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Bottle o Tamoxifen

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Comments

  • Barbie7
    Barbie7 Member Posts: 126
    edited June 2008

    Yeah, I read about the sock thing somewhere on this site a couple of months ago.  I tried it that very evening and also ripped them off in the middle of the night.  I smiled when I thought of the thousands of ladies across the world doing the same thing.  ;-)  Always worth a try though.

    Lynn, it is good to be back.  I'm having a pretty good week.  Congrats on your last day of work.

    My SE's from tamox have been plentiful.  I have joint, bone, pelvic and abdominal pain & cramping and nausea every day.  I have no appetite and I have lost some weight, although I'm also quite bloated.  I have memory problems, hot "flushes" and night sweats.  These SE's effect my daily life.  I continue to work and do as much as I can, but it is a daily struggle. 

    On the upside, I have spontaneous orgasims (small little ones - not the Meg Ryan in a cafeteria full blown ones).  I have found that the hair on my legs grows considerably slower (I no longer have to shave every day!) And finally, I have a whole closet full of new shoes (also due to the tamoxifen).

    I have my first "cancer" massage today and my first accupuncture session tomorrow.  I'm hoping these will be my ticket to fewer SE's. 

    Barbie 

  • ImShelle
    ImShelle Member Posts: 2
    edited June 2008

    I had hot "flushes" in the beginning as well but after the first year they subsided.  I was pre meno though and had my period and period rage the whole time.  I had joint pain as well which resulted in follow up scans to check for more cancer (negative, thank goodness).  I was on for 2 years, 7 months (but who was counting) and am off now trying for a baby (or should I mention that i AM pg all be it very early stages).  Oh and i GAINED weight on the tamoxifen.  Thank you tamoxifen.  :(

  • dcbkc
    dcbkc Member Posts: 137
    edited June 2008

    YelRose,

    I stopped the tamox for 4 weeks so my onc could verify that the s/e's were from the tamox and not something else going on.  The hot flashes got far worse before they got better -- it took about a week and a half.  So hang in there, they might go away for you too. 

    Virginia,

    I appreciate the sock suggestion but I agree with Harley -- no way that works.  The last couple of nights I've slept with my feet outside the covers -- we have the A/C running and a ceiling fan over our bed.  I actually have slept through the night practically -- I wake up for about a minute then go right back to sleep.  And then only once!  I'm convinced if I keep my feet cool, so goes the rest of me.

    As far as weight goes -- at first I lost weight.  Since I took that 4 week break, I've leveled off -- no up or down. From reading all the posts these last 5 months, I don't think there's any rhyme or reason to who gains and who loses.

    So I started working out again this week and I start my job tomorrow. I was talking to someone today and I was telling her about all of you -- what a great group you are.  If I haven't said it lately -- you all pulled me through the rough parts and I can't say thanks enough.

    Deb

  • Harley44
    Harley44 Member Posts: 2,126
    edited June 2008

    Cynthia,

    It IS a pain, when you have to get a refill on any of your medications, and your regular dr. is out of town.  My primary care dr. went scuba diving on vacation, and flew home the next day, which even I know is a NO NO!  She got 'the bends', and now she has serious complications from this diving accident, and will not be able to return to her practice.  I have started seeing her partner, and he seems ok.  He really seemed to care, when I saw him on Monday, and I mentioned the depression, he said 'you shouldn't have to go on feeling that way.'  I told him I would call if things got worse.  Also, his wife had bc 24 years ago, when she was 32, and now she is 56 and doing just fine.  He said to me "You will have a sex life again."  Wonder WHY he said that? 

    Sorry for rambling, I just wanted to let you know that I understand how frustrating it is when your regular dr. is not available, and you have to see someone new.

    It's good to see you posting too.  Hope you're doing great! 

    Hugs

    Harley

  • larousse
    larousse Member Posts: 32
    edited June 2008

    Barbie, new shoes? did your feet get bigger on the tamox? what do you mean by spontaneous orgasms? do they happen at any moment any place, just like that? LOL... Maybe the cool shoes in bed would work better than the socks? with the spontaneous orgasms... hmm... We could make a funny comic strip with all that stuff.



    Well now I know I have a good excuse for forgetting to pay my bills on time. I can imagine calling Visa and begging for them to take out my late fee with the excuse that I am taking tamoxifen. Do you think that they will go for that?



    Okay, back to work...

