Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...
Take Our Poll: How well do you feel your family understands your diagnosis?

Bottle o Tamoxifen

Options
12357…1024

Comments

  • catbert4209
    catbert4209 Member Posts: 122
    edited December 2007
    Options

    Barb:

    I would definitely ask your radiologist/oncologist about having an MRI.  That is standard of care down here at both MD Anderson and Baylor.  I think it has saved my life.

    All the best to you!

    Cathy 

  • catbert4209
    catbert4209 Member Posts: 122
    edited December 2007
    Options

    Cynthia:

    Well, got my path results back, and the three areas they removed are DCIS.  My surgeon and oncologist and radiologist/oncologist have all recommended mastectomy of the breast, and I am seriously considering doing a bilateral.  Not the news I wanted, but at least I can now move forward!

    I still have to find out whether I'm facing any chemo or rads, but that question will be answered when I see my oncologist next week.

    Take care!

    Cathy 

  • Barbeqrn
    Barbeqrn Member Posts: 38
    edited December 2007
    Options

    CATHY,



    I AM SOORY ABOUT YOUR PATH REPORT...BUT GLAD YOU CAN THINK ABOUT WHAT TO DO NOW.



    CYNTHIA, I GOT THE CT PRIOR RADS AS WELL...HOW LONG DO MOST PEOPLE WAIT TO MAKE SURE NOTHING "FUNKY" HAS CROPPED UP?



    I AM HAVING NO SIDE EFFECTS FROM TAMOXIFEN BUT MY ONC SAID SOME WOMEN TOLERATE IT WELL AND OTHERS HAVE A TOUGH TIME...I SURE HOPE IT IS WORKING!



    BARB

  • catbert4209
    catbert4209 Member Posts: 122
    edited December 2007
    Options

    Thanks, Barb!  Now that I've had 24 hours to think on my doing a double mastectomy, I feel very calm and sure about the decision to go ahead with it..

    I haven't had a CT scan, but I got the results from the MRI back within a week.  I'm in Houston, and the Med Center here is fabulously equipped, so we get results back fast.  When my Mom had her CT scan, it took about a week and a half to get the results.

    All the best to you!

    Cathy 

  • karol61
    karol61 Member Posts: 36
    edited December 2007
    Options

    Barb,

    If you have no side effects from Tamox, then you are one of the lucky ones.

    I had night sweats + hot flashes b-4 BC, my onc put me on Clonodine b-4 I started Tamox,and I'm really glad the night sweats +hot flashes are gone. I did have leg cramps at night but don't anymore.

    However, any of those S/E are not so bad that I'd stop taking Tamox. 

  • karol61
    karol61 Member Posts: 36
    edited December 2007
    Options

    Lynn,

    I did have hip and leg pain after starting Tamoxifen but the pain lessened after I started exercising,esp stretching. I also went to a physical therapist +he gave me some exercises. The exercises combined with Yoga stretches and relaxation breathing help a lot. 

    Karoline 

  • ashaby
    ashaby Member Posts: 200
    edited December 2007
    Options

    Hey Tamoxifriends,

    Anyone have their first mammogram yet? I have mine on Tuesday and I'm way more scared than I expected. Maybe cuz that's how my cancer was detected?



    Basha

  • honeygirl
    honeygirl Member Posts: 136
    edited December 2007
    Options

    Hi Basha , I had my 6 month follow up with my breast surgeon and he gave me one. But only in my good breast. It was fine. It was such a good feeling to hear that. They said after surgery(mast. with diep recon) that they won't mammo that one. But , when I saw him , he said they could do that one , but they didn't.

  • JapanLynn
    JapanLynn Member Posts: 211
    edited December 2007
    Options

    Good morning, ladies--

    Cathy, so sorry about your diagnosis, but it seems like you're taking the beast by the horns w/ your decision to have a bilateral, and you seem at peace with it.  Let us know when your surgery will be.

