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Bottle o Tamoxifen

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Comments

  • Teklya
    Teklya Member Posts: 362
    edited February 2011

    WOW, okay now I am famished!

     Teklya

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

    TEKLYA..I take 10mg in the am and 10mg in the pm..

    JO How can I not be spoiled, look at all the good stuff you come up with,its not only adorable but looks delicous..Smile does this mean no dessert tonight???? lol

  • Barbie7
    Barbie7 Member Posts: 126
    edited February 2011

    Thanks Sandeeonherown for the tip about the Sleep Problems thread.  I'll check it out, but I have to catch up on two more pages here on the Tamoxi-train!

    B

  • Pennythoughts
    Pennythoughts Member Posts: 36
    edited February 2011

    Wow - this train moves so fast!  I have been off for a few days and missed pages and pages!

    It was a holiday in our province yesterday - Family Day.  But instead of spending it with my family, I spent it in the ER.  Since starting Tamox on Dec. 23, I have had 3 periods.  Very strange periods . . . just not behaving as they usually do.  In any case, I noticed that after each period, the ovary pain was a little worse.  Last week, the day after my period stopped, I got such severe lower left back pain, I thought I might have ruptured a disc, but ruled that out b/c I didn't have the accompanying leg pain or problems with bladder or bowel control.  The pain reminded me of the stabs of ovary pain I've had for years, only this time it was constant, and had moments of intensity almost like having contractions in labor.  Then I thought, I must be constipated.  So for 2 days I took laxative tea.  Great for the bowels, but did nothing to alleviate the pain.  I finally realized it had to be the ovaries, so went to the ER.

    I knew that after breast cancer, I would always be nervous and anxious about future tests, scans, etc., but little did I know I would have to deal with it this quickly!  I just finished rads on Feb. 2, and was beginning to feel better about life in general, and ready for a fresh start.  The ER doc sent me for an IV contrast CT scan.  This is what they found:  2 ovarian cysts, one smaller simple cyst, and 1 very large complex cyst, which is causing all the pain.  Endometrium 11 mm (I don't know the significance of that, if any????)  But here is what I did not bargain for.  Lesions on my liver!  WTH????  5 months ago I had a liver ultrasound prior to my first breast surgery and it was clean.  Now I have lesions?  The ER doc didn't even tell me that before leaving yesterday.  I only know about the liver b/c I asked for a copy of the physician's progress notes.  Today I get a phone call from the ER doc saying the radiologist wants me to get a follow-up liver US immediately!  Am I terrifed?  Absolutely!

    They also found a 2.3 cm long dense capsule-like strructure in the left mid-abdomen within the descending colon.  The doc asked me if I had eaten any metal lately . . . . ????  Ummm, I don't think so.  But no mention of following up anything with the colon.  Gotta love the ER - - they don't know you or your history and don't understand the fears of patients who have once been diagnosed with cancer.

    So now I am freaking out.  My next MO appt is March 14, so I called this morning to try and schedule something sooner.  His nurse told me there is absolutely nothing she can do to get me in sooner.  So I start to cry and tell her I am scared.  She is sympathetic, but tells me her hands are tied.  She told me to go to my GYN about the ovaries.  But I am confused about the Tamoxifen vs. the AI's, and my options if I get my ovaries removed.  I never have understood the Tamox Rx for pre-menopausal as opposed to the AI's for post-menopausal.  Before I started Tamox, I was given the option of getting some shots, and then having my ovaries removed, and then going on an AI.  At the time, (Dec.) I thought why be more invasive than necessary?  So I said no, Tamox would be the choice.  But after the week of ovary pain I've just had, if I have to go through this every month, the ovaries can go!  But where does that leave me for prevention of recurrence?  The Tamox has not been that bad, and so many ladies have had such terrible experiences with AI's with bone & joint pain . . . if I have no ovaries is that my only option?

    I am so sorry to rattle on . . . I am so, so bummed.  After 3 years of depression, during which the BC diagnosis came, I was finally starting to climb out.  I have been seeing a counsellor, taking my Tamox and Effexor, and thought life was pretty good.  Now I feel as I did the day I was told I had BC.  Scared, emotional, alternating between making phone calls to docs and trying to be proactive about all of this, and crying uncontrollably.  I have no one else to unload all of this on . . . thank you ladies for being there.

  • GirlFriday
    GirlFriday Member Posts: 203
    edited February 2011

    Hey Penny!   My whole BC adventure really started because I was having really heavy painful periods.  I had found a lump, but since I have no family hx, I just thought it was a fibroid.  Well the lump took priority over eveything else, and I had a lumpetcomy early Jan and now I'm starting rads soon.  I went in for an endometrial biopsy and they decided it was the wrong procedure, so now I'm going for an ultrasound next week.  I do have a fibroidin my endometrium, but now they think I may have some ovarian issues too.  I'm sorry that you are going through so much.  And although I don't know or can't add any advice to your situation, I can tell you, I'm on the same roller coaster.  Some days it feels like I need to scream because the bottom is dropping out, and other days I just feel like crying as I chug up the hill.  We're here to listen! Take care of yourself.  There is only one you! 