  • LoriFL
    LoriFL Member Posts: 587
    edited June 2008

    Shoes???Is that shopping therapy or a SE of tamox?

  • LoriFL
    LoriFL Member Posts: 587
    edited June 2008

    Shoes???Is that shopping therapy or a SE of tamox?

  • Miss_Lolli
    Miss_Lolli Member Posts: 72
    edited June 2008

    Gosh, well I've missed so much it's just too late to say what I'd like to each of you, but I'm so sorry to those of you having such a rough time with se's (and other things) and every single one of you are in my prayers. I do read and keep up with what's going on, just haven't had much to add lately.....

    Barbie! A special hello and big hug to my fellow Jan rad sister with the cool shoes. Hope things get easier for you hon.

    I was just amazed how many of you mentioned right hip pain!!! I had some noticable (but not consistent or constant) pain there over the winter. Haven't had any lately, so I hadn't thought about it. It's just odd to me how all of a sudden I notice that if I sit in one position too long my joints will stiffen up!! HEY...that kind of crap is for "old people". lol  Well...I guess I am now, but I sure never felt it before. It is so hard to sort out what's the little white pill and what's just me turning 45 sometimes. I guess if I have to wonder if they're se's or age, I should be grateful. It means they are minor and haven't interfered with my life.

    JapanLynn, we must have the same reactions because besides our matching hip pain, my only other bothersome area is also my shoulders. They can get quite achey at night, but have been pretty good lately. I wonder if the weather does have something to do with it?

    For the newbies who asked about side effects (I'm only on bottle #3 myself). I'm pretty sure I got "flushes" the first week. And every once in a while I'll roll over in the middle of the night and feel dizzy for about half a second. Although hasn't happened lately.

    Basha...you got me to thinking, I may need to pay attention to see if my little flashes are cyclical. Hmmmm I know it seems if I wake up for one I wake up for a few...basically just long enough to whip off the covers and go right back to sleep. I've only had a couple during the day, and it seems as if I sometimes go days w/o having one. So I guess it could be a cycle, or could just be that I'm sleeping too hard to notice and wake up. Come to think of it...since I take my pill in the evening and seem to get the hot flushes at night, I suppose I'll never know which for sure.

    Layne....you're talking a lot because you are acknowledging everyone, and I think that's sweet! It's very different from babbling (see above for example). LOL

    Shelle...wishing you very good luck with your pregnancy. Please keep us posted.

    Ulla...did you get your test and how are you doing?

    Sorry if I missed questions, I have the attentions span of a flea today. lol

    Hugs to everyone! This train is going to need more cars soon....

  • sue_blue
    sue_blue Member Posts: 152
    edited June 2008

    I, too, recently finished rads and have taken tamoxifen for four days now. So far, so good. I will be following this thread for the next two years as I ride this train. I hope for the best along with all of you. I can't tolerate the effexor, so hopefully I can get by the best I can.



    Larousse, your comment made me laugh out loud. I was also wondering how the new shoes played into the whole picture???



    Hello to all.

  • Munchy
    Munchy Member Posts: 59
    edited June 2008

    Ohmygosh! I laughed so hard at your last posting, Larousse. I was going to ask the same questions about the orgasms and the shoes! I just don't get it. But I want to. I like both!

  • Barbie7
    Barbie7 Member Posts: 126
    edited June 2008

    Ok ladies, settle down...  The shoes and the orgasms are unrelated.  Although the picture you painted Larousse was quite hilarious!

    First the orgasms - yes, they happen anywhere at anytime.  Like I said though, they are quite small.  They last only a few seconds, but it certainly adds a little spice to an otherwise boring meeting, or baseball game, or tv show...  like I said, anytime. 

    Second, the shoes.  While some may feel they are therapy, I believe my rush to buy 7 new pairs of shoes in a span of 3 days must have been drug induced. ;-)

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited June 2008

    Ok, you all have me rolling on the floor laughing!!  I was on a quest for Manolo Blahnik shoes for a time...I wanted to explore my inner Carrie Bradshaw...alas, I was unable to find her in my size 11 (yes you read that right) feet, and quickly abandoned the thought of purchasing the Manolo's...

    Welcome Newbies!  :)  Glad to have more riders to share their stories.  I'll echo the other ladies...I can always count on a warm shoulder to *cry* on here or a good pick me up (e.g. the shoes and orgasm stories!)