    Karoline, good advice re: my hip pain.  I actually had a fitness evaluation at the gym last week, and I've started w/ the elliptical trainer for 30 minutes.  Yoga class is this Wed., and maybe I'll get out my DVDs in the meantime.  Thanks!

    Today I have an appt. with my Japanese acupuncturist/massage therapist, so hopefully that will help my hips, too.  Has anyone else tried any alternative therapy to deal w/ tamox. SEs?  This will only be my 2nd treatment since starting the med., so stay tuned.

    Take care, all....good luck w/ your 1st mammo, Basha!  Mine is in Feb., and I know I'll be a nervous wreck.  Think good thoughts...

    Lynn

  • prayrv
    prayrv Member Posts: 362
    edited December 2007
    Options

    Good afternoon all!

    I had my first mamo (only on my good breast) and all came back clear.  Hurray!  They said see you in one year.  My bloodwork from my med onc came back and I don't need to see her until May.  My newest se on tamox seems to be bloating and abdominal pain ( like I have to go to the bathroom or cramping like I'm going to start my period ).  Does anyone else have that problem? 

    Take care

    Trish

  • my3girls
    my3girls Member Posts: 1,291
    edited December 2007
    Options

    Trish

    I have not had any of those problems.  But I wanted to say congrats on your good news!!  A clear mamo and blood work!! Something to celebrate.  I get my mamo on my good breast this month. Keeping my fingers crossed!.

    How long on tamox?

    xoxo

    Lisa

  • honeygirl
    honeygirl Member Posts: 136
    edited December 2007
    Options

    Good news Trish! I have some cramping off and on. I have been on tamox. for three months now.I also have a strange "irratation" feeling in my vagina when I urinate. But only sometimes. I go for my next pap in Jan. so I hope all is OK then.

    Good luck on your mammo Lisa!xxxx Melody

  • corvette
    corvette Member Posts: 2
    edited December 2007
    Options

    Have you ladies had the CYP2D6 test?

    It shows how well you metabolize tamoxifen. A poor metabolizer receives no benefit, can suffer toxic build up - intermediate needs a dose adnjustment or suffer toxic side effects - then a high metabolizer receives no benefits either.

    It's a blood test. Simple - runs around $600 if your insurance won't pay for it.

  • my3girls
    my3girls Member Posts: 1,291
    edited December 2007
    Options

    I have not had that yet.  I have been on for 6 weeks.  I don't see my oc till February.  When do they usually administer that test?

  • honeygirl
    honeygirl Member Posts: 136
    edited December 2007
    Options

    corvette , I asked my onc about it. He said they don't do it as  a routine test. That given I am having horrible hot flashes , it appears to be doing its job. I can't afford to pay it on my own. I am hoping , soon , my insurance will reconize the need for it , or I'll win the lottery. Which ever comes first!

  • ashaby
    ashaby Member Posts: 200
    edited December 2007
    Options

    Hi Layne,

    I seem to have lost a post re mammograms. Did you have 1 yet post everything? I'm so dang nervous even the thought of chocolate doesn't distract.

    It's on Tuesday.

    xxBasha

  • awb
    awb Member Posts: 213
    edited December 2007
    Options

    corvette---I've been on tamoxifen for over 4 years and my oncologist has never mentioned this test; I"ve only heard about it recently on this board. I'm wondering where the information is coming from about how a person metabolizes tamox? and also haven't heard of any build up of "toxic effects"? (unless you are referring to the very low risk of endometrial cancer which is less than 1%)

  • Harley44
    Harley44 Member Posts: 2,126
    edited December 2007
    Options

    My onc said that there is no need for the test, since if you do not have hot flashes, it isn't working. 


    I have had "maybe" mild hot flashes since starting Tamoxifen, but the weather was warm, too, so I am not really sure...

