Bottle 'o Tamoxifen

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  • joystars
    joystars Member Posts: 95
    edited April 2011
    Hello my Tami sisters, I'm new here.

    In 10 days will be my 1st survivor anniversary. Yep, on April last year at age 29 I found a lump on my left breast that after a mammo, ultrasound and biopsy showed it was cancer. The very next day after my diagnosis I was told I was pregnant (my first baby ever!) and I knew this was gonna be a real rollercoaster of emotions for my lovely husband, our families and myself...

    Long story short: I went under lumpectomy in May, no clear margines but clean lymph nodes. Second surgery was a mastectomy in June (no re-construction YET). Because of my pregnancy, my chemo treatment was on hold until I gave birth, here in Norway there are few studies about how chemo affects the baby so Onco and surgeon recommended to wait. After "enjoying my pregnancy" ,the scheduled c-section was at 8 months pregnant in November.
    My beautiful daughter did amazing at all times, not only while I went under both surgeries but also at birth: she arrived to this world with a good loud cry :) and after 2 weeks at the NICU we finally went home to spend Christmas and New Year together as a family.

    FEC chemo started two days before Christmas, lucky me! Hair dissapeared after 15 days.. now I wear a wig (her name is "Chonita") when out and about and at home I go commando. Just 3 weeks ago I had my last round of chemo and since then my hair is growing back... soon I'll have the same lenght as my daughter's baby hair :)

    MRI and CT scan of the chest, spine and pelvis were performed a month ago and showed no cancer at all, I'm clean :) Now those are some good news.

    Now is time for Tamoxifen for the next 5 years of my life.... oh well. Starting tomorrow May 1st 2011. So here I am, joinning this wagon. Any advice, words of support or simple "hello" are very welcome.

    Today I went to pick up Tamox at the hospital pharmacy, to be honest I'm not really looking forward to start this in the morning. The SE's are somethign I'm quite worried about, I already have hot flashes due to chemo and they are not fun, not when I'm changing my baby's nappy, not when I'm having a dinner out with friends....not when I'm only 30 years old!

    Oh well this is me, will see how it goes. I've been trying to read a bit this thread every now and then but for me Tamox seemed to be something so so far, now it's time for it. I think I'll be around more often now :P

    Hoping that everyone is having a nice weekend!

    Joy :)



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

    Joy welcome to the train. Some do not have ant SE and others have plenty. Let us know how it is going and feel free to ask questions. I am sure someone can help u. Good luck

  • Beanius
    Beanius Member Posts: 1,697
    edited April 2011

    Hi Joy, What an amazing story!! Welcome, I've been on "the Tami Train" for 4 months, doing okay mostly. Congratuations on your cancerversary too! Weeeee! I had my 1st on Mar 29! So glad you are getting back to health and have all that behind you. Now onto complete recovery and all that life has to offer!!! BTW - most SE's have been what you would expect for someone going thru menopause, mostly hot flashes...Take care! ~Beans

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

    Welcome Joy - That was an amazing story - thanks for sharing it with us.  Like Sherry said, a lot of us haven't had any SEs - some just minimal.  You will do just fine.  Don't be afraid to ask questions or share whatever thoughts/feelings you are having at the time.

    Bean - Glad you were able to get some answers and relief is coming.  All the meds we have to be on can create their own problems and sometimes it is left up to us to try and get it sorted out. 

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

    JOY//Welcome aboard so sorry we had to meet this way but you will find lots of great support here. Congratulations on the birth of your daughter... what a journey you have been on.

    Beans feel better

    Hi sherry hi Jo no pillow fight last night someone must of slipped me the happy juice because i passed out..only to wake at 1:30 with an anxiety attack and oh what a day it has been.... ugh!!!!... tomorrow will be better tomorrow will be better... i will just kepp chanting that!

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

    Tink - I know you have been going through a lot lately and we have missed you terribly.  Of course tomorrow is going to be much better you just wait and see.  There was no one on here last night.  Not a peep from anyone.  Spent the night sewing.  Tomorrow it is time to get out and clean up the gardens.

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

    Tink u have been through alot tomorrow will be better

    Was busy today. Took my 3 mike walk and stopped at a plant sale on the way home. Had lunch with a friend right after that. Came home cleaned house, took a nap and did laundry. Supper is now in the oven waiting for DH to get hm. He spent the day taking a concealed

    Handgun course

  • Ondagrow
    Ondagrow Member Posts: 349
    edited May 2011

    Hi All,

    I started Tomoxifen Monday...

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

    Joythank you for sharing your story and you will find out that everyone here is quite the same and yet different with the SE.....I had constipation and insomnia in the beginning and that pretty much went away within months.......I feel like the brain is not what it used to be and I blame Tami on that......ask away any questions as all the women here really care and will jump in to just listen or to help in anyway they can......

