About-to-Start-Hormones Group

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  • Tigwin
    Tigwin Posts: 275
    edited October 2008

    Hi Ladies,

    Glad to find this chat.  I had chemo from March to July.  We did the test and found out I do not metabolize Tamoxifen.  I had a bilateral mastectomy, TRAM Reconstruction and a complete hysterectomy.  This way I am in post menopause.  I am headed to my Onc tomorrow to find out which drug she wants to put me on.  Not very excited but I know this is the next step.  Looking forward to getting through this together. 

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  • KAK
    KAK Posts: 1,679
    edited October 2008

    Oh, god, Tigwin.  How's the head?  Do you have hair again?  How did the TRAM go?  You've been through the mill.  Glad you're here.

    Kathi

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  • Tigwin
    Tigwin Posts: 275
    edited October 2008

    Hi Kathi,

    Thanks for asking I actully have some hair and just started to ditch the scarf.  The TRAM went fantastic. I am so lucky.  Still going through recovery but I have not complaints.  Just glad it is over and on to the next step.  Thanks for starting the group.

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  • sunshine787990
    sunshine787990 Posts: 147
    edited October 2008

    Kathi

    You said it all!  I'm right here with you! 

    Finished my Rads last week..

    Will start tamoxifen this week.

    Looking forward to sharing with all of you

    How long do these sharp electrifying pains in your breast last???

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  • KAK
    KAK Posts: 1,679
    edited October 2008

    Sunshine, my sharp electrifying pains (love that description) have started to lessen considerably since I've been doing some gentle self-massage of the breast, mostly in the shower when I soap up with the Dove soap they had me get during rads!!  Also use Aquaphor to massage the scar sometimes.  I have a very lumpy breast with adhesions & a puckery scar & a very unhappy nipple.  The nipple is finally way better though & putting Oragel on it (regular strength) plus a good ol' gel cold pack sometimes really calmed it down.  Everyone's a little different on that, so you'll get lots of feedback on that, I'm sure.  Good luck!

    Got my Effexor this morning, so I'm about to take one with my second-ever tamoxifen pill!

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  • pattyk
    pattyk Posts: 25
    edited October 2008

    I just left the sept. rads thread and am now on to being with you.  I see some familiar names and am glad to be keeping up with all of you.

    I see my med. oncologist Friday and will be smarter in asking questions because of what I've read here.  Thanks for the info.

    I, too, know what you mean about decking someone.  The rads are over but the battle continues.

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  • Tigwin
    Tigwin Posts: 275
    edited October 2008

    Well got the big pill that will be my friend for the next five years.  My onc put me on Femara...have to read up on it.  I will start on Monday...keep you posted.

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  • Tigwin
    Tigwin Posts: 275
    edited November 2008

    f

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  • shari1232
    shari1232 Posts: 161
    edited October 2008

    Done with Mammosite rads yesterday... hallelujah!!!!  On to tamox.  Not sure if I'll start tomorrow or wait a few.  Doc said just take the whole pill, no ramp-up.  I'm still weirdly loopy after taking 2 perc yesterday before final tx and balloon removal (perc to make me not care about pain of removal).  Maybe I'm loopy from destressing or from the 10 hours of almost continuous sleep last night.  I need cofffffeeeeeee.... and to get to work!  Hugs to all.  Thanks, K, for your kind words on the other thread.  BTW, it's really nice to NOT have a hole with tubes sticking out of me any more! 

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  • sunshine787990
    sunshine787990 Posts: 147
    edited October 2008

    Good Morning Ladies

    Took my first tomoxifen last night...After reading all the side effects I really

    just wanted to flush it!  So far this morning I haven't transformed into anything

    other than my normal bald mummy self! I am ready for Halloween!

    Shari1232 Congrats on finishing your RADS! 

    Hugs to all

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  • Ela73484
    Ela73484 Posts: 12
    edited October 2008

    Hi ladies,

    I will be done with my rads on Friday.  Can't wait it has been a long trip.  I have my prescription for the tamoxifen. My doctor recommended I wait a week after rads to start.  To give myself a break.  So I will be starting the second week in Nov.  Have a nice day.   

    Ela 

    (How do I get rid of the Edit/Delete on the bottom of the post??) 

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  • NancyD
    NancyD Posts: 3,562
    edited October 2008

    Ela, the edit/delete are there for you to come back and make a change or remove your post at a later time. No one else sees it, although they will see the same icon on thier own posts.

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  • jules3
    jules3 Posts: 73
    edited October 2008

    Hello Dear Angels...I just saw my Onc. today to discuss the Onco test results of 11...ofcourse I was happy about that ...no chemo...but I got my scrip. for the tamox...they took blood today to see how I metabolize the succor so I ll know in a week...I m thinkin tamox will do me a real favor, as I am ER+100 and PR+68% --if my genetics allow good metabolization...is that correct thinking?  that becuz it s so high? (i just thought of it now and not during the appmt..DUH!)