    Harley

  • nativemainer
    nativemainer Member Posts: 7,802
    edited December 2007
    Options

    The rads onc I saw said absolutely no way I could take tamoxifen while getting rads.  He said tamoxifen "puts the cancer cells to sleep" and rads don't affect "sleeping" bc cells.  Of course, this is the same jerk dr that told me truncal lymphedema couldn't be treated and I needed to learn to live with the pain, so who knows if he actually knows anything or not. 

  • laphd
    laphd Member Posts: 1
    edited December 2007
    Options

    Hello everyone -- it feels great to finally find some people who "get" the challenge of this this life issue!   I was diax exactly one year ago with a mini-tumor, found accidentally by my ob/gyn when I showed up for another problem...vigilant for years with mammograms - but bad family history, and 20 years on Premarin (after complete hysterectomy) caught up with me.  Lumpectomy last December, Chemo (Taxotere) followed by radiation, which ended late June.  Next, Tamoxifen, begun early August.  Chosen both to ward off bone density issues and to preserve vaginal health. 
    Though there were occasional moments of rather unexpected warmth last winter and spring, usually whenever there was a change in the air vent (whether it came in cold or warm, my system would react with a "flush") it really got noticeably awful after the Tamoxifen started. Only an occasional night sweat - but again, I think this is from times when the heating/ac changes.  Am keeping the house much colder and dressing in layers.  Never was a tank top person, now I am, so I can be prepared to strip with immediacy.  At a theater last night, on/off, on/off, with the outer wrap, while I noticed those around me with their woolen turtlenecks, shawls, leather jackets, quite comfortable.

    At a fancy party the  night before I was running outdoors every 15 minutes to cool off, though wearing hardly anything.  I got a glass of ice, and found popping a bit into my mouth, or rubbing the back of my neck brought momentary relief.

    At this rate, I worry I will just give myself pneumonia.a 

    I have been told to get used to it but after reading what some of you have reported, I am going to ask my dr this week about an anti-depressant.
    I know everyone's system is wired differently - my thermostat has always been very reactive, first to get  cold, first to get hot, life-long.  I read an article a few months ago that did indicate those with this kind of internal thermostat were most likely to have issues with hot flashes.

    Good luck to us all!

    Jaye

  • ashaby
    ashaby Member Posts: 200
    edited December 2007
    Options

    Hi Honeygirl,

    Thanks for the positive comment re mammograms. My DCIS got diagnosed 9 months ago via mammo and it feels like deja vu all over again.



    Layne, Thanks for the((((())))). By tomorrow it will be over and I can obsess about something more fun.



    XXX Basha

  • honeygirl
    honeygirl Member Posts: 136
    edited December 2007
    Options

    Hi everyone , I hope everyone is having a good start of the week.

    Good luck tomorrow Basha! Sending lots of positive vibes your way. I'll be thinkin' about you tomorrow. I was pretty calm until it was over and they had me wait for my results. It started feeling like it was taking forever and thoughts started creeping in that maybe something was wrong. But it was all good and I hope the same for you. Your in my prayers.xxxx

    You know what I am having trouble with? Self breast exam. I use to do it all the time. In the shower , in bed etc... I think I am so afraid of finding something , I rush through it like a guy getting his first feel!lol Hopefully , It will get better in time...

    Hi Jaye , Welcome. Boy , you sound just like me. I sure hope this effexor kicks in soon. I hate hotflashes! I get the night sweats also. I'm so glad winter is here. I didn't think I'd ever say that!lol

     Hi Layne , aren't piggies wonderful. I would love to have an "Arnold" in my yard. That sounds sooo cute. I'm 50 too , and have joint pain in the knee and hip area. Good luck with the colesterol. I hope your liver counts come down. I plan on a strick diet and exersise program for New Years. Good luck to all of us.

  • yellowrose
    yellowrose Member Posts: 181
    edited September 2010
    Options

    I -

  • my3girls
    my3girls Member Posts: 1,291
    edited December 2007
    Options

    txgirl...I think it is wise to take your time before you make that decision.  I think sometimes, things are thrown at us, and we hurry and decide, because we think it's the best.  Don't worry about ranting...that's why we are here.  Good luck with your tests next week.