    Sohardbnme Welcome!  Any SE yet?

    Beans glad you are getting some answers......

    TInk how are you doing lately, I worry about you?

    Jo, Sherry, Sandee, Alicia I miss you gals and sorry I haven't been on as much as I used to be, I will return when things calm down some here.....

    Gals I am getting really worried about Jules......has anyone heard anything yet about her daughter????

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

    June & Tink - Sure miss seeing you here.

    Sohardbnme  - Welcome to the Tammi Train.  Things tend to move fast around here.  Lot of good information and fun as well.

    I am have not heard a peek from Jules - where is she? 

  • chabba
    chabba Member Posts: 5,065
    edited May 2011

    Joy and Sohardbnme - Welcome.  Hope your SE's are few and easily "doable".  I've been on the tammy train for six months now and have had several of the more common SE's.  They come, they fade away or you learn to control them.  Mine have been manageable.  May your's be so as well.

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

    welcome aboard SOHARDBME..this is a great thread with wonderful ladies.....

    June/jo....miss you ladies tooo!!1. I think i am just having a real hard time with all that has happened. Even bumping down to 10mg I cant seem to get my body to relax. I take my anxiety meds and still dont feel like i should. I guess i shouldnt expect to bounce back so fast from this last trial in my life... but i am so frustrated as i felt like i was making some progress before everything happened with my daughter... i guess one day at a time... but i tell you i wasnt this stressed out with all the bc stuff ugh!!!

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

    welcome aboard SOHARDBME..this is a great thread with wonderful ladies.....

    June/jo....miss you ladies tooo!!1. I think i am just having a real hard time with all that has happened. Even bumping down to 10mg I cant seem to get my body to relax. I take my anxiety meds and still dont feel like i should. I guess i shouldnt expect to bounce back so fast from this last trial in my life... but i am so frustrated as i felt like i was making some progress before everything happened with my daughter... i guess one day at a time... but i tell you i wasnt this stressed out with all the bc stuff ugh!!!

  • sgreenarch
    sgreenarch Member Posts: 528
    edited May 2011

    Hi, guys. Thanks for the advice, sandeeonherown. I did exactly what you said and took 24 hours off from panicking as there was nothing i could do on the wkend anyway. Decided to hand it over to God and take a breather. For the first time since july this actually worked. I am usually fiercely independent but asked hubby to help me get lab results and speak to docs from now on. (as a dr he is better at it anyway.) I was a spectacular wreck on friday worrying about these off the wall estrogen results w/o even a clue what they mean. Could be a lab error ormeaningless or nothing that bad, but i was already thinking the worst. Need to figure out how not to let a test result that i dont understand make me so crazy. We will speak to onc today, hopefully.
    Sherry, really wishing you well w your dad. I had a yr like that when my dad had leukemia 20 yrs ago. He got through it but we had some terrible times during that yr. I agree that bros are great but that the only daughter plays a special role. Hang in.
    All the best, shari

  • swanseagirl
    swanseagirl Member Posts: 393
    edited May 2011

    Hi ladies, checking in.

    Daughter had breast appointment last Wednesday. Waiting for results to come from the UW.They still can't determine if she needs a biopsy. She wants one just to rule out anything and to get on with her living stress free.

    Me, I had my first mammo since dx last Thursday. I too am waiting for the results. Radiologist said it looked OK at a glance. However, as soon as I see my results I will breathe.

    And the icing on the cake. DH broke thumb today helping unload a horse out of trailer. Spent the day in ER, then onto surgery to put pins into it and realign.  Now we are home. He has all the drugs and he won't share.  Girls I need you to come over with your pillows and give him a whack.

    My sister is out visitng from the UK so by the end of the day I'm heading for bed not my lap top.

    Hope everyone is well.

    Hugs xxxxxx

    Jules

  • swanseagirl
    swanseagirl Member Posts: 393
    edited May 2011

    Sandee, I let her skip first period so she could sleep in.  Figured she needed it.

    Plus we went to our favourite Starbucks and got venti's. Now I am broke.

    Thank you for checking up.

    Love you ladies all so much. You're my extended family.

    Hugs xxxxxxxxxxxxxxxxxxxxx

  • letterchick
    letterchick Member Posts: 10
    edited May 2011

    Hi girls. Just started Tamoxifen yesterday. Fearing and awaiting the SE's. told myself even if they arrive I will push on and pretend they don't exist. Hope that is possible. Many of you have said that joint pain is the worst. i worry about that and struggling with my job. Only time will tell. Anyone taking any good supplements that help?

    Joy, you have been through so much. So glad to hear your daughter did well through everything. Hopefully we will be w/those who have minimal side effects.  Happy anniversary...and many more! 

