mena, I will expect a FULL report on the "BIG GUN" when you recover from your hangover (lol)...
Thirdly, DonnaS, let me know what happens with the Cymbalta. AND the vibrator that works for me is the previously-named "BIG GUN", aka the Hitachi Magic Wand, which can be purchased online. It's a VERY powerful electric vibrator but there's no need to fear it because YOU are in control of it. I tell ya', it works WAY better than battery-operated vibrators for me, and better than other electric ones too...might be worth a try! Here's a link:,att311407--777-,cat_id--23000200.html

I think you'll have to copy and paste this link, but it will work if you do that. GOOD LUCK and let us know what happens!
Dx 10/28/2004, IDC, <1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+

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