    Well...Melody..I am there with you with the self exams.  Difference is..I never did them..and I am still not doing them.  I am not even sure the correct way..haha.  Bad..I know..I am bad!  I have to get a grip on that!  Heck...I only have one boob to check!  That is a question..after reconstruction...do you have to check that boob as well?

    Have a good day everyone!

    xoxo

    Lisa

  • karol61
    karol61 Member Posts: 36
    edited December 2007
    Options

    Prayrv 

    Congrats on your mammogram that had no BC. You're NED or No evidence of Disease. As for bloating and cramping, I get it sometimes at the end of the day. In my case, it is worse on Tamoxifen, and usually caused by not drinking enough water. 

    Karoline 

  • conniehar
    conniehar Member Posts: 585
    edited December 2007
    Options

    Hi Tamoxifen girls - I posted on this thread in the beginning, but haven't been back.  It looks like a fun group of ladies, so I'll check back often.

    I am almost done with my first bottle - 5 more pills to go.  I laughed at whoever posted 59 more bottles to go!

    So, far I seem to only have the hot flashes that I started during chemo.  They seem to be a little worse at night, but not unbearable.  I have also been tired this week, but I am also going through radiation so it is probably from that.

    Someone asked about getting your period back after chemo.  My onc told me about a lady he saw a few weeks ago my age (40) who got hers back 9 months later - she was also on Tamox.  But, he seems to think it's more likely for me that it won't come back.  It has been nice to not have to deal with it, but this lack of hormones does suck in many ways!

    I go for my first mammogram (on my one remaining boob) since dx next week.  Our hospital just got a digital mammogram machine so I am one of the first to try it out.

    Have a great day ladies!

  • Harley44
    Harley44 Member Posts: 2,126
    edited December 2007
    Options

    Connie,

    March 8th 2007 is when I had my diagnostic mammogram & u/s, that found the tumor.

    Wow!  You have been taking Tamoxifen for ONE or THREE months?  I have been taking Tamox. for 3 weeks, almost a month.  In the evening, I usually have some very WARM moments, very uncomfortable! 

    Good Luck with your mammogram!

    Harley

  • honeygirl
    honeygirl Member Posts: 136
    edited December 2007
    Options

    Hi Connie , good luck with the mammo! I had my period like clock work during my chemo. I started tamox. in sept and my last period was Aug. So , like you I don't miss it , but dealing with the hormone problems suck! I am one of those with really bad hotflashes. Night sweats too.

    taxgirl , yes , take your time deciding. I felt so rushed through out this journey , I wish now I would have taken more time to think. Good luck.

    Hey lisa! Your gyn can help show you how to give yourself an exam.You can do it!

    Hugs ladies.xxxx Melody

  • honeygirl
    honeygirl Member Posts: 136
    edited December 2007
    Options

    Basha , thinking of you and wondering how it went. Let us know. hugs. Melody

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited December 2007
    Options

    So, I woke up with the flu or a cold this morning.  I had the chills, aches, and was coughing up icky stuff.  I still went to my onc appt to have my port flushed, then to Trader Joe's for some essentials since I was already in town.  When I got home, I took some Darvocet and advil and rested while my mom took care of my kids.  The chills are gone, although I am wrapped in a blanket but that's not all that unusual for me.  If I'm not having a hot flash, I'm usually cold.  lol  This is the first time I've been sick since my dx and I'm a little nervous because I know my white counts probably haven't recovered, yet. 

    Basha - I hope your mammo went well.  I had my yearly mammo a few weeks ago.  It's hard not to be nervous, I think.   I was even more nervous about the CT Scan, but in the end they were all normal.  I have my doubts, though, about the benefit of the mammo since my breasts are so dense.  

    txgrl01 - sorry to hear about your problem with Tamoxifen.  Feel free to vent anytime you want.  

    Take care all!

    Cynthia 

Categories

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