Bottle 'o Tamoxifen

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  • Valgal
    Valgal Member Posts: 247
    edited April 2011

    Sandee: I PM'd you!

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  • jo1955
    jo1955 Member Posts: 8,543
    edited April 2011

    Sherry - It really sucks when you can't get to sleep and stay asleep.  I go to bed at 10:00pm and toss and turn until sometimes after midnight.  Then I am up every 2 hours to go to the bathroom.  So I know what you are going through.  Some how I manage to make it through work the next day but do desperately want a nap in the middle of the afternoon.  Even though I don't want to add another pill to what I am already taking, I may have to give in and try the Melatonin.  You may also want to give it a try and maybe be able to get off the sleeping pills.  

    My question for those of you who take Melatonin and it is working - how much do you take and how soon before bedtime do you take it?  At this point, I will give anything a try. 

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  • GirlFriday
    GirlFriday Member Posts: 461
    edited April 2011

    Sandee:  I'm not sure if this will help, but I look at your numbers and your concerns and I think about it this way.  You had a <1cm tumor.  You found it. You destroyed it.  You've moved forward.  Now you know that you have a possibility of developing cancer again.  So you're doing things like Tammi to minimize that.  Tammi works because it binds with the ER+ tumor cells so the estrogen can't tell the tumor cells to divide and multiply.  If you look at your numbers Stage 1Grade 2,  no nodes effected, and the fact that you've killed any cancer in your body, Tammi is just a safeguard.  Right now you have a heart issue.  Heal your heart.  Worry about recurrent cancer later.  If it takes 3-4+ months to heal your heart and get you to baseline, and just say that a pesky BC cell comes back just before you start Tammi again, once you begin Tammi, it will not allow it to divide and will encourage that stupid cells death, before it even registers on a mammo.  Now I don't mean in any way to diminish the weight of your "numbers" because I spend a part of every day thinking about my numbers as they will relate to the rest of my life.  What I do mean to say is...your numbers are manageable to you, because you've already done it once.  You've been pinked and you've conquered.  A couple months off of Tammi to heal your heart is just going to make you stronger, it's not going to re-pink you!  Believe in that.  Believe in what  you've already accomplished...don't let the nagging idea of pink eat away you.  You've got much more important things to worry about now.  Tammi's the icing on the cake that you get to eat when you've healed your heart. 

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited April 2011

    LInda thanks for the info.  How long does the melatonan take to work?  Does it have to be in your system a while???

    Jo--I am going to give it a try.  I would rather take the melatonan than a sleeping pill

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  • Linda_M
    Linda_M Member Posts: 68
    edited April 2011

    Sherry and Jo...

    Re Melatonin, I am taking a 3mg dose.  I saw a 1mg, and a 5mg as well (the 3mg is what my friend gave me to try so I stuck with it).  During the work week I take it at 10:00 when I go to bed--I have yet to see 11:00 on the nights I've taken it.  I think it says to take it 30 minutes before going to bed, but usually I'm too lazy to walk upstairs to take it. 

    Sherry, it started working almost immediately for me. I honestly feel like it has been a God send...

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  • AnnieBear
    AnnieBear Member Posts: 96
    edited April 2011

    This is amazing - I tried Tamoxifen for a week in November and it made me so sick I stopped.  Then two weeks in December and the same thing.  I started it for the third time a month ago and this time I've had no side-effects at all - it's amazing - I feel great.  At the same time I started synthroid because the doctor discovered my thyroid was off.  Plus - and I think is what is making the difference - my Vitamin D level was dangerously low so the doctor prescribed 50,000 iu of Vitamin D once a week.  Now I feel fine and I'm just pushing the fear of blood clots to the back of my teeny, tiny brain ! ! ! !

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  • jo1955
    jo1955 Member Posts: 8,543
    edited April 2011

    Linda - Thanks for the info on Melatonin.  I will most definitely give it a try.  

    AnnieBear - Welcome to this great & fun group of ladies. This thread tends to move pretty fast.  We can get serious when we need to, but we tend to party alot.  Whenever you have a question, concern or just want to vent, chime in at anytime and we will give you all the support we can.  So glad the Tamoxifen is working for you the third time around.  Could be getting the thyroid balanced out helped?   

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  • JustmeAlicia
    JustmeAlicia Member Posts: 1,529
    edited April 2011

    Girlfriday ~ great advice...  just sometimes easier said then done !  But I like your thinking. 

    Sandee ~ I hope you are a bit calmer today.  Thinking of you.

    AnnieBear ~ Welcome !  Yes...we move fast here.  It is sometimes hard to keep up, but so worth it as there you are in great company here.

    Fridays is usually some sort of party. 

