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Bottle o Tamoxifen

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Comments

  • valgal
    valgal Member Posts: 187
    edited January 2011

    Dear AWB,

    Thanks for the response Anne. What's a TAH and a BSO?  I'm making an appointment with the gyny tomorrow, so I can monitor the uterine wall thicknesss. I already had one ovary and tubes removed on one side, but I feel like something is going on on the other. Oh, Yell the joys of  BC and the Biig T.

  • codavis
    codavis Member Posts: 48
    edited January 2011

    This thread moves fast..

    To answer the earlier question about Effexor. I have had increasingly horrible hot flashes since last summer (about 3 months into my 6 month chemo regimen). I tried 37.5 mg Effexor for a month when I started Tamoxifen with no impact on my hot flashes--they were just as bad so my onc doubled the dose. It's been two weeks and the hot flashes are still bad, but they are more tolerable--as long as I have a fan nearby. I was worried about the side effects of taking both drugs, but they haven't been bad. No nausea to speak of. A little bit of blurry vision, but I've been due for an eye exam for the past year. If it weren't for the hot flashes, it wouldn't be too bad. 

  • jo1955
    jo1955 Member Posts: 7,545
    edited January 2011

    Jules - Hope your trip to Vegas was for fun.  As for the lady asking questions, that is what she gets for being nosey.  Bet is was an uncomfortable flight for her having to sit next to you.  What's up with the Tamox that you hate it so?  I must have missed something along with way.  Sorry to hear you are having problems with it.

    (((HUGS))) 

  • Alaina
    Alaina Member Posts: 153
    edited January 2011

    When I asked my onc why I got breast cancer, he looked at me and said "Sh*t happens..."

    In the nearly 2 years since my diagnosis, having asked that question of medical and non-medical folks alike, his is the most honest answer I've gotten.

    I'm going with that. :-)

    Alaina

  • jo1955
    jo1955 Member Posts: 7,545
    edited January 2011
    Alaina - I like you onc's answer to your question - that is about as honest as it gets.
  • swanseagirl
    swanseagirl Member Posts: 171
    edited January 2011

    Alaina, great answer.

    Jo, the Tamox is just getting me down. I throw up at least once a day, I'm nauseated, bloated, constipated. Wow, that sounds like a song. The hot flashes are the worse.  My body feels old. I'm not sure what I expected, but it wasn't this. I'm not sure if this journey is now starting to hit me.

    I read a thread earlier and I am going to take half Tamox in morning and the rest at night to see if these will help with se's.

    OK less of the drama queen.

    Vegas was fantastic!!!!!!!!!!!!!!! Now looking forward to my trip back home to Wales.

    Jules

  • tinkertude
    tinkertude Member Posts: 1,998
    edited January 2011

    Yes great answer Alaina...

    Swanseagirl...... so sorry you are having a rough time with the se.. Splitting the dose helped me quite a bit with the issues I were having I have new ones but not like before... i hope this works for you as well... sending you hugs...Glad you had a great time in Vegas though :).... happy thoughts for your next trip. We are planning on going to the beach in June and I am counting down already, will make up for being practically immobile last summer after surgeries....

  • jo1955
    jo1955 Member Posts: 7,545
    edited January 2011

    Jules - You are not being a drama queen - this is the place to let it all out - let us know how you feel. I take the split dose and it seems to be working for me - just a little bit of nausea and even that is going away.  I am sooo sorry to hear you are having such a tough time with it.  Please keep us posted.

    So glad you had a good time in Vegas 

    (((HUGS)))

    Jo 

  • phxsunshine
    phxsunshine Member Posts: 156
    edited January 2011
    Alaina - Thanks for sharing that awesome quote from your Onc.  Just cracked me up.  Oh, Jules, that ain't right, ugh, so sorry you are having such a stinky bunch of SE's.  My prayers are with you.
  • June2268
    June2268 Member Posts: 926
    edited January 2011

    Beach....what I wouldn't do to be sitting on a beach right now and sipping from a drink much like the one Aliana is holding.....LOL

    Swanseagirl some people just seem to have it really bad with tamox and others like myself not at all..... I would try and take it 2x a day and if that is not working you really need to talk to your onc as I could not live like that and I was soooooo afraid of that happening as I heard so many horror stories.......sending you hugs and hopefully you can find a solution.....

  • didel
    didel Member Posts: 733
    edited January 2011

    Jules first I have to say I would've NOT been as nice as you to the nosey busy body on the plane. Bless you for your restraint. I have a lot of constipation, bloat and ovary pain too, My onc told me to take ..this is embarrassing..GAS X daily..you know just add it to the list of supplements and rx pills. It seems to help some days but some days there is no helping the bloat. There was a stomach bug going around and I prayed I got it!! I have been constipated since my first chemo! I feel like things are getting a little better this week and I go the gyn Monday to check my ovaries. My onc says once your body adjust those se's will go away. I HOPE for all our sakes. Yes 5 years of terrible gas and constipation is a bit much.

