Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

Bottle o Tamoxifen

1…2526283031…1022

Comments

  • ashaby
    ashaby Member Posts: 200
    edited March 2008

    Dear Melody, Thanks for your comforting words. It's a long story with my son; he dropped college a year ago after lots of trouble and now lives back with us. He lost his job this week, so it's back to square one with that. I want to ring his neck but he's 10 inches too tall!!We're planning a move out in the summer. (Him, not us)



    Cynthia, Yeah, I might be having tamox symptoms finally; crabby, poor sleep,achy feet again. I'm going for a long ski today to have a little fun. The snow is lovely...

    xxxBasha

  • ashaby
    ashaby Member Posts: 200
    edited March 2008

    Dear Melody, Thanks for your comforting words. It's a long story with my son; he dropped college a year ago after lots of trouble and now lives back with us. He lost his job this week, so it's back to square one with that. I want to ring his neck but he's 10 inches too tall!!We're planning a move out in the summer. (Him, not us)



    Cynthia, Yeah, I might be having tamox symptoms finally; crabby, poor sleep,achy feet again. I'm going for a long ski today to have a little fun. The snow is lovely...

    xxxBasha

  • nativemainer
    nativemainer Member Posts: 7,945
    edited March 2008

    Harley--

    check with your doc to be sure she was using the term the same way, but common use of "x years out" by medical folks simply means  a certain number of years after the start of a specific treatment, it does not mean the person is still on the treatment.  For example, we often say "She is 10 years out" referring to the diagnosis of breast cancer, or "He is 10 years out" referring to a hip replacement surgery.  When I hear "she is 10 years out from tamoxifen therapy" I understand the speaker to mean that the woman started taking tamoxifen 10 years ago, either took it for 5 years and was done or took it or 5 years and has been switched to an AI. 

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

    Native Mainer,

    Well... that makes no sense at all... why would she be worried about giving someone Effexor if they were not taking Tamoxifen any more??  I would think that they would HAVE to be STILL taking it for it to make a difference, in this instance. 

    Thanks

    Harley

  • nativemainer
    nativemainer Member Posts: 7,945
    edited March 2008

    Harley,

    good point. Unless the person also had depression and was using Effexor for that, there probably isn't any reason to be taking Effexor if not also taking tamoxifen.  I guess you'll have to ask your doc what that statement meant.  I didn't think tamoxifen was recommended for use beyond 5 years since after that the incidence of problems starts going up. 

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

    Native Mainer,

    I assume that my pcp dr. was talking about women who:

    1.  were 10 yrs. past dx.

    2.   were STILL taking Tamoxifen

    3.   She was giving them Rx for Effexor.

    If they were STILL taking Tamoxifen, then it follows that they must have mets...

    Thanks for the info.

    Harley

  • JapanLynn
    JapanLynn Member Posts: 211
    edited March 2008

    Hi, fellow riders--

    I'm happy to report that I took my first dose of Effexor this afternoon...woohoo!  It finally arrived.  I know it'll take awhile to get the levels high enough to do some real good, but I'm hoping for a placebo effect in the meantime since I'm doing something positive to fight the depression and hot flashes.  Wish me luck...

    These SEs are so strange.  I felt like crap over the weekend with back and hip pain...today I was pain-free.  We'll see what happens tomorrow.

    Basha, sorry you're feeling the wrath of tamox...I hope things even out for you.  My sister is facing a similar situation with her youngest son...he can be very sweet, but he can also be such a know-it-all.  They're setting a move-out date for him; he's enjoying hoarding his $$, so it's going to be a real wake-up to have to let some of it for living expenses.  Good luck w/ your situation.

    Harley, sending good karma and prayers to you as you go for your x-ray.  May it be nothing at all!  Please let us know.

    Hi to everyone.  Happy Monday...and here's to quick passage of what is for me, as a teacher, the longest month of the year.  We need a March holiday, and badly. :-)  Take care...

    Lynn

  • ashaby
    ashaby Member Posts: 200
    edited March 2008

    Dear Lynne, Ray for your Effexor. I'm a Lexapro gal myself.I have bipolar II which makes any slightly stimulating med, like Effexor, send me over the moon. I never had such clean cabinets as when I tried it!! lol

    Thanks for your kind words re your nephew. My son crashed and burned at college and now seems to be wanting to do the same in his life back home. The difference is his parents are right here! We're trying to figure out what setting would be best for him.