    We have our own Tinkerbell !  The lovely month of JUNE, and JO who is an amazing chef among others ~~  Wink

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited April 2011

    Caroline - yes to yeast infections...I had 3 in 4 months...started taking acidolopholus and it stopped

    Val- thanks for the info. I had read that site before but read it allllllllll again and felt reassured....

    Sherry- I have just given in and am taking the sleeping pills...you need to sleep to heal....hav ebeen aving weird dreams lately but not sure if it is the heart stuff or what...I am hoping not being on Tamoxifen will help me to sleep a bit better!

    Linda- Melatonin gave me weird dreams. Glad it is wrking for you though!

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited April 2011

    Alicia- yes. thanks...24 hour rule...I went to bed early afer my meltdown yesterday and woke up more refreshed..did not sleep well but didn't care....walked to work and worked half the day....then got a lif downtown, ran some errands and walked home so....I feel better. Nervous about getting my heart pumping though so walked a sedate pace....

    GirlFriday-....thank you. You have spoken to the visual learner in me and given me a very clear picture...I had just been visualizing tami as the guy up on the hill with the machine gun blasting th elittle cancer bastards (really, I am not a violent person...have never even played a video game in my life!..but this image worked for me...)....now I will grab a new vision...panicking is not going to help...Right you are....thanks.

    Linda- a typical dose is 3mgs. I use it when  I fly and i does help me with jetlag if I take 3mgs every 2 hours...but it does not help me to sleep

    Anniebear- Welcome to the gang!

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited April 2011

    LInda thanks

    Anniebear welcome and glad you are not having SE's this time around. Like they say threes a charm.

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  • pinkkat64
    pinkkat64 Member Posts: 6
    edited April 2011

    I was diagnosed with IDC last March.  I had a mascetomy of my left breast and been through the expander process and now have an implant.  Will be getting a breast lift on the right side to make me symetrical.  This is my first post.  I have been taking Tamoxifen since Sept. 2010.  I had hot flashes before I started taking Tamox, but now they are worse.  I have them everyday throughout the day.  Being warm doesn't bother me so much.  It's the dizzy and fuzzy headed feeling I get afterwards.   Also when I have the hot flash, it no like it's a flash then gone.  I stay warm for a while, but I can feel it is cool around me (if that makes since.).   Does anyone or has anyone else taking Tamox experienced this? 

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  • tinkertude
    tinkertude Member Posts: 2,047
    edited April 2011

    welcome Annie and PINK... You will find lots of support here and great fun too!

    PINK..I get that lightheaded fuzzy feeling too with Tamoxifen and I dont have to have a hot flash to get it it comes and goes whenever it feels like it. Some days  I feel much more "with it" than others...and my memory is not that great since I have been on it. Never had any of these issues before and I am pre menapausal so it has to be the Tam.

    Alicia... you packed yet ? hehehehe

    SANDEE..How are you feeling today? thinking of you hugs!!! I loved your visual of the hill and thos cancer bastards... thats great!!!!

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  • pinkkat64
    pinkkat64 Member Posts: 6
    edited April 2011

    Tinkertude:  I am so relieved to hear someone else has had these symptoms (sorry you are having them)  I have the fuzzy/dizziness whenever it feels like it too, but it just seems worse when I have a hot flash. I was pre menapausal before the chemo, not so sure now.  My oncologist will check my bloodwork next week and if my estrogen levels are still really low which according to him is where they want them, I will be started on a med for post menopausal women.  Hope that goes well.

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  • June2268
    June2268 Member Posts: 1,202
    edited April 2011

    Welcome Annie and Pink, love the pic how precious......Like the other said this thread is so much fun but informational as well.....

    Well girls I had my Endoscopy today and they found 2 duodenal ulcers and biopsied my stomach.  I wont get the result back until Wed of next week, but let me tell you how much better I feel knowing they actually found something as it was so hard the way I have felt for the last month......fatigue and weakness were SE and it makes so much sense as to why I couldn't do the typical 3-4 mile walks that I do without wondering why it suddenly got so hard....He said my ulcers were on the mend and that explains why the last few days I have been feeling somewhat better....I am sure my results will be B-9....

    Melatonin did not work for me as I am so sensitive to meds and that one kicked my butt.  I woke up the next day so nauseous and sick.  You ladies are lucky who do take it.....

    Sandee Alicia and ECG thinking of you ladies and hoping your feeling better....

    Jo, Tink, Sherry how are you ladies?   

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  • tinkertude
    tinkertude Member Posts: 2,047
    edited April 2011

    Hey JUNE!!!!! So glad you went today and you have some answers!!!! please keep us posted though about the results. they will be b9 girl!!!!!!