    Diane

  • surfette
    surfette Member Posts: 108
    edited January 2011

    Wow, I would say if you are vomiting like that you might be having an allergic reaction and to call your doctor ASAP. Not to concern you but I haven't heard of that side effect.

  • bcincolorado
    bcincolorado Member Posts: 4,758
    edited January 2011

    Nausea is definitly a SE of Tamox.  There is a great chart here on this site that shows all the SE for all the hormal meds.  You can find it here:  http://www.breastcancer.org/treatment/hormonal/comp_chart.jsp

    My onco suggested splitting my dose because of SE.  If it bothers you taking in the morning you might want to try taking it all at night so maybe you can sleep through the nausea.

  • sabregirl10
    sabregirl10 Member Posts: 4
    edited January 2011

    A TAH is a total Abdominal hysterectomy and the BSO part is the removal of the ovaries and tubes. I still have 1 ovary  but got rid of uterus, tubes, cervix and 1 ovary. I didn't realize how bad I felt until I felt so good after the hysterectomy.

     I called my onc to ask if I should come in before next week. Still waing to hear. It's almost like I developed exzema over night. The rash is bright red to start but then 2 days later it's all scaley feeling and stings. Strange.

  • surfette
    surfette Member Posts: 108
    edited January 2011

    bcincolorado, thanks for the link. Aside from the obvious serious side effects like cancer, stroke, etc. I am most disturbed about thinning hair. My hair is thin enough already. I wonder if there is a way to counteract this. I.e. if you could find out what specifically in the medication causes this and counteract it with supplements, etc.

  • jo1955
    jo1955 Member Posts: 7,545
    edited January 2011
  • chabba
    chabba Member Posts: 3,600
    edited January 2011

    surfette, a month or so ago someone here suggested taking biotin for hair loss and soft or tearing nails.  so far it seems to be helping.

  • phew
    phew Member Posts: 143
    edited January 2011

    ALAINA:   that bour sys t all, eh? such an epophany!  one when i had one of my brain surgeries, a similart thing happened.  my dad a=mentionedthat , his answe:  sometimes bad things happen to good people.  what else can you say?

  • surfette
    surfette Member Posts: 108
    edited January 2011

    I've been on biotin for years, doesn't seem to be helping much but thanks.

  • sptmm62
    sptmm62 Member Posts: 527
    edited January 2011

    Alaina:  That's kind of the way I look at it.  No need to blame myself or anything I did/ate/drank/used, it just happened.  Bad luck I guess! I like that doctor.  After my first round of chemo I got the "period from hell", lasted almost two weeks, really heavy.  When I asked my onco about it, his response was "chemo really rocks the ovaries".  Great medical explanation!!

    Jules:  So sorry you are having a tough time with the Tamox.  But I have to tell you regarding the joint pain, I am still having joint pain from the chemo.  I asked the onco about it yesterday and he said it could last up to six months after your last round. He also said that patients under 50 tend to have the hardest time with lingering pain.  I swear there are days where I get out of my chair and feel like a creaky 100-year-old woman! He also said that my side effects on Tamox will fade as my body gets used to the medication.  Hope that is true for you.

    As for me, I took my first Tamox yesterday morning.  I survived the day with no visible side effects, however, I had the worst nights sleep ever last night.  I slept better on the steroids! And this morning I have a massive headache, probably from the lack of sleep.  Is this a side effect of the Tamox?  Well, I have to go sleep, I mean work, at my desk now so I will catch up with you guys later.

    Debbi

  • Alaina
    Alaina Member Posts: 153
    edited January 2011

    My onc's answer freed me from a lifetime of worry and the prison of eating/doing things I really didn't want to eat/do.

    There are too many skinny, vegan/vegetarian, non-smoking, vitamin-taking, marathon-running women with breast cancer, just like me.

    Now that doesn't mean I'm going to permit myself to put on unnecessary weight, eat a cow daily, start smoking, or stop taking supplements I know to be beneficial.

    I knew way before my diagnosis that I needed to exercise more and get more fit.  I knew way before my diagnosis that I needed to eat better in some respects (more veggies).

    So now, thank God, I have the opportunity to make reasonable lifestyle changes.  I get to do as my 2011 Motto says, "Begin Again!"

    But even with those reasonable changes (better food choices, move more), I'm realistic about the fact that the last time I checked, there was no CURE for breast cancer.  The fear and statistical likelihood of recurrence is there; LOW, but always there, riding side-saddle to my faith that tells me, while there is no CURE, I am already and will forever remain HEALED of this disease, no matter WHAT happens tomorrow, or the next day, or in the next years/decades.