    Seems to me my Tamox se's get better when I exercise my achy joints. My brain too. Anyway, good Monday and take care.



    Basha

  • Miss_Lolli
    Miss_Lolli Member Posts: 72
    edited March 2008

    Lynn, I hope that effexor kicks in poste haste...so glad you got it!

    Sorry to those of you having a down time right now. I think this has been a looooong winter for everyone.

    I talked to my oncs nurse today and she said he likes to wait a month between rads and tamox. I don't want to disembark, so I guess I'll hang out in the sleeping car and try to stay outta trouble. lol  I celebrated being done with radiation two nights in a row over the weekend, so I'm staying away from the bar car.....just for now. Wink

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

    Lynne,


    Thanks so much for all the good karma and prayers!  I went for the x-rays, and I guess it went ok.  The technician took LOTS of pictures and then he took MORE of the LEFT side, so there MUST be something on the left side...  (taking LOTS of deep breaths and trying to do some positive self-talk...oh, and PRAYING!) 

    I talked to my pcp drs. office today, as I had to go there today with my MIL, because she is switching drs. and will see my dr. to see how she likes her.  I asked when they would have the results.  She said they will have them tomorrow, and if I haven't heard from them, to call tomorrow afternoon. 

    Thanks!

    Harley

  • Kara
    Kara Member Posts: 17
    edited March 2008

    Cindy, Is there a WebKinz car on this train?  My sister got me started playing with one too.  Some of the games are good for the brain.  'course I like playing some of the other games too.  Look me up some time ... RosieBuds1.

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited March 2008

    ((((((((((((Harley))))))))))  I'm sure everything will be fine.  My onc says you are on like "red-alert" for a while after the Big C.  I got home from the hospital on Saturday and saw the letter in the mail from the hospital that did my MRI.  I could feel my heart immediately begin to palpitate...  Opened it up and it was GOOD!  I did the Snoopy dance.  No matter how many "goods" I get, I always have that lingering doubt in the back of my mind.

    Kara- LOL RE the Webkinz!  I know someone else talked about loading up on Webkinz cash for their daughter...was that you Cynthia??  My niece has more than TWENTY!!!!  2-0, 20, yes...  I bought one for a friend (long story), but now you make me want to keep it and play with it!!  LOL

    Ok girls...I was in the Ambien CR car last night....zzzzzzzzzzzz....it was really nice.  (Now I am wondering why I wasn't using this magic plue pill a little bit more often...)

    Happy Tuesday.

    Virginia

  • denisaquilter
    denisaquilter Member Posts: 1
    edited March 2008

    re:tamoxifen use.....I have been on it for 1 1/2 years and my largest side effect is hot flashes which interrupt or interfere with sleep and so am trying to find something that helps that...not sure if I am going to go off the tamoxifen or not....did used to have a lot of stiffness in my joints but since i am exercising much more that is gone...I know alot of people don't have side effects with tamo....but i do....didn't notice hair thinning, mine is actaully thicker after chemo....Denise

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

    Virginia,


    Thanks for the good thoughts... I am STILL too scared to call my dr. about the test results!  I am such a wimp!

    Glad you got some sleep last night.  I have used generic Ambien, but it doesn't help as well as I would like.

    Take care,

    Harley

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited March 2008

    Kara - A Webkinz car sounds like a good idea to me considering how much time I spend playing those games.  lol  It IS good for our brains - that's my story and I'm sticking to it.  I consider it important therapy.  I usually play under my daughter's sign-in which is horseyrainbow.  I really need my own Webkinz, lol.  

    Virginia -  yes, that was me.  lol  I had her up to like 40k kinzcash and in one day she spent all but 4k of it.  Guess, I'll just need to spend more time playing games.  hehehehe  Twenty? Wow!  I guess they're pretty popular from what I hear.  We're kind of behind here on the West coast, but we're catching up fast.  It was my chemo angel in MN who got us started when she sent one to my daughter.  She now has 7 in less than a year.  

    Yippee on a clear MRI!  I think we never will be completely anxiety free while waiting for test results.   