    Virginia 

  • larousse
    larousse Member Posts: 32
    edited June 2008

    Barbie... LOL... you need to report the orgasms SE to the drug company, maybe more women will be willing to take the drug if it is described in the warning blurb!



    Here, in Boulder CO, the shoe's fashion statement are Keens and Shimano biking shoes... boring...

  • Susie2
    Susie2 Member Posts: 5
    edited June 2008
    Well fellow riders...I have boarded the train.  Good to see some of the april rad girls here...murphmort, Larousse, SueBlue and Munchy..I guess we all made the decision to take that pill!!  It took me 2 weeks but I finally downed the first one last night and one this morning.  I am doing 10 mg AM and 10 mg PM to see if I can tolerate it.  If there is a se from a drug..count me in on it.  So far so good though.  So those with the se's...how long before they kicked in??  Im especially interested in the shoe obsession and little orgasms. I better keep that one to myself or hubby will be all over me.  Poor guy has been kept at bay thru this whole mess since I have had zero desire for sex....so hoping those mini orgasms are part of my se'sLaughing
  • larousse
    larousse Member Posts: 32
    edited June 2008

    Yes, I see a lot of familiar fellow raders names from April. Good to see you here.



    I am also anxious to hear when the SE started for most. I am only on day 4 and felt a slight pain in my hip and of course immediately attributed it to the drug and I am also tired, but have been exercising a lot since I finished rads, so it can be from body usage.



    I saw the rad onc yesterday and he said that an abrupt drop in estrogen can lead to noticeable memory loss... I also said that I will never see him again, at least for BC, since next time it is a mast for me, I liked the guy, kind of funny, short and stout, not very healthy looking...



    Susie2, after all these years with the same guy, sex desire isn't huge for me either, but usually when things gets going it does come on, so I sometimes give in even if I don't feel like it, and am usually please with the results... ;)

  • stefie
    stefie Member Posts: 25
    edited June 2008

    hi all      I am new on the boards so please bare with me, I don't know all of the lingo yet.  I am 51 and was diagnosed last Sept., had a partial mas with nodes removed. I had radiation and started the tomax the first of Jan.  So far it has been a nightmare!!!  The worst is the hot flashes and the night sweats.  I feel at times that my head is so hot it is going to explode and sometimes after i have a headache with palpitations and tiredness.  This goes on all the time of course not all of them are as bad.  I am also starting to have leg cramps.  Since this all started i have lost 40 lbs with out trying.  They do not seem to be worried about the weight loss, I guess they figured I needed to lose some anyway.  I would like to know if any of you are also experiencing these side effects??  I have tryed the meds for the hot flashes and they do not work for me so far. Help I think I am on fire!       

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited June 2008

    Hi Stefie- I like your avatar...makes me think of Hawaii.  I only had mild hot flushes...not really hot flashes.  I was lucky in that respect.  I have noticed an increase in leg cramps...calves and feet...Very very painful and annoying.  I don't have too much of the bone or joint pain.  I hope you end up acclimating to the drug...I think that I have.  I sincerely hope that the ends justify the means...

    Tonight is the first night I noticed how much "perkier" my rad boob is...  My other boob is saggy...  :O  Bummer...and the rad boob (maybe b/c it's lifted) is plumper.  OYE OYE OYE.

    TMI- sorry...just had to share... 

  • larousse
    larousse Member Posts: 32
    edited June 2008

    Stefie, so sorry about the hot stuff. You lost 40lbs? have you lost your appetite on Tamoxifen?



    I thought I would share with Tamoxifen gobblers this news that came to me this morning. A 44 yo woman I know had stage 1 a few years ago. She wanted to save the breast and had multiple lumpectomies, don't know the margin details. Anyway, she wanted to treat herself alternatively, no chemo, no rads, no drugs, just juices and diet stuff, and now she has mets to the lungs. There isn't much to say about this story, but I just wanted to say that I am realizing that tamoxifen is another weapon to win the battle and it is probably worth enduring the side effects. I know that a lot of you guys out there are doing just that. Just my little blurb for the day.



    On a lighter note, I am still waiting for Barbie's special SE to kick in...;)

  • yellowrose
    yellowrose Member Posts: 181
    edited September 2010

    -

  • JapanLynn
    JapanLynn Member Posts: 211
    edited June 2008

    Good morning, riders--

    My big news: I'm officially on vacation!!  It's Monday morning, and I'm a lady of leisure...temporarily.  Of course, I have lots of little projects around the house I want to accomplish before I go to the states on the 30th.

