Bottle o Tamoxifen
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Funny but not so funny......I started tamoxifen in May. I've lost about 20 pounds since my surgery in January, which I expect is mostly being off chemo, started feeling better, more active, and Ritalin has reduced my "cravings". HOWEVER - I was wearing a size 16. Now, my rear and thighs are a size 12, but my waist is still a 14. If my pants fit my waist, they're baggy, if my pants fit my rear, they're tight around my waist. I need to lose 5 more pounds to not be in the "overweight" category. Then I'm going to try to hold it there until my DIEP. Maybe the DIEP will help make my waist/stomach size match my rear size. I don't know. It's all making me tired.
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Laura: If you've only gained 5lbs. you are VERY lucky~!!!! :O I hear ya that's it's all in the middle, same here, but much more weight gain, absolutely hate it. Off tamoxifen now after 3 1/2 years, and on Aromasin, so we'll see what happens.
angicpa: Same with you, not bad on the weight on tamoxifen, but funny, but no, not so funny on the different sizes! (What is a DIEP?) I know I gained since chemo, since nothing sounded good to eat, so the chemo nurses all said, EAT what you FEEL like...so I did...now I can't lose it.
~juli
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Theresa! I looked at my bottle of Vitamin D...It's 1000mg.......But I also take the Fish oil/with Omega 3, the multi-vitamin, Calcium & Glucosamine....I really FEEL good, so I'm sticking with what I am doing....Maybe you can find a "substitute" that is easier on your stomach? Or just eat a truck-load of Spinach, Ha! Costco has the BEST spinach!
I think as we get "older" our weight just shifts! I would LOVE to have the body I did when I was even 50! But even though I eat less, my body doesn't "care" and has a mind of it's own!
Julie! Did someone tell you to take 5000 of the vitamin D? How do we know if we should take more....I'm only one pill a day....I have read this thread for almost 9 months now, & I just follow what you gals are saying! The Doctor says I'm doing great though!
I'm going on the "walk" this Sunday! I'm going to celebrate all you gals here at BC.ORG! I didn't want to do it, but my Daughter talked me into it...She wanted to do it for .... me!
Love you gals! xoxoxoxoxo
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I get a vitamin D 25 hydroxy test done every time I get bloodwork done. My breast surgeon wants to keep the level at least at 45 ng/mL. I finally got there in August.
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Chevyboy: I love spinach, but I'm the only one in my family that does!! I treat myself every once in awhile. :-)
I'm pretty excited that I was able to find a multi vitamin that my stomach can tolerate, so I'm sticking with that. I'm also happy that my PC tested my vit D level, so now I know and can start to build it up. My sister told me that she takes 5000IUs in the winter. As my stomach gets used to all the new vitamins, I'll try to build up to that level. I'll check with my PC, but since my sister works for my PC, I'm sure there won't be a problem with it! She's going to check my levels again in 6 months.
Yes to the tamoxifen adding weight to my middle. Ugggh!!!! Now that I'm feeling better on the vitamins, I'll get moving with exercise.
-Theresa
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Juli0212 - I may have only gained 5 lbs or so, but I already had too much to start with! LOL It's just weird though how much my shape has changed despite not a big flux in the weight. I went from an pear to an apple.
Chevyoy - What is the story on the fish oil? The only place I had heard that was from my Rad Onc. I did try it, but hated the fishy smell/taste. I also had a hard time getting that huge capsule down. Any recommendations?
I will ask about my vit D level. I don't think they've ever tested it.
Laura
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Morning Laura....I KNOW!!!! It's like swallowing a Carp! If you take it with a meal, it isn't bad...My Brother-in-law gave my Husband a bottle of Fish Oil, that he didn't like! So my DH threw them on the front seat of his car while they went in & had a "couple beers".......2 hours later, he brought them home!
He handed them to me, & they didn't move! They had all melted together, bottle & all, into one huge blob! It was probablyl 120 degrees in the car! I put them in the refrigerator over-night, & got most of them separated, but they were all mis-shaped! (Is that even a word?) And they were kind of "square & flat" & you get the idea. I tried to take one, & it was like trying to swallow a 2" by 2" piece of plywood!!!! I put them all in a gallon jug, filled it with warm water, & when they dissolved, I poured them on my tomatoes! Maybe THAT'S what we should do!!!!!!! Feed our vegetables our vitamins, then EAT them! Ha!