    PINK good luck with your onc visit. Tamoxifen has a mind of its own lol!!!! 

    see you ladies later

    MARIA

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited April 2011

    pink- welcome! A bunch here suggested I take my tammi in two 10mgs doses to get rid of the hot flashes (which in January were coming at 9am a work and at 4am in bed)...it worked. After switching to half at breakfast and half at supper, the flashes moved away in the am and were mostly warm flushes at 4am!

    Tink- thanks....today was a brand new day.- melt down over! 24 hour rule works wonders....Woke up at 3am instead of 4am (sice I went to bed an hour earlier) but eventually went back to sleep....big black rings under my eyes though...wow...despite that, I walked to work and then went downtown after my first half day at work....and walked home. I am super tuckered out now though...yowser! Had some fish and a smoothie and am going to put on my pjs soon. ...remembered to notice some new things today on my walk....lots of crocuses out there!!! and some very cool brick and wood work on some houses on the walk home! Thanks for last night Tink. I appreciate the support!

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  • jo1955
    jo1955 Member Posts: 8,543
    edited April 2011

    June - So glad you went today and now you know what is going on - B9 results next week.  Got some good sleep last night - wish it could be every night.  May have to give Melatonin another try.  

    Pink - Welcome - this is a fun and supportive group of ladies.  I can't help you with what you are experiencing with the hot flashes - I had raging, many times a day ones before Tamox.  Now I have a few a day and they are just warm waves - been on Tamox for 3 months.  I'm sure someone else will chime in and give you some suggestions.

    Sandee - Glad the meltdown is over and today is a better day.  I live by the 24 hour rule everyday and it sure relieves some of the stress and takes away some of the fears I still have.

    Sherry - How are you doing?  Hope all is well with you. 

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited April 2011

    Jo - yep....can't change what happened...and while I don't believe in coincidences...not really, it seemed like the best option at the time so....now this is the best option. Fair enough:)

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  • jo1955
    jo1955 Member Posts: 8,543
    edited April 2011
    Sandee - And that is okay.  We will all have our days and we will get through them.  Just remember, you have lots and lots of support here.  We all care deeply.
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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited April 2011

    I feel it....knew this was a safe place to melt down last night- that you tammi folks would understand...I am sooooo grateful I googled "tamoxifen and hot flashes " 3 months ago and found this thread!

    hugs

    Sandee

    ps. packed yet?

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  • dawney
    dawney Member Posts: 211
    edited April 2011

    Sheesh - I had to get diflucan this week also.  Nobody told me about that!

    June - glad you are getting some answers

    Sandee - glad you feel better today

    I stopped taking tami on Sunday because I am having surgery next week.  Not sure how I feel about that!

    Welcome to the new ladies!  You will love it here. 

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  • jo1955
    jo1955 Member Posts: 8,543
    edited April 2011

    Sandee - Not yet. I will get the suitcases out this time next week and then do the packing on Friday.  I am taking off work that day and officially starting the vacation.  I have already told my DH if I am done by noon we are getting the hell out of dodge.  We are not supposed to leave until Saturday but just want to get out of here, relax and not think about the job or bc.

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited April 2011

    pinkkat welcome this is a great place for support

    June glad they found out what was wrong with you.  Will be praying for B9 results.

    Jo I am doing good if only my sleep would get better.  I am going to try the melatonion and see.

    Someone made a comment on hot flashes.  Mine were not that bad at first then got really bad and now has backed off again.  More like warm flushes.  I have been on tamox for 2 months.

    Overslept this morning and did not ice down my boob and had the thought I was going to cut out one of my celebrex because the swelling was starting to go down.  But by late afternoon I was all puffy at my tumor sight.  I guess not iceing down this morning is what did it.  Gee I am 6 months out of surgery and almost three months out of rads you would think it would get  better.  But the medication my BS gave me is working.  I am not having as much pain.

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited April 2011

    it is all a process..but we will ALL get out the other side. We will!

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  • June2268
    June2268 Member Posts: 1,202
    edited April 2011
    Sandee so well said and we when do make it, we should all meet for real and do a real slumber party......and see who really gets whacked by whom!
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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited April 2011

    Gr4eat idea June.....somewhere in the middle of Maine, Nova Scotia, Texas, Culumbus GA., va.....,maybe you ladies should take a fall colours cruise up the eastern short to Halifax?!?!?? your own personal tour guide my duckies!!

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited April 2011

    That would be a blast for all of us to get together.  Another girlfriend weekend.  I love them!!!!!!!!!!!

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  • jo1955
    jo1955 Member Posts: 8,543
    edited April 2011

    June - DON'T LOOK NOW!  WHACK!  WHACK!  I am getting the party started early.

    Sandee - That would be a great idea.  Maybe I could take a side trip to St John's, Newfoundland where my mother was from.

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  • dawney
    dawney Member Posts: 211
    edited April 2011

    Girlfriend weekend sounds good to me!  Just have to recover from recon surgery first.

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