    My hot flashes are continuing...and more during the day than at night right now.  Do y'all think it's weird that after seven months of tamox and a few night sweats (and joint pain) that I've suddenly started up w/ the flashes??  I wonder if my effexor needs to be increased...I'll ask my onc this summer when I see him.

    One other little niggling thing...yesterday my bad boob ached, and felt swollen and a little hard.  Also, I noticed last week that it was pink...could this be radiation recall?  Sheesh...it's always something.

    No mini- (or maxi-) orgasms to report, a la Barbie, dang it.  Stefie, sorry you're suffering so; hope you get some relief.  Yellow, good luck w/ your surgery...glad you're feeling so much better sans tamox.  Arimidex is certainly worth a try, esp. given Larouse's story in her latest post.  Keep us posted on how things go.  Our Basha must be out rowing her heart out.  Virginia, it looks like that awful heat in your area broke, thank heavens.  Harley, how are you feeling these days?  Layne, what's up in your neck of the woods?  Sorry for all those I missed...thinking of you, too.

    I'm taking my neighbor to the bus this morning as she leaves for the states, and my cat to the vet.  Sleep well, and happy Monday (a contradiction...)!

    Lynn

  • stefie
    stefie Member Posts: 25
    edited June 2008

    Thanks to all for the input.  It is nice to finally get in touch with people who are going through the same thing.  People do not seem to take BC as serious as they used to.  I figure with my flashes and sweats I will blend right in for the summer, I live near the beach, so there is alot of it going around.

  • ashaby
    ashaby Member Posts: 200
    edited June 2008

    Yay, Lynn, finally a free woman. Yes, I've been rowing up a quiet storm. Adult clinics are over so I can now just row for pleasure.

    So gals, I've been on Tamox for 7 months and really have very few se's, including flashes. Everything has died down. The achy foot turned out to be plantar faciitis, getting better.

    What I do have are snap peas, lettuce, arugala, snapdragons, all in my garden. Lovely and luscious.

    My DH is going to Italy for 2 weeks on a bike trip. I hope Barbie's se kicks in right about then.



    XXXXOOOO Basha

  • ashaby
    ashaby Member Posts: 200
    edited June 2008

    Yay, Lynn, finally a free woman. Yes, I've been rowing up a quiet storm. Adult clinics are over so I can now just row for pleasure.

    So gals, I've been on Tamox for 7 months and really have very few se's, including flashes. Everything has died down. The achy foot turned out to be plantar faciitis, getting better.

    What I do have are snap peas, lettuce, arugala, snapdragons, all in my garden. Lovely and luscious.

    My DH is going to Italy for 2 weeks on a bike trip. I hope Barbie's se kicks in right about then.



    XXXXOOOO Basha

  • ashaby
    ashaby Member Posts: 200
    edited June 2008

    Yay, Lynn, finally a free woman. Yes, I've been rowing up a quiet storm. Adult clinics are over so I can now just row for pleasure.

    So gals, I've been on Tamox for 7 months and really have very few se's, including flashes. Everything has died down. The achy foot turned out to be plantar faciitis, getting better.

    What I do have are snap peas, lettuce, arugala, snapdragons, all in my garden. Lovely and luscious.

    My DH is going to Italy for 2 weeks on a bike trip. I hope Barbie's se kicks in right about then.



    XXXXOOOO Basha

  • murphmort
    murphmort Member Posts: 76
    edited June 2008

    Thanks for the info, ladies.  I am going to take my first Tamaxofin pill tonight.  I had a regular checkup at my ob/gyn today and she explained some of the meds that can be prescribed that will help offset the SE's.   I'm hopeful the mood swings will be minimal, but I pretty much know the flashes will start soon.  I don't see my med onc until 7/7, but she did tell me to call her if I start having a hard time with the Tamaxofin.  I do plan to take the pill before I go to bed, which some folks have recommended. 

    I have a friend who did not have any weight gain to a friend who did gain 27 pounds, and both ladies were my age (46) when they started Tamaxofin.  I stop lifting weights (10 lbs) since the surgery/rads, so I might start that again to help boost the metabolism that seems to slow down while on Tamaxofin.  I also walk everyday and I figure that I'll just make sure I do that, maybe I won't get the joint pain?!

