Bottle 'o Tamoxifen

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

    Jo... vent away sweetie...I understand how you feel too. I have had vivid dreams lately im not sure whats worse the insomnia or the dreams. It was like I could feel all that was going on . Mine was about getting a port put in and getting chemo. I think sometimes I second guess my decison to get chemo with an oncotype of 23 ... but what is done is done... I said to my mom today I am so tired of being tired and down.. could cry at the drop of a hat... heck cried watching dancing with the stars tonight i was never a crier... so vent away sweet lady thats what we are here for to listen and support my friend. Your cruise is right around the corner , so hang in there my friend and know that some relief is on the way!!! geat big hugs to you tonight!!!!

    DAWNEY..Your very welcome and I am glad you are feeling better! hugs

    ALICIA I hope you are feeling better too, soon you will be cruising and sitting under a palm tree with a drink that has an umbrella in it!!! hugs to you too!!!!

    wish we could do one big group hug, seems like we could all use one!!!

    DIDI..I had no idea about the flying issue either all they have ever said is stay hydrated and walk around as much as possibble if I was going to fly.... will have to check that out too when I go back in June.

    love to you all!!!!

    Maria

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

    Tink - I understand about the second guessing thing.  I did not have the oncotype test done.  Did not know about it until I found this website and asked my onc about it.  He said it was not necessary and I did not insist on it.  He said it was not indicated since I was ER/PR+ and HER2- and my tumor was so small.  I did not insist on it - found out it was too late by that time anyway.  We do second guess alot and I have decided I just have to live with the decisions I have made.  I was watching Dancing with the Stars too and found myself a little teary eyed at times.  Hopefully, this will pass for both of us in time. We are pretty strong ladies and we will get through this.   Heck, we have each other don't we?

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

    Jo...thank God  for that!!! I am so grateful!  My onotype was somessed up to. I had 2 cancers lobular and ductal and they sent the ductal out twice by mistake and it had 2 different scores one was low and one was the 23 intermediate they didnt know what to do with me!! geesh!!!! I was so scared and overwhelmed I didnt know what to do either so I asked do the risks outweight the benefits for me and they said 2 seperate opinions... we dont know!...  they said it decresed me reoccurance by 4% i think if i did it so i didnt... but know I will admit when something feels off or not right I get that little panicky feeling and have to take my deep breaths and let it go let God thats what I sat until it passes...

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

    Tink -  You would think that since oncs are dealing with CANCER that would be more careful when ordering and sending out tests and then reading the results correctly.  It can make a difference in treatment options and also what it can do to our heads.  The added emotional stress that places on us is so very wrong.  We sometimes have to take deep breaths we shouldn't have to take.

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

    ABsolutley... My onc said well "this proves that tumors are not homogenous" I felt like an experiment ok good now we know 1 tumor can have aggressive qualities and also no agressive qualities what are we gonna do???  I try very hard to accept that I have a new normal its just some days it so hard know what I mean?

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

    Jo I know what you mean about the anxiety of the cancer returning.  I really had not been anxious about having a distance recurrance but very anxious about getting a new cancer in either of my breast.  After my appt last week with the BS and her sugesting that it would be best for me to have a BMX I have been so much calmer.  Even though I am going to have to wait for my rads breast to heal just knowing that I am cutting down my chances to almost nothing makes me feel so much better.  I know nothing is for sure but at least I am cutting down the odds.

    Tink those vivid dreams are tamox.  I have had them since the beginning and they wake me up they are so real.  Not scary just active like it is happening right now.  Then I can't go back to sleep. 

    I don't understand why the Dr's don't tell us everything about tamox.  They should give a sheet with does and don'ts and possible SE's.

    I guess I will keep you ladies guess on the boys until Friday.  You will just have to check in to see who is coming.

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

    Yes, I know what you mean.  I still trying to get used to the concept of a "new normal"  What are we gonna do?  Hope we can trust what our oncs tells us to be the truth.  I know mine has not steered me wrong so far.  If he did, my DH would have something to say about that since he sees the same one.  When I was diagnosed he went with me to my first onc appt and the ground rules were set then - we would have separate appts.  That way we could talk about each other.  LOL!

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

    lol!!! too funny! I like mine too she is very compassionate and has no problems with me asking questions which is a good thing because I will have a ton in June although she did give me her email I could always email her...hmmm thats a thought!!! I wonder what SHERRY has cooking up for us this weekend... making room in my closet..hahaha

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

    LOl, Tink you will just have to wait and see.

    Jo my mother in law does that too.  She always needs to talk about my FIL, lol

    I too am glad my onco does not mind questions as I always have some for him. And when I ask his opinion on something he always has one and tells me why, which I like as well.