I take my pills by filling those 7.7 Arrowhead plastic bottles with the water mixed with those little SF Apple packets from Walmart...And when you hold your head up to take the pills, they go down a lot easier than drinking from a glass....at least for me. The Fish Oil gel caps all look the same to me, but just take them after Breakfast...try that.
xoxoxoxoxoxo
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Hi Laura~Oh gosh, I do hear ya on adding to the weight. I was a healthy 140lb.'er during chemo, then *BLAM* add tamoxifen, and I cannot get below 177. I'm hoping now being OFF tamox and on aromasin, it may help (or may get worse, who ever knows?).
The fish oil has helped me tremendously, especially with triglycerides. I take 9 grams a day and use the NON-fish-smell ones (1200mg each). I actually take 2, 2 welchol (which are just a bit smaller than the fish pills) and 3 of my daily dose of 5 vitamin d pills (1,000ius each) all at the same time! Never choked, but yeah, they're big. Good Luck! ~juli
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chevyboy: I love the idea of just dousing the plants with this stuff!
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Where did everybody go? Did everyone just get better, & have stopped taking Tamoxifen? If so, that means we are all doing good!
And honest, BC.....I had a lot of old vitamins one time, so I just put them in with my soil in my garden, or put them in the gallon jug & filled with warm water & watered the tomatoes! So THAT way, we don't have to swallow the pills....just eat the tomatoes, Ha, ha!
Oh well....it just MIGHT work!
So could someone else just post? It's lonely in here! xoxoxoxoxo
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Chevyboy - You are SO funny!! Me and my Mom were reading your post about the fish oil incident and were just cracking up. I bought some this week, but haven't started taking them yet. My Mon-Sun pill box is already full!! Crazy how many Rx & Vitamins I take now, and I've never been good about taking vitamins in the past. I agree w/you on the bottle vs the glass in taking pills. I need to keep one of those handy. LOVE your profile pic!
Juli0212 - Let me know how your switch goes to Aromasin. I've been thinking of doing that. My Onc said there is no specific protcol that he can follow with me. I had a lymph node that popped up on a scan once, and started Tamox and it went away so maybe that's why I'm still on it. But I thought Aromasin was what we are supposed to be on after menopause? I guess I need to do some research. He basically left it up to me and without any better knowledge I just stayed with what I knew and could live with. I'll see him on Friday.
Gals - another question not specifically related to Tamoxifen,.....I'm 44 and have NO sex drive (no ovaries). I had another doctor recommend a low dose testosterone cream to help with libido AND to help me shed a few lbs. He said he's only had one Onc not allow it, has treated many survivors with this. I just know my Onc is going to say no. He's like a strict father figure! Has anyone else tried this and/or gotten the Onc's blessing? I need something or I'll be FAT and DIVORCED!
Laura
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Hi Laura~Yes, I switched from tamoxifen (3 1/2 years) as I was pre-menopausal before chemo. Now my blood levels had consistently showed post-menopausal for a good couple years, so my onco switched me to Aromasin. So far, I'm finding my eyesight is really blurry reading up close, so not sure if even changing my eyeglass script will help it. I had bone pain at first, but now it seems to have lessened, thankfully. Still have the hot flashes/night sweats the same as tamox. With you having your ovaries removed and no sex drive, that IS important enough to warrant some intervention there. Usually the docs like to know about that. Good luck on the testosterone if needed, and a good talk with onco, and maybe a gyn.oncologist is needed for another opinion? all my best! ~juli
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Laura, although I have my ovaries, they seem to be working minimally the last year or two. I've been having long gaps between periods. Last one was 8 months ago. As soon as I started having menopausal symptoms, prior to BC, I started having trouble with sex life, mainly sensations and arousal. Then I started tamoxifen and lost all ability to respond or feel anything, I even quit the tamox for a month for this reason. My response did come back a little but never enough to satisfy me, so after trying all kinds of remedies and libido formulas, I finally got a prescription for testosterone gel a few months ago, and I know it's working great! I even think it's helping improve my mood, which is one of the effects it can have. I've never heard about it helping with weight loss though.
My Onc agreed that testosterone was not a problem at all, he even stated that it was once used as a treatment for breast cancer and that he thought it was a great idea. Guess he got tired of hearing me complain for months about my low libido and how much I didn't want to continue on tamoxifen because of that. If your Onc refuses, maybe you can insist that this is an important quality of life issue for you and that you will not take no for an answer.
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Laura, although I have my ovaries, they seem to be working minimally the last year or two. I've been having long gaps between periods. Last one was 8 months ago. As soon as I started having menopausal symptoms, prior to BC, I started having trouble with sex life, mainly sensations and arousal. Then I started tamoxifen and lost all ability to respond or feel anything, I even quit the tamox for a month for this reason. My response did come back a little but never enough to satisfy me, so after trying all kinds of remedies and libido formulas, I finally got a prescription for testosterone gel a few months ago, and I know it's working great! I even think it's helping improve my mood, which is one of the effects it can have. I've never heard about it helping with weight loss though.