    So when I want some chocolate, or a glass of wine (or a mimosa, like in my pic), or a beautifully marbled ("fatty") piece of steak, I get it!  With NO regrets!

    In 2010, I lost 4 loved ones, all under the age of 50 (29, 36, 42, and 47), all seemingly healthy.  One died in childbirth (the 29 year old), one died in a motorcycle accident, one had a pulmonary embolism, and the other died in her sleep (still not sure of the cause of death).

    Tomorrow is not promised to ANY of us!  Therefore, I've decided not to live the life I have, however long/short it may be, in total fear, or by making unsustainable joyless lifestyle changes that may or may not have a positive effect on my survival.

    My biggest challenge right now is to find a reasonable non-soy substitute for tofu.  Someone suggested seitan to me, and I will look into that.  But if you know of anything else, holla at a sista! :-)

    Until then, ride this TamoxiTrain with the joy of knowing that we are a subset of the lucky ones, who have something shown to increase our survival, even if it tries to make us chubby and sweaty along the way!

    Alaina

  • tinkertude
    tinkertude Member Posts: 1,998
    edited January 2011

    Alaina, you are so right and have a great attitude, you inspired me today!... One of those Tamoxifen blues days and reading your post gave me some inspiration... thanks!!!! I too look at this as a "Begin again" attitude... a second chance so to speak. I was only 41 when diagnosed and all the why me"s I went through but then I think why not??? There are women so much younger than me that have gone through and are going through so much more with bc. The reason why isnt as important and where do we go forom here.......thanks for your wise words...

    So sorry about all your losses how devastating...you sound like a strong lady!

    So our new normal begins!!! :) I figure my goal is to try and make it a positive and just be better than before whatever that means...lol....

    Have a great day!!!

    Maria

  • surfette
    surfette Member Posts: 108
    edited January 2011

    Hi Alaina,

    I am one of those skinny, vegetarian, non-smoking, vitamin-taking, marathon-running women who got breast cancer. It doesn't run in my family, I never really took the Pill, and aside from never having children, I don't have any risk factors. I like the "shit happens" explanation, and like you I refuse to give up the things I like especially when I know it's probably not going to make a difference anyway.

    My surgeon did, however, tell me that my cancer was 100% curable. His view is once the cancer is removed, you are cured, and I like his way of thinking. If it comes back, we'll cross that bridge when we come to it.

  • tinkertude
    tinkertude Member Posts: 1,998
    edited January 2011

    surfette I want your doc lol.... my surgeon and onc said we NEVER say cured we say remission. I like that positive cured attitude much better!!!!!!

    This board is soo encouraging, so glad I found it!

  • June2268
    June2268 Member Posts: 926
    edited January 2011

    Alaina I agree with Tinkertude about your attitude......totally inspiring and we should all think like that going forward and live life to the fullest as we have no idea what God's plan is for us......as for all your losses I too am sorry to had to go through so much pain and lose so many people you loved!  You are one strong lady Alaina. 

     Well I am going to try and do some Wii exercises, will chat with you ladies later.....

  • swanseagirl
    swanseagirl Member Posts: 171
    edited January 2011

    Surfette, sure wish I had your Dr.

    Alaina, reading your thread today gave me the kick up the ass I needed. Thanks!

    I've been too busy focusing on the bad days and not the good days.

    I've broken the Tamox in half. I do not feel as nauseated, so fingers crossed. I did put a call into my onc to clear up some of the se's. 

    Debbi thanks, saw my P/T yesterday and she said she has seen some of her patients have joint pain for two years. Rare, but it does happen. Yikes

    Tinker, I think we all deserve a vacation on the beach. Sun, sand, cocktails and plenty of laughs.

    Today I am going to brush off of the Tamox blues, grab a coffee and take a walk and stop and smell the roses.

    You girls ROCK!!!!!!!!!!!!!!!!!!!!

    Jules

  • surfette
    surfette Member Posts: 108
    edited January 2011

    The way I see it what good is it telling someone they will never be cured and at best can hope for remission? Who needs that kind of negative thinking? Doctors are not doing anyone a favor by being all doom and gloom.

  • janet in virginia
    janet in virginia Member Posts: 923
    edited January 2011

    Agree!  Just because we're on this train for a while, doesn't mean we have to stop living!

  • Pennythoughts
    Pennythoughts Member Posts: 36
    edited January 2011

    Here's one I don't think I've read posted before, and I honestly can't think of anything else it can be except the Tamoxifen, but my taste buds have gone wonky in the last week or two.  I mean, either I can't taste anything - it's all bland, or I get a really weird aftertaste in my mouth all the time.  For a couple of days, I tasted sweet all day long in my mouth, and all of a sudden, it's switched to a bad/rotten taste that is constantly there.  Am I going nuts???

  • jo1955
    jo1955 Member Posts: 7,545
    edited January 2011
    Janet - Love the train picture!

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