Come join others currently navigating treatment in our weekly Virtual Support Groups! See times and register here.

Bottle o Tamoxifen

16536546566586591022

Comments

  • MissAngie
    MissAngie Posts: 12
    edited June 2012

    Thank you Jo, Purple, Paula, Sherry and Momx3.  I think I just needed for someone to tell me that getting depressed this far from my surgery and radiation is probably normal.  I really did think that I was doing well dealing with depression that I used to have.  For now, I am going to mostly blame it on the Tami.  I really was feeling good after radiation, now its the polar opposite.  Thanks for your advise.  I'll talk to my doctor about it.

    As for the hair loss, I am taking BioSil drops twice a day.  It pretty much stopped the hair loss right away.  Thanks for the tip on Biotin.

    For all of you that have tests this week, I will join some of the other ladies for your pocket party Laughing

    For all of you dealing with side effects, I hope you feel better this week!

  • bgirl
    bgirl Posts: 435
    edited June 2012

    Miss Angie - glad you are going to talk to your doctor.  Doing what you need to cope is important.

    Just came back from MO, seems very happy with cancer stuff.  But he does want me to see my PCP and get a referal to a gyn.  Need to check out endometrial hyperplasia and ovarian cyst. Ugh!  Also wants me to talk to her again to see if there is something else that would help me get more sleep.  Doesn't feel 1- 5 hrs a night is enough.

    Hope everyone else's apts go well this week.

  • tinkertude
    tinkertude Posts: 1,998
    edited June 2012

    Miss Angie... welcome... yes I alsohave horrible mood issues with the Tam. My onc did prescribe efferxor but I have yet to try it. Just sooo pill shy and chicken. The girls are right though talk to your MO and see what they can do to help. We are here for whatever you need!

    Tappy.. so glad to hear you have adjusted to the effexor

    Sherry... how are you feeling??

    Jo.. will be there for your pocket party of course!

    all my Tammy sista"s.. hugs!

    Maria

  • jo1955
    jo1955 Posts: 7,545
    edited June 2012

    Tink - I figured you were getting out the extra wings.  Some may need a ride.  Glad this is a once a year appt.  Get this one over with and I am done with doctors for 6 weeks.  

  • charmainejensenvoisine
    edited June 2012

    Are you ladies aware that one of the most severe side effects of being on Tamoxifen is:

    blood clots (deep vein thrombosis) and pulmonary embolism.

    When I first started Tamoxifen I was 'never' informed of this.

    I started to have problems with my left leg at the beginning of April and I thought it was just edema with the swelling and redness. BUT towards the third week it got really red and tightness in my left leg from the knee down to the ankle. I also in the third week started to experience chest pains on the right side....  then finally on April 29th I woke up around 8:30-9:00 and I literally could not breath - and the pains in my chest going into my back and my lungs - the pain was so unbareable and I was losing my breath with each moment. Husband called the EMS and I was rushed to the hospital....

    As it turned out I had a bilateral pulmonary embolism (this is in both lungs). A dobular was done on my left leg and it turned out that I had a blood clot behind my left knee.... the leg was at least 3 times the size of my right leg.

    I spent 2 weeks in intensive on oxygen and a heart monitor and then 2 weeks in rehab in the same hospital... (oh right lung collapsed after a couple days in the hospital). I am very lucky to be alive - nearly did not make it twice.

    I just saw my medical oncologist last Thursday and she told me it was the Tamoxifen that caused the blood clot and pulmonary embolism.

    As a result of the blood clot I am on Warfarin/coumadin. Originally it was decided that I would be on it for 6 months. BUT after seeing my Medical Oncologist she wants me to remain on the Warfarin for the duration of the time I have left on the tamoxifen which is until March 2015...

    Just thought I would bring this to all of your attention for those that were not aware of this - ----

    So be on your guard and watch for the possibility of any blood clots - if you think you might have one go immediately to the emerge or your family MD ..... before it passes through your blood stream and causes an embolism or worse a stroke!