  • sgreenarch
    sgreenarch Member Posts: 528
    edited May 2011

    Hi Ladies, So much going on!

    To you Ladies just starting Tamoxifen and worrying about the SE's, I've found them to be bearable, really not so bad. As long as you know that others share them and that they don't signify anything serious, it's somehow really just ok. I've had joint pain (totally helped by advil and swimming,) hot flashes, a really weird rash on the top of my feet that does fine if I put moisturizer on it (?!?) and some constipation. At 50, it's hard to know if I wouldn't have had some of these same symptoms now anyway. Biggest comfort is sharing the moaning with these Ladies, knowing we're all doing it together.

     An update re my crazy high estradiol blood test results. Talked to the gyn who ordered them and he said that this doesn't signify anything terrible (like another unchecked tumor somewhere, where my mind was already going....for no good scientific reason other than nerves. ) What it means is that my ovaries are getting the message to kick up production while on tamoxifen since I'm likely premenopausal. (I say likely cause I don't know. Had a hysterectomy 3 yrs ago but kept ovaries so don't have periods and can only tell if in menopause from blood tests.) He said tamoxifen is dealing with the extra estrogen but that we should treat this anyway. Probably either chemically shutting down ovaries or removing them?(damn things are hearty. Expected at least one of my surgeries to slow them down...) Not sure if any of you have heard of an SE like this? but at least I'm calmer now. Was really a wreck since Thursday afternoon. Thanks for listening.I have an appt with him on Thursday and I'll keep you posted. I've developed high cholesterol and gallstones suddenly, too, (both of which can be caused by excessive estrogen, I think.) I grew a gigantic fibroid which necessitated the hysterectomy and was also probably estrogen driven. I have a theory that  maybe I produce estrogen in overdrive, so I'm glad that I may be getting to the bottom of something.

    Joy, glad your daughter did well. You sound quite brave. I'm relatively new here, too, and we've found a nice supportive group of women. Jules, thinking about you as you wait for your mammo results. I had one at 6 mos and it was ok, but it wasn't easy to be back in that room. LOts of deep breathing for us.

    All the best, Shari

  • cp418
    cp418 Member Posts: 7,079
    edited May 2011

    http://www.sciencedaily.com/releases/2011/04/110406085050.htm

    Fish Oil Boosts Responses to Breast Cancer Drug Tamoxifen, Researchers Find

  • joystars
    joystars Member Posts: 95
    edited May 2011
    Hmmm interesting to read about the fish oil. Since I moved to Norway three years ago I've been told about the marvelous and good healthy effects of taking a daily dosis of cod liver oil.

    Here they sell it in different ways at the supermarket: the more adventurous one is having a big daily spoon of that smelly oil or getting the "lemon" flavoured version. But also for not oily fishy smell lovers, there are capsules :)
    Norwegians have a saying about it: you should take it during all the months that have an "R" in their name (this means almost all year round!) in order for it to work. I've been doing so and I am really sure that taking it everyday helped me and my baby to be healthy despite the cancer thing when I was pregnant last year.

    Today when having my first Tamox pill ever, I also added one capsule of cod liver oil as recommended by my oncologist (a Norwegian genius that has an excellente reputation). Funny that now I'm reading this article! Thanks for sharing!

    And also many many thanks to my tamoxifen sisters for such a warm welcoming and words of support.

    Hoping everyone is enjoying the Sunday!
    Joy

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

    So much going on here !  Jules hoping and praying for good results for you and your daughter, sorry about hubby's finger.

    To all the new ladies, Welcome !!  You have found a wonderful place full of compassionate, smart, funny women to ride this train with you ~

    I had my surgery Friday, am really quite sore and swollen but plugging along.  I hate the pain meds so I am taking just tylenol or motrin.  Made it through my daughter's Junior Prom pictures yesterday.  (about 80 kids on our lawn)  They all looked beautiful.  That's it from me for now.

    You girls with the sick daddies HUGS ~ Tink how is your god daughter doing??? 

    Thinking of you all on this beautiful Sunday !!!

    :)
    Alicia

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

    Alicia - Best wishes for a speedy recovery.

    Jules - Glad to see you back on here once again.  Hoping for good results for you and your daughter - sorry about hubby's finger.

    Not really talkative today - just found out on Sunday morning of all things that our assistant managers are quitting in a couple of weeks.  GREAT!  Will have to start doing the work of two people.  UGH!  Just what I did not need right now.  Sorry!  I am just venting.  I am a little upset about this and it was a total surprise.

  • Beanius
    Beanius Member Posts: 1,697
    edited May 2011

    Jo - thanks so much for the well wishes! It is def getting better each day now, whew!

    Tinkertude - Thanks for the well wishes, much appreciated. So sorry to hear of waking up with an anxiety attack, I hate it when that happens. Just before this rash thing, my DH woke me up because I was moaning and carrying on in my sleep, I was having awful nightmares so was glad he got me conscious. I do hope today will be better for you!