    I ve read some on here about whether to take it am or pm....I rarely get nauseated so I d rather take it in the am so it has less chance of adversely affecting my sleep?????  Input from anyone???  This ll be great to track everyone..thanx so much..jules

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  • KAK
    KAK Posts: 1,679
    edited October 2008

    Shari, YAY on being done with rads!  Let us know how you're healing with that.

    Day 3 of tamoxifen & effexor for me today & I felt really great, surprise, surprise!  Maybe because I got about nine hours of sleep last night, which is amazing in & of itself since I've been mostly experiencing the menopausal sleepus interruptus for the past 3 years.  Taking 10mg AM & 10mg PM per my med onc. 

    NancyD, how's Arimidex so far? 

    I have a feeling we may all be asking for a script for some kind of estrogen cream sooner or later, so that certain parts of our bodies don't dry up & fall off due to estrogen-deprivation!!

    Kathi

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  • Skye64
    Skye64 Posts: 109
    edited October 2008

    hi Ladies....today I got my result from the FSH-level. It says, that I am still premenopaused....Cry

    So I have to take the Tamox. I am still taking  5 mg in the evening. And I am doing good. My gyn thinks that is a good idea to start with the small dosage. And we talked about some kind of estrogen cream.,because this certain part is dry......he gave me a prescription....I should use it.

    And I got some other problems. Since two weeks I have some pain all over my ribs and under the right rib bow...Today I had a ultrasound. I was so afraid, that is something going on at the liver. But the techn. told me, everything is fine...Tomorrow I will have a bone scan. I am scared again.

    Does anybody have rib pain???

    This journey will never end.......

    congrats to all rad. finisher...Smile

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  • KristyAnn
    KristyAnn Posts: 793
    edited October 2008

    Tigwin,

    When did you have your hysterectomy? I did chemo April-August and am finishing rads this week. My next step is the hysterectomy and Im trying to figure out how long to wait after rads to go through that----any thoughts?

    Kristy

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  • Anonymous
    Anonymous Posts: 1,376
    edited October 2008

    Hi again Ladies,

    I'm still deciding on Tamox. I need to make an dr. appointment just to talk again and get that test- I'm curious. Plus I want him to check my estro. level again.  Is the usual dose 20mg?           What about a low dose of 10mg?

    Wait - isn't tamox for premenopausal women ??

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  • mzmiller99
    mzmiller99 Posts: 894
    edited October 2008

    NancyD - Just took my first Armidex tonight. Found out my OncotypeDX was 15 when I saw my med onco today, so away we go on the hormone-killer road.  Oddly enough, the prescription costs me just what the Prempro used to cost, when i was working hard to keep my hormones alive.  Frown

    Susan

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  • Skye64
    Skye64 Posts: 109
    edited October 2008

    Rose47

    Tamox is for pre and postmenopaused women possible.

    About the low dose: There is a italian study...but I think they all need more studies about that.

     http://www.issoonline.com/content/3/1/29

    http://jnci.oxfordjournals.org/cgi/content/full/95/11/766

    Like I said... I started with 5 mg in the evening...and I will it increase , maybe in 2 or 3 weeks to 10 mg. And if that is going well, I will increase again. I think that is a good thing to adapt, cause I am so sensitive...

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  • KAK
    KAK Posts: 1,679
    edited October 2008

    Rose, I'm post-menopausal & taking tamoxifen.  It's okay for either pre or post.  I can't take aromatase inhibitors because I am already osteopenic & AI's prevent ANY estrogen from circulating in the body, so can cause decreased bone density.  If you have any osteoporosis in your family history, you need to stay away from the AI's if you're okay with tamoxifen.  I have post-meno friends who've taken tam the whole 5 years & done just fine with it.

    Kathi

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  • Makratz
    Makratz Posts: 12,678
    edited October 2008

    Hi Skye64,

    I don't have rib pain but I do have shoulder ain.  I have a dull ache in my left shoulder.  I'm hoping it's nothing.  What does your rib pain feel like?  Sharp pains? Dull?

    I'm glad your liver turned out fine.  Why are you having a bone scan done.  I hear lots of people talking about bone scans, pet scan, etc.  Are we supposed to do these tests after rads?  I have an appt with med onc and rad onc in the next few weeks.  Am I missing something?

    Hope your test goes well for you tomorrow.  Best of luck to you!

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  • Skye64
    Skye64 Posts: 109
    edited October 2008

    thanks Makraz,

    the rib pain is on all my ribs not only on the left rad. side...I do not know why.....it is hurting me, when somebody is touching me there....and I have some dull or pressure under the right rib bow.

    That is why the doctor ordered the bone scan...I am alway worried about mets....I am paranoid on that...actually they will order such things, if you have problems...