    Harley - {hugs}!  I'm so sorry you're having to deal with this.  I hope you get good news soon.   Don't worry too much...your tumor was caught very early and you even did more tx than you had to...it's probably something else...arthritis maybe?  When my onc was showing me my bone scan he pointed out that there was no sign of arthritis and he seemed surprised.  It must start younger than we realize.  Or, maybe the tech took extra x-rays because your dr asked him to check out that side more closely.  

    I got to run...my children are fighting.  Sigh!  Sorry, I couldn't comment to all of you.  I'll try later.

    Take care,

    Cynthia 

  • pattis
    pattis Member Posts: 2
    edited March 2008

    Hi Everyone!  Started Tamoxifen early January.  Unfortunately I'm riddled with severe hot flashes and night sweats.  Serious bloating and increase in "belly fat".  Trying to walk every night to combat it, but feel I'm fighting a monster.  It seems that some women have no side effects while others have mild to severe.  I'm having trouble accepting that I will be on this drug for 5 years.  My husband deserves a medal -- this is my second menopause in five years!  Coming off estrogen the second time is worse than after my hysterectomy in 2004.  Do the Tamoxifen side effects start to subside after a while?

  • pattis
    pattis Member Posts: 2
    edited March 2008

    Does the Effexor help?  I see my oncologist on the 13th and my radiation doctor suggested I ask him to prescribe a low dose to help me with the Tamoxifen SEs and the menopausal symptoms that are coming back full force.

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


    Cynthia,

    Thanks for the good thoughts.  I called my dr. and they told me that my results were in, but my dr. hasn't even looked at them yet. 

    ....sigh... 

    More waiting and worrying...  It feels like when I was dx'd, but after my biopsy, my surgeon made sure I already had an appt. for a f/u, so I didn't have to wait long for the results.

    I am scared because the technician took a bunch of pictures and then he looked at them while I sat there, waiting.  THEN, he told me that he would need MORE pics of the left side... this is why I am worried.  I guess after he looked at them, there was SOMETHING there, and so he had to get more pics to find out what it is....

    why do we have to wait so much for these freakin' test results?

    Harley

  • ashaby
    ashaby Member Posts: 200
    edited March 2008

    Hi Gals, Hooray for the good MRI Virginia. You know, Ambien CR works much better for me than the other, Harley. Give it a try.



    My shrink looked up side effects of Tamoxifen for me today on bone pain, and thar she was. My knee and hip are killing me today.



    I've been having some good talks with my son. He's in an outpatient drug program and maybe we'll see some results. Tired of being a Mom.



    XXX Basha

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

    Basha,

    My insurance forces me to get generic, so sadly, I won't be able to use Ambien CR.

    Are you saying that Tamoxifen also causes bone pain??  Maybe that is also part of what is causing my lower back pain?  I don't know...

    Thanks

    Harley

  • honeygirl
    honeygirl Member Posts: 136
    edited March 2008

    (((((((Harley))))))))) I'm so sorry you have to wait some more! And after all you have been through , you are NOT a wimp! We just hate , hate , hate waiting and getting test results. Hang in there. I will wait to hear your good news and then do a happy dance for both , you and Virginia.xx Melody

  • ashaby
    ashaby Member Posts: 200
    edited March 2008

    Harley,

    Yeah, Tamox causes bone pain even tho my surgeon doesn't believe it. But my bones tell me it's for real.



    Basha



    ps-it's so not fun waiting. it undoes me every time xxx

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

    Thanks everyone,

    I  may have my results tomorrow, but I won't call the dr. again.  If they don't call, I am going to her office anyway, because on Friday my MIL has bloodwork, and I am going with her, just until she is more comfortable with finding the office.  She went on Monday for the first time, and I rode along. 

    Honeygirl,


    Thanks!  I just HATE this waiting!!  I am hoping that they call me tomorrow, because I won't be here.   Wait!  They aren't upset and scared, waiting for ME to call back! 

    Basha,
    I have noticed that my joints ache... especially when I am in the same position for awhile.  This NEVER happened BEFORE I started taking Tamoxifen.