    Sherry - Sounds like you did have a busy day, how nice to get to a plant sale. What kind of plants?

    Sohardbnme - Hi and welcome! I have been on Tamoxifen for 4 months and mostly doing okay...mostly what would happen going thru menopause any way, hot flashes, night sweats, moodiness, wanna bite someones head off sometimes - just kidding. I sure hope Tami treats you well!

    June - thanks for the well wishes!

    Chabba - I think I will be back in your neighborhood within a week.

    Sgreenarch - glad you are taking a little time to step back and take a deep breath, I'm glad you got some answers on the blood work. I know how every little thing can send me right into panic again. I'm sure wishing you the best! I will be having the laproscopic ovary removal next March, I was told it's an outpatient procedure with short recovery and will bring my chance of ovarian cancer to zero. This is another cancer in my family.

    Swanseagirl - best wishes to you and your family, sounds like a lot going on, wishing your DD is okay and that your mamos turn out clean (my next set is this month...) and so sorry to hear about your DH

    Letterchick - I have been doing a lot of mind over matter to stay on Tami, it's been 4 months and mostly all is okay, wishing you an easy time with it! I haven't had joint pain, I do take calcium and vit D.

    Cp418 - thanks for posting the fish oil study.

    Joy - My grandfather was from Norway, he passed before I was born, but my mom had all good stories about him.

    Alicia - glad you got through the surgery okay, that's funny, I hate the pain meds too and never took them with my 3 surgeries last year, just took Tylenol a few times. Glad you made it through the prom photos too!

    Jo - vent away! That sounds so hard to have to pick up the work of two people. I would be upset too. Is there any way to replace the two who are quitting?

    Hugs to all and have a great day! ~Beans

  • jo1955
    jo1955 Member Posts: 8,543
    edited May 2011
    Beans - We will replace the two that are quitting.  What pisses me off is I found out they made the decision to leave 10 months ago and never said anything about it until this morning.  On a Sunday for gosh sakes.  This was after they told us they would be here for quite awhile.  This is not the first time this has happened.  The problem is some people these days don't want to put a lot of effort into working but expect the paycheck.  The job here is not an easy one - I know that.  Hubby and I have been doing it for almost 12 years.    With the job market the was it is - I am just grateful to have a job.  Unfortunately, can't retire yet - sure wish I could.
  • Beanius
    Beanius Member Posts: 1,697
    edited May 2011

    Jo - I hear you on some people not wanting to work...we have been trying for 3 years to find a builder to do our mountain cabin...we are finally just going to do it ourselves - well my DH is and one of our friends we will hire. I will be the gofer. We aren't retired either so we are also glad to work!! That is frustating to find out on Sunday and when you could have had much more time to prepare. That sure sux.

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

    JO...VENT AWAY!!!. THat would be frustrating...hugs

    Beans...thanks... I know the dreams are so vivid on Tamoxifen too arent they... its just keeps on giving and giving lol!

    Alicia glad you are doing well from your surgery that is great news... pics were beautiful and you look great as well! thanks for asking about mu god daughter she is doing much better and is home now....

    welcome any new Tammy ladies!!!!

    Hugs

    June sherry, ECG.... miss you ladies too!!!!!

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

    Thanks Ladies - Getting the news so early this morning really got me downn today.  Hubby told me they had made the decision to leave 10 months ago and just decided to spring it on us now.  They will still be around for 3 weeks and the way I feel right now - I just wish they would not bother coming to work.  I don't know how I could have a decent attitude but it will somehow all work out.

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

    joy- welcome....wow!! You are a trooper!

    Tink- 24 hour rule sistah! it will get better...

    Jules- excellent...venti's and skipping first class.....bonus indeed my dear!!!

    alicia- When I had surgery, my BS old me to take advil with a tylenol chaser...essentially, 2 of one at 3pm and then 2 of the other at 6pm....worked like magic. I had my pain med pscript filled but did not take a single one

    Jo- major drag.....hopefully this means they are paving the way for two more spectacular people to show up and work along side you!

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

    Sandee - I am instituting your 24 hour rule.  With the recent events, I can't look too far into the future and really have to take one day at a time or I will go crazy.

    You Tammibabes are absolutely wonderful and I love all of you.  Thanks for letting me vent today.  I try to keep everything so positive but sometimes.....well, you know.

                                      

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

    i love the pic Jo!!

    yes yes the 24 hr rule... i need to remember that for sure... breathe in and breath out i keep forgetting t o do that too... thank God for you ladies... i am trying to take one day at a time I have never been evry good at that, however, i am beginning to see if i dont i have no chance of relieveing this anxiety...thanks ladies

    hugs to you!!!!

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