    Going to bed and see if I can sleep without  a pill tonight.  May be exhausted tomorrow we shall see.

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

    Sherry - Wish you sweet dreams and a night full of sleep.  The onc nurses aways ask about DH and I tell them I left him at home where he can't terrorize them LOL!  He gets to go tomorrow for his 6 month follow up.

    Tink - Sounds like Sherry is the one being sneaky this week.  We may have to watch her.

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

    Jo..seeee its not ONLY me.... hahaha...  I just do it more often :).... gotta keep it interesting!

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

    Tink - And you get caught. hehehe

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

     I know guess i need more practice huh? lol

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

    You just need to get sneakier.

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

    oohhh now your talking!!! you could be my partner in crime... what do ya say????? :)

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

    Tink - Now that's what I'm talking about.  Why didn't we think of this sooner?

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  • tinkertude
    tinkertude Member Posts: 2,047
    edited April 2011
    better late than never! Wink
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  • jo1955
    jo1955 Member Posts: 8,543
    edited April 2011

    You said it sister - gonna have to talk about this tomorrow.  I am exhausted and am heading to bed.  Good Night and Sweet Dreams.

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

    sounds good sweet dreams to you too!

    love and hugs my friend xo

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

    Tink - Love & Hugs My Good Friend

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

    Morning girls ! 

    I don't know what I would do without you girls.  You make me feel normal, as so many of us share the very same emotional ups, downs and fears. 

    Ugh ~ about the flying and tamoxifen.  I have a short 2.5 hr flight to Florida for the cruise ~ should I not be taking tamoxifen?! 

    Hugs girls..

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

    Alicia - Maybe  call to your onc is in order.  I was not told I couldn't fly.  If it were ne, I wouldn';t worry about it especially with such a short flight.  Come on - WE are going on a cruise.  It is just around the corner.  Are you packed yet?

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

    I am not going to worry about it ~ I will wiggle my toes.  I don't sit still anyway ~  I AM NOT packed yet, but have bought quite a bit of new clothing.  :))  Once Saturday comes and it is 1 week away, the suitcases come out and we start getting excited.  This trip is sooo needed.  I cannot wait.  Are you ready??? 

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

    Not yet.  I have taken inventory of the suitcases and have an idea of what I will need.  I have all the clothes ready for the "dress up" nights.  I did get DH some new clothes and I got some shorts.  I am taking Friday off to get packed.  We are not supposed to leave until Saturday but I have already warned DH if I am ready on Friday, I am out of here.  The dog can go to the sitter's early.  You are right, this trip is sooo needed.  I can not wait. 

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  • Teklya
    Teklya Member Posts: 435
    edited April 2011

    Just a thought, either the Doctors don't tell us all the info about the drugs for fear we would NEVER take it!!  OR

    They themselves are in the dark and discover the new info as we do slowly after someone has been told about things along the way.

    have a perfectly sunshiny day today

    Teklya

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

    I think my body may be finally getting adjusted to tamox.  Not completly but getting there.  I did not take a sleeping pill last night and I did not have the vivid dreams that I have had before.  I did not sleep really well until about 2 or 3 am but when the hot flashes came I went back to sleep.  So maybe things are getting better. 

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  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited April 2011

    Teklya, I think you are right about the docs learning slowly. They often know the research says to use these drugs, they know that the statistics indicate better survival of a GROUP of women, but they don't know how an individual drug is going to work in an individual patient, so it is important for us to help them learn.  My MO told me she was glad I felt comfortable sharing with her as it helps her anticipate things with me AND other patients.  The one thing most docs DON'T seem to get is how each of us has our own life values and how that should be addressed with the treatment plans.  I still have my Rx for tamox but have not convinced myself to fill it yet because of the last debacle of SEs with it. Also, I have been reading that Pr- may not even respond to it, so am not sure it is worth 5 years, but the onc never addressed this with me, so maybe I will ask.

    Bon voyage you wonderful travelers! (my understadning is the tamox does not increase chances of heart problems, and might actually decrease them, but it DOES increase clotting in the venous side of the circulation, so you can get clots in legs or lungs, so it is important to stay hydrated and move every hour or so to keep circulation going in the legs)

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

    ok JO and ALICIA...whose suitcase is big enough for me to hide in????/ hahahaha...have a wonderful time ladies!!!! 

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

    Tink - You can come with me and you don't even have to hide in my suitcase.  Heck, I may even feed you if you are a good girl.  hehehe

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

    Thanks Jo...... Im ready too then!!!! Smile  your the best.... I dont eat much really!!!!!

    Disney Tink Glow Star Pilot Case

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