    Charmaine

  • jo1955
    jo1955 Posts: 7,545
    edited June 2012

    Charmaine - Thanks so much for the info. That is one thing I did not know.  

    We have to beg the question - Why don't our MOs tell us about stuff like that?  Afraid we will not take Tamoxifen? 

  • MissAngie
    MissAngie Posts: 12
    edited June 2012

    Thank you Tinker!  Ever since my BC diagnosis I have been shy to take anything beyond Tylenol.  I justed to pop Tylenol and Advil like they were smarties (had major menstrual migraines).  I am sure my liver was doing a happy dance when I didn't take them anymore.

    Charmaine - I am so sorry to hear what you have been through.  I was told my my RO and pharmacist that Tami can cause blood clots and a pulmonary embolism. I was given 5 pages of information about Tamoxifen by the pharmacist that explains what it does, how to take it, meds that make it less effective.  Side effects are also listed along with how to manage them. It also stresses to see your doctor or get emergency help - at signs of a stroke, at signs of blood clot and allergic reaction. 

    Here is the link to the information -  http://www.bccancer.bc.ca/HPI/DrugDatabase/DrugIndexPt/Tamoxifen.htm

  • 1openheart
    1openheart Posts: 250
    edited June 2012

    I was told that the risk of blood clots is about the same risk as being on birth control pills.   But, the risk of blood clots and stroke are listed as side effects of tamoxefin.

    I hope you all are having a good evening.  I just got in from my favorite yoga class and having a little dinner with a glass of red.  Nice. 

  • June2268
    June2268 Posts: 926
    edited June 2012

    Missangie ~ Welcome!  So sorry you are having such a hard time on Tamox.  I know everyone is different in the way the drug reacts with them and I do believe that time can change the way you feel.  I am now on a 3 month break as my SE were worse after a full year on the meds and during year 2 I had stomach issues that wouldn't go away.  Not sure I want to go back as being off the pill I am finally getting relief and feel back to my old self.  I am like you and hate to take more drugs that is why I would try and wait a little longer if you can bear to as this SE just might disappear.  Keep us posted as to what you decide.

    Sorry girls I have been away for the past couple of days as today is the 1 year anniversary of my Dads death and with Fathers day yesterday I just needed time to be process all that has happened this past year.  I went with my kids to his grave yard yesterday and saw some of my family which made it even harder if that is even possible......

    Love ya ladies and hope your all behaving, especially Paula......ha ha ha JK!!

  • jo1955
    jo1955 Posts: 7,545
    edited June 2012

    June - Aw sweetie!  I know this must be a very hard time for you.  Just know that we are all here for you.  I have just what you need:

                                  

  • 1openheart
    1openheart Posts: 250
    edited June 2012

    June...so sorry for your loss.  I know that yesterday must have been hard.  Take care.

  • chachamom
    chachamom Posts: 410
    edited June 2012

    Wow Charmaine...sorry you went through that!......there are so many potential SE's that it makes it difficult to know the actual risk vs benefit of any treatment. Even when they say it's a small risk....if you are one of the unlucky ones, its 100% bad!



    Openheart: I like your compatible treatment!



    ((((June))). I miss my dad too.....hugs!

  • odie16
    odie16 Posts: 1,415
    edited June 2012

    June ..... (( HUGS ))   - totally understand as last month was the 3rd mothers day without my mom. Wish I could say they get easier or suck less but not sure that it true... 

    Welcome to the newbies. lHope everyone is doing well.  I am keeping busy at work but think of you ladies often. 

  • tinkertude
    tinkertude Posts: 1,998
    edited June 2012

    Junie... great big hugs love you!

    Charmaine... so sorry you had to go trhough all that. Glad that you are healing

    Jo... extra wings ready to go!!!!

  • charmainejensenvoisine
    edited June 2012

    Miss Angie thank you for the link am going to check it out!