My Onc agreed that testosterone was not a problem at all, he even stated that it was once used as a treatment for breast cancer and that he thought it was a great idea. Guess he got tired of hearing me complain for months about my low libido and how much I didn't want to continue on tamoxifen because of that. If your Onc refuses, maybe you can insist that this is an important quality of life issue for you and that you will not take no for an answer.
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Can I join the thread?
A bit about me - just finished 4 rounds of TC - will be doing a BMX next month with reconstruction. I am 37 and have a 2.5 year old and 7 month old - was diagnosed when my daughter was 8 weeks old - it sure was a blow! Saw my Onc today and he gave me the prescription for Tamox - said I can start next week, or after surgery, either way was fine with him. Also recommended an ooph later down the road as my BRCA was unknown clinical significance and he wants to treat it as BRCA1+ positive, not sure how I feel about that yet.
Anyways, that's about it for now - not sure if I can catch up with 284 pages of this thread so forgive me if I am asking duplicate questions - but what time do you all take your Tamox? I was advised I can take it in the morning or in the evening but to just be consistent. Thanks ladies!
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Welcome Aboard the T train In_Cognito!! Sorry you had to join us.
I finished my 4 rounds of TC in May. I hope I never have to do that again! I had a rt MX in Dec 2009. My ER+ was 95% so my surgical onc wanted to yank my ovaries as well. I am 43 and do not have kids which is fine but I just did NOT want to be in menopause so I am sure you are feeling the same thing. To me being in menopause was more devastating than the mx. I started tamoxifen in August which my gyn thought was kind of late but I wanted to get back to myself a little more from chemo before i started taking a pill every day. I also stopped getting my period right before my last chemo AND FINALLY got it back the day after my exchange surgery which was 2 weeks ago. I have never been so happy to get my period in my life. I felt like I was starting to cycle again in August so my onc thought it was important for me to start the T. I take it in the morning as soon as I wake up. I have had absolutely no side effects at all....so far.,...knocking on wood as we speak. Some women have thought taking it at night interferred with their sleeping with hot flashes and leg cramps. Taking ovaries out at this point for me is simply not an option. I feel like going through chemo was a test run of what menopause feels like and NO THANK YOU!!!
I don't know about you but when my period abruptly stopped I was having terrible joint pain every where. I felt like I was 100 years old!!! My onc is ok with leaving my ovaries in as long as I promised him that I took my pill every day for the next 5 years. Taking ovaries out is a BIG decision that you can't reverse. I would think about chemically shutting them down before I surgically removed them.
Good luck with everything you have coming up. The beginning is always the worse. You may also want to visit some of the reconstruction threads. They are very helpful and a great source of support. Excuse any typos or babbling I am on demerol as i had revision surgery yesterday
Stay Strong
Diane
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Welcome Aboard the T train In_Cognito!! Sorry you had to join us.
I finished my 4 rounds of TC in May. I hope I never have to do that again! I had a rt MX in Dec 2009. My ER+ was 95% so my surgical onc wanted to yank my ovaries as well. I am 43 and do not have kids which is fine but I just did NOT want to be in menopause so I am sure you are feeling the same thing. To me being in menopause was more devastating than the mx. I started tamoxifen in August which my gyn thought was kind of late but I wanted to get back to myself a little more from chemo before i started taking a pill every day. I also stopped getting my period right before my last chemo AND FINALLY got it back the day after my exchange surgery which was 2 weeks ago. I have never been so happy to get my period in my life. I felt like I was starting to cycle again in August so my onc thought it was important for me to start the T. I take it in the morning as soon as I wake up. I have had absolutely no side effects at all....so far.,...knocking on wood as we speak. Some women have thought taking it at night interferred with their sleeping with hot flashes and leg cramps. Taking ovaries out at this point for me is simply not an option. I feel like going through chemo was a test run of what menopause feels like and NO THANK YOU!!!
I don't know about you but when my period abruptly stopped I was having terrible joint pain every where. I felt like I was 100 years old!!! My onc is ok with leaving my ovaries in as long as I promised him that I took my pill every day for the next 5 years. Taking ovaries out is a BIG decision that you can't reverse. I would think about chemically shutting them down before I surgically removed them.