  • Barbie7
    Barbie7 Member Posts: 126
    edited February 2011

    (((Penny))) It sounds like you've been through the mill over the last three months.

    First - about the liver lesions.  I have one lesion that they found during an MRI.  The lesion was not there 6 years ago (pre-BC).  So they biopsied it.  Negative.  Continued to monitor it through 6 month MRI's.  Stable for two years.  Last year, it grew.  So they biopsied it (again).  Negative.  Will continue to monitor.  Even after two biopsies, they are concered because it is growing.  Oncologists in general do not like things that grow.  I'm sorry they weren't more compassionate in the ER in giving you test results (or not giving you results).  I think the liver ultra sound is a very good idea.  It is not as invasive as the liver biopsy, and they may even get some answers.  All I can say is to take a deep breath, and see what the ultrasound results are.  Remember we are all here for you.

    I've also had a number of complex ovarian cysts since starting the tamoxifen.  This is pretty normal I think.  Some people have a great deal of pain, others no pain at all.  I'm sorry you fell into the great amount of pain group.  The 11mm endometrial stripe is concerning.  I would definately make an appointment with your GYN to have that checked out.

    Tamoxifen blocks the usage of estrogen by breast cancer cells. Estrogen is still circulating in the body.

    AI's wipe out estrogen.  In order to be effective, the main source of estrogen production (ovaries) needs to be shut down by surgery, drugs, or natural menopause.  The AI's then attack the remaining estrogen that is created elsewhere in the body i.e fat cells.  Even after menopause, we have a smaller amount of estrogen in our body.  The AI's wipe out what is left.  This is why AI's are not effective in women who still have functioning ovaries (pre-menopausal).  The estrogen load is too high. I hope this helps to simplify things.

    Rattle on as much as you like.  You've had a rough time.  We are here.  You can PM me if you want more information about my liver lesion saga.

  • Pennythoughts
    Pennythoughts Member Posts: 36
    edited February 2011

    GirlFriday - Thanks so much for the encouragement.  I am so sorry that you are on this roller coaster as well.  It is really hard to deal with - - this up and down ride.  Just when you think you're getting a handle on things, something new rears its ugly head.  I know there is very little we can do for one another than listen and be there . . . but that's often enough.  Where would we all be on this ride without each other's understanding and support?  Thanks again . . .

  • Pennythoughts
    Pennythoughts Member Posts: 36
    edited February 2011
    Barbie7  - I guess what I'm confused about is why some ladies who are post-menopausal are on Tamox instead of AI's.  If Tamox is working for me now, and I decide to get my ovaries removed, why wouldn't I stay on Tamox?  Why switch?  Are they not both accomplishing the same thing?  But for whatever reason, my MO told me it was one or the other, depending on pre or post-menopausal, whether natural or not.  I guess the AI's scare me worse than the Tamox due to the debilitating bone & joint pain.  I know it's not the same for everyone, but it seems a lot of women can't tolerate them.
  • chabba
    chabba Member Posts: 3,600
    edited February 2011

    Penny -  I am well past menopause but am on tamoxifen due to very bad reaction to Al's.  The SE's for tammy are much easier to handle. 

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

    Pennythoughts - Sorry you are having such a hard time-I certainly hope you get some answers and treatment real soon. Rattle on and on and on if you need to.  We are all here to support you. ((HUGS)) to you.

    Tink - You can have dessert tonight as long as you finish all your dinner.  Any special requests?

  • MarieK
    MarieK Member Posts: 467
    edited February 2011

    Chevy so sorry to read about the hearing loss.  Are you stopping Tamoxifen?  If so will you take something else?  I hope that you get the hearing sorting and get some comfort from knowing that the hearing aid allows you to hear and that something can be done.

    I'm confused about Tamoxifen vs AI. 

    I've been on Tamoxifen since April (stopped chemo in Jan but ONCs wanted me to wait until after RADS to start).

    I've had 2 breaks for surgery but have diligently taken my 20 mgs every morning.

    Yesterday I saw my ONC for a 3 week follow-up of a 6 month follow-up and told him that I have not had a period since Oct 2009 - stopped after my first chemo infusion.  I actually got my period while I was in hospital having my MAST, then for 2 months after but after the first chemo it just completely STOPPED.

    I was looking into having my ovaries removed last summer but blood tests showed that I was menopausal and not producing estrogen from my ovaries (<100 pmol/L) so I cancelled it since it was unnecessary surgery. 