    My skin is really looking good from the rads, and I'm very happy about that.  I wore a regular bra today for the first time in months!!! 

    I also have to work on the appeal to my insurance company for the BRCA testing.  GRRRRR.   My medical oncologist will have to help me with that one.  I am determined to fight it and have it covered.

    A friend sent me a book entitled, "A New Earth, Awakening to Your Life's Purpose", and felt it would help me.  I'll let you guys know if it is a good read or not.

  • larousse
    larousse Member Posts: 32
    edited June 2008

    Hi murph, good to see you overhere, will do the precise % count down for the 5 years, like you did with the rads? ;)



    I just turn 46 as well and worried about mood swings as I usually have really bad PMS, I start growling and barking for no good reasons at anybody who comes close to my premises. Keep up the walking and weights, I also intend to not gain weight, we'll see. Hmm... I always wonder if it is chemical or psychological the whole weight thing. I gained a few lbs on rads because I ate a lot and stoped exercising at the end.



    When do the sweats and hot flashes starts?

  • murphmort
    murphmort Member Posts: 76
    edited June 2008

    Hi Larousse - Too funny about the %!!!  LOL!  I am an analyst for my job, so I have a tendency to put everything into numbers!!!!  Everytime I go see a new doctor, they ask me what my job is!  My kids even laugh about my data brain.  I'm hopeful that Tamaxofin doesn't have an affect on that, as I'm back to work on July 14th.

    I lost a few pounds during rads, but I was very aware as what I was eating so I would have the energy. Now that I'm done, I have a tendency to have a beer or two on the weekend.  I'll have to watch that, as it's easy to put weight on even tho I drink Michelob Ultra, which is as close to water as a beer can be! 

    I am meeting with my friend who was my rad therapist and the other rad therapist  that would treat me on June 27th for a beer!  We made that promise when I started rads back in April.  They were so good to me and that helped me with my PMA (Positive Mental Attitude).

    The nutrionist at Boston Medical said alot of the weight gain is the diet and lifestyle.  So, I'm figuring that I'll be careful about what I'm eating and get back to lifting weights.  I also have eliminated all soy from my diet, and that means alot of processed foods aren't in my diet now (I loved Wheat Thins).  I have found other foods at Whole Foods and Trader Joe's that are nutritionally better and that taste good.  I have only found 1 item that I threw out ... it was an organic salad dressing from Whole Foods.  Absolutely disgusting!!!!!   Now, I just make my own. 

    I will make the plunge tonight ... I just hope I don't forget to take it tomorrow night.  The Celtics/Lakers game is on and we are big sports fans, and since we live in the Boston area, we are fortunate to have successful teams.  It's a great diversion from life!  Smile

  • larousse
    larousse Member Posts: 32
    edited June 2008

    Well, it has been a week for me on tamox. I have been feeling a bit nauseous now and then. It is short lived. I guess it could be the drug or it could be just being human. I also feel a little tired, again I don't really know if it is the tamox or being a busy working mom who sometimes works out to hard. I also felt hot at night but it is summer... how do I know if it is the tamox?



    Boy there are some scary threads out there about other cancer due to the drug. grrr, how do we know we are doing the right thing?



    It's like the red wine. It is good for the heart and bad for BC. More people die of heart attacks than BC, but we are here because of BC... I still like my wine... why is there always the bad side. But not always, there are coffee studies that comfirmed that coffee isn't bad for you. It may even be good, that isn't proven yet. I wonder about chocolate, they think it maybe good for you, I guess it can lead to weight gain, like tamox... whateeeeeveeeeeer...

  • Susie2
    Susie2 Member Posts: 5
    edited June 2008

    Larousse...I get that nauseous feeling now and again myself too.  Now forget being hot at night..I am an oven!!  During the day I have started to get the hot flashes too and they start from my toes and go clear up my body and I feel a bit dizzy and nauseous when that happens too.  Oh, and about that wine...I wont give that up right now because even if you do everything right, there are no guarantees on anything.  I will try to do everything else right and take care of myself but not to the point of feeling like BC will rule my world.  Right now I am too busy back into life!!

  • Christianne
    Christianne Member Posts: 9
    edited June 2008

    It's day 14 on the Tamox for me and so far so good.  You guys are all a riot to read your posts!  It's good to have humor through all this.

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