Good luck with everything you have coming up. The beginning is always the worse. You may also want to visit some of the reconstruction threads. They are very helpful and a great source of support. Excuse any typos or babbling I am on demerol as i had revision surgery yesterday
Stay Strong
Diane
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Hi Diane! I'm a Dianne too! (with two N's) . . .Thanks so much for all that information. I really do not want to take my ovaries out at this point. My onc told me to go on Tamox for a few years and we would have the conversation again - but I'd much rather chemically shut them down if given the option - actually I'd rather just leave them alone!
I'm keeping my fingers crossed for minimal SE's from this pill for me - glad to hear you aren't having many SE's from Tamox either! Thanks again!
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Interesting stuff about the testosterone. I've been trying to decide how much of the way I feel is poor body image and depression (mental) and how much is physical. I don't suppose it matters either way if quality of life is affected.
My oncologist was big on the idea of removing my ovaries (I'm 39), but I really resisted. He admitted that there's evidence that either taking tamoxifen or removing ovaries has a positive effect on recurrence, but there's not really anything that says that doing both provides any further protection. And despite the fact that I know I'm not having any more kids, I am just not ready for immediate menopause. So like you, in_cognito, my onc agreed to drop it for now and then have the conversation again later.
Welcome to yet another club no one really wants to be a member of! :-)
My worst SE from tamoxifen is joint pain, but the more active I am the better it is. I've tried both morning and night and don't see a significant difference. Other than the joint pain I have cramping around ovulation (though it seems to be diminishing each month), the rare all-out hot flash, and then occasional warm waves.
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Hello Ladies...
It's been a long time since I posted, it's good to see the familiar names and the new ones. Been through some big changes over the last few months, but healthwise doing good! Been on T for a year now and the only SE's are weight gain (grrr) and just recently leg cramps. JEANETTE, I will take magnesium/Potassium to see if that helps. Also just had my yearly bloodwork done and everything looks great except my B12 was low...hence the foggy brain. I'm taking an under-the-tongue supplement for that.
Jeannette, Caroline, Bonni, bcincolorado,cs, and TCK... good to "see" you all!
Kelly
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Morning gals! You know, it just makes me feel so bad for all of you younger women! I shall never complain again.....I mean I KNOW I must be the oldest gal around here! And you young women have come through sooooooo much, besides raising your little ones, & trying to stay healthy & happy! I congratulate all of you!
I'm 73, as the whole world knows, and I just WANTED to take Tamoxifen instead of Femara or Aromasin, or is it Arimidex? I had read a lot of info about the side effects of all of them, & for me, figured the Tamoxifen is the safest. And fewer side-effects. So onward & upward girls!
The libido? What's that?.....JUST kidding......We've been married 53 years & 10 days!
AND, we still "fool around" once in awhile. But "it ain't like it used to be!" So don't go fallin' over & going "eeewwww" because it's "still there"....you just have to work at it a little harder. I can't beLIEVE I'm talking to you "kids" like this! Just don't "give up the ship"......do whatever it takes to put a little spark back into these things! Okay, you can get up off the floor now...
Love hearing from you gals....finally! xoxoxoxoxo
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I have switched from Tamoxifen (3 1/2 years) now to Aromasin (due to chemo-induced menopause). I really did NOT have bad s/e's from tamoxifen, just the hot flashes/night sweats which I would've had anyway, as Taxol in one day smacked me into menopause at age 47 (I was totally pre-menopausal, periods regular every month, EXCEPT during the 8 weeks of cytoxin/adriamycin, I had a daily period). I did have some leg cramps, and one time had an ultrasound to make sure there was not a blood clot (there was not). Now on Aromasin, I notice that my eyesight has gotten very poor up close. Always trade-offs. I hope also the newbies on Tamoxifen have the fewest side effects. My docs never even mentioned the ovaries being removed (and I'd have resisted too, though we know our tumors are estrogen-fed). Good luck to everyone! VERY funny and nice post from chevyboy, love that! (BTW: I'm a ChevyGirl/Corvette after bc...bout darned time I had a sports car my bf said!
) ~juli0 -
Kelly,
Try the bar of soap in the bed for your leg cramps.
Worked for me! Now I still get one here and then but very rarely.
Catbird (Bonnie)
HI All Tamoxitrainers!!!!!!
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Hi ladies, another newbie joining the T-ranks! I've been reading a few pages, getting my feet wet. Started Tamox on Monday night. My onc recommended taking 1/2 pill in am and pm and it's working great- no side effects whatsoever. I take the half pill with a glass of water and either a meal or snack.
She had initially mentioned an ooph, but I was resistant and she dropped the matter. Maybe it's something they feel they have to throw out there, you know how Dr's are- CYA!! I can just hear them dictating in our charts "Patient was told the risks and benefits, offered an ooph/hyst..." so the 1 in however many rare patients that end up with uterine cancer can't come back and sue them. I'm sure that's what it is. Did you realize that even if you have an ooph/hyst you still have to take Tamox (or maybe it's an AI at that point?) and that you can even still get uterine cancer?! Weird, huh?