    So yesterday my ONC tells me that I can now switch over to AI since it's been over a year since my period stopped.

    I asked about side effects and he told me joint pains was the most common with AI (I know I have to do more research on this).

    I asked him when I should switch and what I should do with all the Tamoxifen I still have left.  He told me to continue taking it and when it runs out take 1 month of AI and if I "like" it I can continue and if I don't "like" it I can go back to Tamoxifen.

    WTF?  What does that mean?  I'm very unclear about which drug I should be on or if I should take anything at this point!

    Anyone else facing this dilema?

  • MarieK
    MarieK Member Posts: 467
    edited February 2011

    Jo I am enjoying your food posts! 

    I personally love Sweet Red Chili Sauce (Thai Kitchen) and use it just about everything.  Yesterday I tried it with mixed baby greens.  I just mixed baby greens with a tbspns of it instead of salad dressing.  It was sooo good!

    I also use it with my sweet and sour crockpot meatballs -

    Frozen meatballs

    1 jar of grape jelly (2.5 cups?)

    I jar chili sauce (or ketchup w/ chili powder, it's the same thing!)

    1 cup sweet red chili sauce

    2 large teaspoons of pureed garlic

    Mix liquid ingred. in crock pot, or dutch oven, and cook on med. heat until grape jelly dissolves. Add extra spices, salt, etc, if desired. Add frozen meatballs and cook on 'low' for approx. 5 hours. Serve on rice or noodles.

    YUMMY!!

  • June2268
    June2268 Member Posts: 926
    edited February 2011

    Girlfriday/Pennythoughts/Barbie7 how awful all you ladies have been through and still going through.  please come here often and know there are so many women going through something who can help out or just listen......I feel like the news lately is getting scarier and I am now worried where I used to take it one day at a time....

    JoI think that is the best looking dessert ever and yes I like that you are so smart and pick up on all hints..........my kids want me to make that cake for them.....ha ha what a joke that is, so not the baker.....I can cook and bake, but not that....So lovely lady did you like the flops I picked out for you and your gal Tink.

    Yes Tink you must eat all y our dinner before we indulge in that.....ha ha

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

    Penny - before aromatase inhibitors (AIs), ALL bc women took Tamoxifen whether they were  pre or post-menopause.  It has been around something like 25 years now.  Since the AIs came out, most oncs prefer post-menopausal women take AIs - but it is not set in concrete.  I;m post-menop. and am on Tamoxifen because of side effects experienced on AIs.   But, there are risks and side effects no matter which one you take.  A concern about post-menop women on Tamox is thickening of uterus (because your period isn't sloughing off the lining anymore).  My gyn told me just about all post-menop taking Tamox experience some thickening but it usually is not serious.   Get your onc to explain the two drugs, why he/she recommends one over the other, and your options -- YOU have a voice in the decision which to take.

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

    Girlfriday/Pennythoughts/Barbie7 I am so sorry for all your added stress. I dont know what to say execpt yes we are all defitnely hear for you. PENNY I am so sorry the ER was not as effecient as they should of been, but going ahead and getting the liver and even the colon checked is a good idea, always better to be safe. Best wishes and please keep us posted.. hugs to you all (((( hugs))))

    Mariek.that recipe looks good!

    JO and JUNE... Geez you ladies drive a hard bargain but I suposse you right I should at least eat dinner first.... hhmmm let me think JO since that choc cake was so good and rich I will try to be a good eater tonight and request a piece of pie ( any kind ) with ice cream of course :) lol well that IS good isnt it Wink

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

    Tink - Make sure you eat all your vegetables young lady!  I'll see what kind of pie & ice cream I can whip up later.

  • JenXX
    JenXX Member Posts: 11
    edited February 2011

    I was diagnosed with breast cancer at 36 and had a mastectomy of the right breast.  I've been on tamoxifen for a year now, and finished herceptin in December.  I just had reconstruction a few months ago and started dating again.

    I am now 38 and am not sure if I'm hitting my sexual peak or the tamoxifen is affecting my hormones but I feel like an 18 year old boy!  I want sex all the time and have started watching porn and using toys 2 or 3 times a day.  I don't have a boyfriend and have taken to posting ads for "casual encounters."

    Has anyone else had this effect from tamoxifen or is it just my age?  I keep reading that tamoxifen takes away the libido, not increase it.

    thanks for the help,

    Jen

  • Sherryc
    Sherryc Member Posts: 4,503
    edited February 2011
    Jen-just started and not had that effect, but if it does I think my DH would be very pleased!!Smile
  • redninrah
    redninrah Member Posts: 366
    edited February 2011

    Jen- same here, just started it, but i do notice, that i cant sleep as fast as I could before, and my mind is always racing ahead......its like I have an adrenaline rush......... LOL

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

    Jo - and I'm putting in an order for strawberry shortcake tomorrow :):)  For some reason I'm craving strawberries!