    Harley

  • dcbkc
    dcbkc Member Posts: 137
    edited March 2008

    Harley,

    Hang in there!  The waiting just sucks.  But maybe the tech had to take more pictures becuase he screwed up.  The techs where I have the mammos done told me that most times at least one view has to be redone because it's just not right -- their fault, not you.

    We're all crossing our fingers, toes, whatever for you. 

    Virginia,

    Glad to hear your news!  Wahoo! Glad the Ambien CR worked for you too.  At least we get sleep.

    Lynn,

    A big wahoo to the USPS too.  They finally came through for you.

    Pattis and Denise,

    Welcome to our little group that, unfortunately, needs to keep growing.  You've found a great group of ladies, if I say so myself! I've been getting joint pain for a while now and I've been on this train for 3 months. Moving does help.

    Happy Tuesday to you all! 

    D

  • JapanLynn
    JapanLynn Member Posts: 211
    edited March 2008

    Good morning, everybody--

    Harley, thinking of you as you wait for results.  I'm w/ D...when we get all flipped out by more pics, it very well could be a tech screw-up.  I don't wish arthritis on you, but it would sure be better than the alternative you fear.  Praying for you...

    Basha, Harley, Pattis, et al--why do the docs seem to want to stick their heads in the sand re: tamox SEs like bone pain?  Maybe because they feel they can't do anything about it?  Or because they think we're overreacting to pain?  Who knows...

    Basha, good luck w/ your son...hope the outpatient program goes well for him.

    Not much to report from Japan...today is weigh-in day both at school and at the base gym.  I think I'm down at least a pound; I am by the scale at home in any case.  This weight loss is so slow, but at least I'm moving in the right direction.  My goal is to be in my size 12 clothes by spring break...April 5.  I'm going to Cambodia to see the temples at Angkor Wat.  I'm really excited--I haven't been on a real sight-seeing adventure in awhile.  Recent vacations have been more of the sit-on-my-butt type, preferably by a pool, with a drink w/ a little umbrella in hand.  Decided to get this checked off my must-see list.

    Wishing everyone a pain-free, stress-free (yeah, right) day.  Virginia, how's your dad?  Take care...after my weigh-ins, I'll meet up with y'all in the bar car. :-)

    Lynn

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

    Hi everyone,

    My drs office called this morning to say that the x-ray was negative... I said "negative for WHAT?", just to be specific... 

    She said "negative for any abnormalities"...  YIPPEE!

    So, maybe the pain is also an se of Tamoxifen...  ?

    I had to celebrate today, so I went for my very first post chemo haircut!  It has been growing, albeit very slowly, but had reached the point where it looked rather... unkempt!  I also got some color! 

    The hair stylist (what are they called these days?) has been doing hair for 30 or 35 years, and has done many bc survivors' hair.  She is very nice, too.   

    If my night flashes continue, I will probably go and fill my Rx for neurontin, even though I am unsure about taking it... I don't know if any of you are feeling like... I am tired of taking so many medications!, but that is where I am right now. 

    Thanks to everyone who posted with encouraging words of kindness!

    You are a wonderful bunch of women! 

    Harley 

  • JapanLynn
    JapanLynn Member Posts: 211
    edited March 2008

    Woohoo, Harley!  So glad you got good news.  Congrats on your new haircut/color!

    Lynn

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

    Cynthia, Basha, dcbkc, Lynn, and all others,

    Thanks so much for all the encouragement. 

    I have no idea why the back pain... except... When I got my Neupogen shots, OUCH! the back pain was severe!  So, even though the drs. won't admit it, I can see where my recent back pain may be connected to the Tamoxifen.

    Thanks!  I think I will have to have a visit to the bar car later to celebrate!

    Harley

  • honeygirl
    honeygirl Member Posts: 136
    edited March 2008

    OK , here comes the happy dance for Virginia and Harley ,

    Way to go ladies! Yeah!!!!!!!!!

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

    Cynthia, Basha, dcbkc, Lynn, and all others,

    Thanks so much for all the encouragement. 

    I have no idea why the back pain... except... When I got my Neupogen shots, OUCH! the back pain was severe!  So, even though the drs. won't admit it, I can see where my recent back pain may be connected to the Tamoxifen.

    Thanks!  I think I will have to have a visit to the bar car later to celebrate!

    Harley

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.