I've been on Gabapentin 300mg since chemo for hot flashes and it helps so much... so I don't know if that would have been a problem with Tamox!
Even though I wasn't sure about Tamox my onc said it was really important, probably more important than chemo (really?! Does that mean I could've skipped the darn chemo?!) So here I go!
Thanks for the tips and support!!
~Melanie
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Hi little Melanie! Welcome aboard! These Doctors! You just don't know what to believe anymore! But do all the research on all these different subjects! I kept a "note-book" with all my tests, reports, all the literature they gave me, print-outs on drugs, types of cancer, etc!
And I'm always asking Dr. Google something else!
A LOT of it is trial & error....at least with me....Like I can't take melatonin with tamoxifen....or ELSE I have to take Imodium AD ... Lots of it... ! But I take lots of vitamins to help EVERYthing! Anyway, these other gals can help you better than I can, with your "younger" issues....You gals are amazing....and my real hero's! xoxoxoxoxo
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Oh yeah, I forgot to introduce myself! The chemo brain lives on...!
I was diagnosed in Feb at age 38, had a lumpectomy and 6 Taxotere, Carboplatin, Herceptin chemo which I completed June 21st. Started rads August 2nd and completed Sept 21st and took my first Tamox on Monday night! I'm still doing Herceptin until next Feb.
I've got a bone scan next Monday because of darn back pain that's been hanging on me for about a month, I'm sure it's from the stress of the last 8 months!! (Well, that and my four crazy boys- five if you count my husband. And you really do need to count my husband!)
BCO is so helpful to me, I really love all my sisters here!! Thanks for the warm welcome Chevyboy. I loooove your picture...looks like my tuxedo cat, Mr. Binks. He's just about exactly that size!!
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Welcome to all the new girls, lots of younger women here. I don't blame any of you, especially with early stage cancers for refusing oophorectomy. This is my number one pet peeve, how quick some Oncs are to push for this surgery. And studies show that our ovaries do benefit the rest of our body, even for years after menopause. The problem with Oncs is they are focused completely on THE CANCER, and I feel that they don't always think about how some treatments can affect the rest of our lives, like bones, sex life, cardiac, brain function etc...
Being a nurse, I can tell you that CYA is a big thing. We always have to chart that the patient was informed of all the risks and options that were offered and if patient refuses, so be it. As long as we write in the chart that patient was informed of the options and risks.
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Welcome Melanie ~ I am sure you back pain is nothing. I too had the back pain I think it was residual pains from chemo and then starting tamox. Had a bone scan too ~ all was FINE as I hope yours will be.
BC.org is a lifesaver. I find such comfort here with all of you wonderful ladies ~ we are in this together !
Rgiuff ~ thanks for the info on the ooph and such, I always question myself but for now I am keeping my parts. Tamox wrecks enough havoc down there for me as it is !
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Wow girls, you have been busy today! I can hardly keep up! This dang work schedule is getting in the way with me connecting with my sisters.
rguiff - AWESOME news you gave me about the testosterone. That really gives me some hope. I'll see what he says on Friday about that.
Diane - I hear you about feeling like you are 100 yrs old. That's exactly how I feel. I bend over to pick something up and grunt on the way down and back up. My achin back. I'm only 44!
For those of you young gals that are debating about the ovaries.....think long and hard about it. I did a trial of Lupron for 9 months before I had them removed surgically. I thought that it would be the same. It's not. I have a lot more SE since my surgery. Don't let them rush you into that. Since I'm a two-timer, my Oncologist is probably more aggressive with the treatment. He says I'm in the "card carrying mafia" now and require additional surveillance and treatment. haha. Just another club I didn't want to be in.
Chevyboy- you have me laughing again. No, I didn't fall on the floor when I read about your libido. I think it's great you two are still fooling around. Now, with the Tamox and Melatonin, that might actually work for me since I have the opposite problem.
I do love talking with y'all. So great to have people to chat with that understand what we are going through.
Laura
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This place is so much fun! I mean it's fun to "talk" to younger gals, besides just women around my age, which takes in Methuselah & women of that sort! I just can't relate to all the problems with your ovaries & innards like that. I'm so sorry that we even have to THINK about that, along with breast cancer & treatments! You gals just hang in there....
And go rent a "good" movie!
That used to help with MY libido! .....Okay, okay, you're thinkin' "she's at it again!".......Love you gals! xoxoxoxo0