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

    JANET..Strawberries sound good! have you ever been to Belvedere Plantation I think its in Fredricksburg  ( Massopanox )to strawberry pick? The best. they are so sweet and delicious! Cant wait to go int the spring this year.

  • June2268
    June2268 Member Posts: 926
    edited February 2011

    I just bought strawberries to make strawberries and cream....fattening, but oh so delicious!

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

    And they're full of antioxidants!  Wegmans had big fat red ones from California on sale today.  So they must be coming into season there.  I didn't buy any shortcake though :(  

    Tink - Have not picked strawberries there but will have to put that on my list of things to do!

  • sunangel27
    sunangel27 Member Posts: 234
    edited February 2011

    Jo~!  LOVING THE FOOD AND DESSERTS~!!!!!!! :)

     Sherry, hey there, hope you are doing better.

    Teklya........yep, just go for it....... we will all be here together!!

    Chevyboy......so so sorry you are having to go thru all this!!!!!! It sucks :(

    I got ahold of the nurse today, she said to start back on the tammy today, so when I got home from work, I just popped it in my mouth and said here we go again!!
       The SE's I believe I was having before, was fatigue, and lots of crying......seemed like I would cry at the drop of a hat!! or pin or anything..... just hoping that doesn't happen this go round...but will have to deal with it if it does.

       On top of everything else found out the bf has been seeing someone else too, so dumped his butt quick!!!   That won't be a problem!!! hehee   NO SE's from that!! :)

       So now here I go on with life......I can breathe again and that's a good thing :) 

    Have a great night all. I have read and read and read here, trying to catch up since I came on Saturday night.......y'all talk alot! heheeee        But thank goodness that we have here to come to to be able to support each other!!
    HUGS to all of you!!!!!

    Paula

  • sunangel27
    sunangel27 Member Posts: 234
    edited February 2011

    P.S......... I forgot to ask!!!        Has ANYONE still had needle like, sharp pains going thru their nipple/breast area two months after the excersion?????      There are days when it gets almost unbearable still and there are days when it is just there once in awhile, and days it isn't at all.....just wondered if anyone else has or had this.       (When I talked to the nurse over a month ago she said it was the nerve endings coming alive....... but didn't think this would be going on so long after surgery ! (Dec. 22nd!)

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,781
    edited February 2011

    congrats Dawney...must be a HUGE relief.

     Tink- I have swelling too on the left side...the breast is smaller and should not fill the bra cup but does most days because of he swelling..end up with a line across the nipple and then aching along the side. Exercise helps but also hurts becaus eI am working that part of my body hard.lymphedema scares the crap out of me...especially with regards to flying so I am doing lots of exercizing and hoping...tingling and pain...not so much the arm as the ribs just alongside he breast...could be much worse though so I remember to be grateful every day.

    Teklya- You can do it. split the dose...10 mg in am and 10mg in pm..think positive , exercize and just be self aware...rememebr that the tamoxifen is helping you to stay cancer free...we will walk you through it...start slowly. your body will need some time to adjust and adapt to it so be gentle with yourself. I got my prescription the day before radiation and started it as soooooooon as my blood results came back from checking to see if I was menopausal or not...y oncologist didn't beleive me? Anyhow, I jumped in with both feet. i was emotional but i think it was the stress of the radiation more than tamoxifen...sleep is a problem for me but it was before breast cancer too so.....no surprise there. I also use glycine to help my sleep but melaonin helps too and valerian for many people. You CAN do it...just jump off the diving board....the rest of us are inthe water waiting for you.

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

    sunangel.. I had reconstr in July immediatley following my bilat and a revision in Nov and I still get sharp shooting pains occassionaly through my boobs, even though they are numb, strange isnt it? I wouldnt worry about it really, they told me the same thing ,they said it could happen up to a year after surgery. Still have one more revision in the spring.

    Sandee I know what you mean about the lymphadema scary stuff. I got measured for an compression garment in case we fly this summer. You can see a little bit of a indentation under that arm and some days it is so sore to touch, so I dont touch it lol... but yes I always feel everyday there is something off and uncomfortable on that one side... but I agree alot to be grateful for could be worse :)

  • chabba
    chabba Member Posts: 3,600
    edited February 2011

    Sunangel, nerves take a long, long time to regrow.  Two months isn't long for a nerve I would think.

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,781
    edited February 2011

    I am going to be ravelling in April...have tried to split up the trip so the longest time is 7 hours...but wondering if I should be fit for a sleeve as well just in case....

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

    Sandee I would my PT said even though I didnt have any signs of Lymphadema, it is good to get a garment that is made for prevention as opossed to controlling it. especially for longer trips. worth checking out :)

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