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  • Msdede
    Msdede Posts: 16
    edited October 2008

    Hello.. tomorrow I finish my first bottle of tamoxifen.  I am exhausted, I can't sleep.  I switched to taking my little pill in the morning to taking it at night, but that has not done anything for me as far as helping me with my sleep.  I have tried Benedryl, heard that can help make you sleep, not for me.  I have also tried sleeping pills, nothing.  I go to bed and all I do is toss and turn, or fall asleep and wake up after an hour or so, all night long.    Has anyone had sleeping problems and what are you doing for it?

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  • Anonymous
    Anonymous Posts: 1,376
    edited October 2008

    Thanks for explaining ladies about using Taxo.

    I might go for the 5/10 but no way 20mg. Everything seems to be a overkill.

    Have a good day everyone !!

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  • JenniferC
    JenniferC Posts: 1
    edited October 2008

    Hello Everyone,

    I've been taking tamoxafin for the last month and also started with lupron

    injections at the same time. I have to do lupron every 3 months for 2

    yrs. and tam. for 5. I don't know about others who are following the same

    kind of regiment but since I started I've been feeling lathargic and depressed.

    I would be interested in hearing others reactions to the side affects of these

    meds.?

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  • NancyD
    NancyD Posts: 3,562
    edited October 2008

    Kathi and mizmiller - so far everything's fine on the Arimidex. Just the normal stuff a 57 year old post-menopausal woman would have. One thing I did notice is that some arthritic pains that I haven't had in over a year are back (knees and feet), but not so badly that it keeps me from doing anything...just the first-thing-in-the-morning kind of pain.

    Hot flashes are a little more frequent but not untolerable. If I follow the same path as my menopause, they should be decreasing by the Spring. I really don't mind them in the winter, though I look odd whippng off my hat or opening my coat when everyone else is huddling to stay warm. :-)

    Msdede - I have had sleeping problems since I went into natural menopause several years ago. I fall asleep fine—no trouble—but staying alseep all night is impossible. I wake up at least two or three times after an initial 3-4 hours. I guess I've gotten used to it after so many years. 

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  • KAK
    KAK Posts: 1,679
    edited October 2008

    Msdede, are you taking an antidepressant?  They can help normalize your sleep cycle & reduce hot flashes from the tamoxifen.  Plain ol' menopause is famous for wrecking sleep, like Nancy said, & the hormone therapies can put us all through menopause-like symptoms.   We can't take SSRI's like zoloft or paxil with tam, but we can take Effexor & Lexapro.

    I just finished my first five days on tamoxifen & effexor & so far so good.  I can't tell if I'm having any side effects because I've been having hot flashes, etc., for three years now!!  No worse, maybe a little better & actually I slept better this week.   Nancy, I actually had one night this week where I only woke up once & got a total of nine hours' sleep!!  Heavenly, as I'm sure you'll appreciate.

    Kathi

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  • Msdede
    Msdede Posts: 16
    edited October 2008

    KAK, no I am not taking a antidepressant.  Would that be something my dr. might suggest?  I have put off calling because I keep expecting it to stop and I will go back to sleeping all night.  I am not due to go back for a follow up until Dec., I don't think I will be able to last that long.  Also, I am 42 years old, I am still pre-menopause, so I can't blame it on that yet.

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  • Makratz
    Makratz Posts: 12,678
    edited October 2008

    Msddede,

    I am 42 years old too.  I have been having 'sleeping problems'  for about 2 years.  This all started prior to my BC.  I thought I was way to young to have sleeping problems associated with menopause, but my doctors have assured me I am not. I have not gone through menopause.  I would LOVE to sleep through the night.  The fact is, it just doesn't happen for me.  Apparently I am not alone.  You just have to stay calm and try to get back to sleep.  I actually got used to it so it made it easier.  I wish you the best of luck and a restful night sleep!

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  • joanne2
    joanne2 Posts: 74
    edited October 2008

    Hi KAK,

    I saw your story, hope all is going well.  I work as a PTA, I went through the 5x'swkly x's 5wks + an add shot at the lump site.  Now, as you know, five years later, it's back... I'm going fine, it's low grade vs moderate grade last time.  I'm going for the double "m" but have decided to wait to Jan.,02.. Can't help it, I'm cheap and take calculated chances..  But I do want to say I remember telling my rad onc that I thought she was trying to fry my nipple off!  I used aquaphor religiously! It gets better.  I also want everyone to be careful with the anti-depressants..  I've had some very close kind people get messed up with them.  One person may do great with them but the next can have a very different reaction.  I had two friends go through anger "trips" and suicidal thoughts for a year!  My friend's step son hung himself after months of taking and not taking them.  DO NOT EVER stop taking them "cold turkey" you need to very very slowly reduce your dose.  If anyone has questions about anti-depressants please read "the anti-depressant solution" it's written by the Doc that got the black label warning on anti-depressants.  I didn't write this to offend anyone, like I said some people do fine with them but not all.

    Take care my PT friend!  I'm cheering for you!

    Joanne2

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