  • Paula66
    Paula66 Posts: 1,572
    edited June 2012

    Morning all!  And yes June I am behaving, lol!

    I survived the trans vag us.  It wasn't as bad as the first time, but with that being said its still not my favorite thing to do.  The gal who did it was alot easier on me then the last one.  

    I know that I take a baby aspirin everyday just for the clotting issues.  This was one of the SE that my Onc had told me about.  I still find it strange how info differs from one Onc to another.  She laid out all the same info to me that the pharmacist did. I do know that the SE did scare the crap outa me but I had to put a lot of that fear aside becausein the end I wanted to make for sure that I did whatever it took to keep this under control.

    Well all I broke down and turn the AC on ugh!  I can't stand the closed in feeling and am in an office all day so its nice to have the windows open and hear the birdies chirpping.  Other then the hf I'm a hot weather gal and it doesn't bother me to bad.  But the hubby works in it so he needs a break.

    Well all its time for me to get going and start the day!  Love and light to you all!!!!!  Love ya my Sistas!  Enjoy the day!

    (((((((June)))))))) heres a great big hug for you!

  • bgirl
    bgirl Posts: 435
    edited June 2012

    Hugs June - hope you got some extras from your kids.

  • Sherryc
    Sherryc Posts: 4,503
    edited June 2012

    June I was missing my step dad this year too.  Had to change up father's day this year for me.  told DH I just was not in a festive mood.  I feel like I am 50 and have lost two Dad's that were both very special to me.

    Charmain--so sorry you had to go through all of that.  Sandee that pops in from time to time had a heart attach after being on tammi from a blood clot.  My first MO did not say anything about those issue but after three months I switched MO's and my new one put me on baby aspring because of my family history of heart disease and told me the risk.

    Paula glad your US went ok

    Well today is my birthday.  I have been telling everyone it is my first anniversary of my 49th birthday. LOL.  I just don't feel 50

  • tinkertude
    tinkertude Posts: 1,998
    edited June 2012

    Hope you have a wonderful day Sherry!!! lots of birthday love and hugs!!!!!

    Paula... glad thats over with for you sista!!! hugs

    Love and hugs to all my sistas today!!!!

    xo

    Maria

  • jo1955
    jo1955 Posts: 7,545
    edited June 2012

     Sherry,      

                               

  • June2268
    June2268 Posts: 926
    edited June 2012

    Happy Birthday Sexy Man

    I know I am no Paula, but Happy birthday Sherry!!!

  • chachamom
    chachamom Posts: 410
    edited June 2012

    OMG, June! Blush, blush! I think you are a contender with Paula!

  • Sherryc
    Sherryc Posts: 4,503
    edited November 2013


    Jo thanks for the balloons.

  • jo1955
    jo1955 Posts: 7,545
    edited June 2012
    June - OMG!  You must be taking lessons from Paula.  Do you think you can russle up one of those for my pocket party tomorrow?  I will definitely make room for him.
  • chabba
    chabba Posts: 3,600
    edited June 2012

    How is this jo? Some male cleavage for a change. 

  • purple32
    purple32 Posts: 1,767
    edited June 2012

    Charmaine.



    So sorry! I just got my ki67 scoreand it was. Less than 5% . I seriously thinking of skipping. TRamoxifen. Pm any replies. Limited access. For 1 week. Thx.







  • Sherryc
    Sherryc Posts: 4,503
    edited November 2013

    chabba male cleavage is looking pretty good

  • 1openheart
    1openheart Posts: 250
    edited June 2012

    June...you must think all of us Texas girls like cowboys!  

    Man cleavage! Yea! 

  • chabba
    chabba Posts: 3,600
    edited June 2012
    As long as it is in this kind of shape, yeah!  Now "plumber's butt" is something alse however.  Wink
  • 1openheart
    1openheart Posts: 250
    edited June 2012

    Noooooooooo plumbers crack!!!