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Bottle o Tamoxifen

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Comments

  • j414
    j414 Member Posts: 58
    edited December 2009

    Caroline,

    I will keep you posted about the study results. I'm currently taking tamox 20mg and interested to know (as an intermediate metabolizer) how much of it is being metabolized to endoxifen. I have an appointment with the head researcher on Monday.

    My onc was adament that only the very occasional glass of wine was okay. Although I had a couple of glasses last week and will probably have a couple of more in the coming weeks, I was early onset which already places me at significant risk for a recurrence, so 11 months out of the year I will be dry.

    As an aside, Banff is one of the most beautiful places I have ever been and around the time I was diagnosed we were finalizing a trip to Emerald lake. We've been to Lake Lousie, but friends told us Emerald lake was a lot less touristy - we're hoping to get there in the spring when it's not so cold. Have a great time in Mexico - this is the best of the year to go, perfect weather, crystal clear skies!

  • j414
    j414 Member Posts: 58
    edited December 2009

    Caroline,

    I will keep you posted about the study results. I'm currently taking tamox 20mg and interested to know (as an intermediate metabolizer) how much of it is being metabolized to endoxifen. I have an appointment with the head researcher on Monday.

    My onc was adament that only the very occasional glass of wine was okay. Although I had a couple of glasses last week and will probably have a couple of more in the coming weeks, I was early onset which already places me at significant risk for a recurrence, so 11 months out of the year I will be dry.

    As an aside, Banff is one of the most beautiful places I have ever been and around the time I was diagnosed we were finalizing a trip to Emerald lake. We've been to Lake Lousie, but friends told us Emerald lake was a lot less touristy - we're hoping to get there in the spring when it's not so cold. Have a great time in Mexico - this is the best of the year to go, perfect weather, crystal clear skies!

  • DebbyM
    DebbyM Member Posts: 30
    edited December 2009

    Good Morning Everyone! 

    Hey Trish, what side effects were you having that you are going off of tamox?  And, how soon did you get them?  And, what is a TAH-BSO?  Sorry, I don't know what that is.   And, you will be on Al's, like Harley then?

    Weight loss?  Now that would be nice.  I think it lists that somewhere in the information.  But, weight gain is also listed.  Has anyone lost or gained on tamox?

    Susie, you gave me my morning chuckle!  Thanks!  Your husband sounds like a real sweetie to get that generator.  But, I guess he benefits from it too.  I would love to live in the country.  You are lucky.

    I drink more beer than wine.  But, I am not stopping drinking either.  To prevent cancer, according to the stats and surveys and doctors, you would have to live in a bubble.  Seriously  lol

    I quit smoking years back, so, I am thankful for that.  I have been surprised by how many still smoke after bc.  I know it is hard to quit, I know.  I wish all of them good luck.

    Good to see you feeling better Bonnie. 

    Trish, feel better.

    Harley, are you there yet?  Is today the last one?

    Debby

  • DebbyM
    DebbyM Member Posts: 30
    edited December 2009

    Good Morning Everyone! 

    Hey Trish, what side effects were you having that you are going off of tamox?  And, how soon did you get them?  And, what is a TAH-BSO?  Sorry, I don't know what that is.   And, you will be on Al's, like Harley then?

    Weight loss?  Now that would be nice.  I think it lists that somewhere in the information.  But, weight gain is also listed.  Has anyone lost or gained on tamox?

    Susie, you gave me my morning chuckle!  Thanks!  Your husband sounds like a real sweetie to get that generator.  But, I guess he benefits from it too.  I would love to live in the country.  You are lucky.

    I drink more beer than wine.  But, I am not stopping drinking either.  To prevent cancer, according to the stats and surveys and doctors, you would have to live in a bubble.  Seriously  lol

    I quit smoking years back, so, I am thankful for that.  I have been surprised by how many still smoke after bc.  I know it is hard to quit, I know.  I wish all of them good luck.

    Good to see you feeling better Bonnie. 

    Trish, feel better.

    Harley, are you there yet?  Is today the last one?

    Debby

  • prayrv
    prayrv Member Posts: 362
    edited December 2009

    Debby,

    My se's (hot flushes, leg cramps, insomnia, mild weight gain -5 lbs,) started to appear within 2 weeks of taking tamox.  They have since gone away (except the weight LOL).  The problems that I am having have to do with an increased uterine lining, heavy periods (made worse), fibroids, polyps and ovarian cysts.  Tamox binds to estrogen receptors in breast tissue cells in women so that estrogen will not fuel the cancer cells.  However, it does act as an estrogen stimulator in the ovaries, so that the ovaries produce more estrogen - therefore I have an ovarian cyst that just won't go away and die, and my endometrial lining has tripled in size.  My periods are extremely heavy and tamox just aggrevated that situation.  Other than the uterine issues, I have tolerate tamox just great.  I do think that everyone has different se's, just as everyone has different bodies and different cancer dx's.

    Hugs to all,

    Trish

  • Alexis2u
    Alexis2u Member Posts: 20
    edited December 2009

    Trish, I am so sorry that you are having these problems.  I had heard and read that this could happen because of tamox. 

    I appreciate your explaining it. 

    LMAO at the new pic from Susie! 

    I love this site and all of you! 

    Gotta go

    Lex

  • bcamnb
    bcamnb Member Posts: 334
    edited December 2009

    prayrv -  what is a TAH-BSO???

  • bcamnb
    bcamnb Member Posts: 334
    edited December 2009

    Hi 414,

    Yes, we are in God's country - 1 1/2 hr drive from my house to Banff. That said, I CAN do without the cold and snow and blizzards right now - thus the week in Mexico.

    Sure hope you get up here this spring. It IS a gorgeous place.

    I am also interested in your onc's comment about the wine. Us IMs really do need to take extra precautions. But I figure one glass of red wine a week....?????

    I love NY BTW. My daughter worked in NYC (lived in NJ) and the twice I was able to visit her were special. Take care

  • prayrv
    prayrv Member Posts: 362
    edited December 2009

    TAH-BSO

    Total Abdominal Hysterectomy - Bilateral Salpingo Oopherectomy

     Basically - all of it comes out.

    :)

  • bcamnb
    bcamnb Member Posts: 334
    edited December 2009

    Hey prayrv,

    BEST WISHES!!!

    look after yourself

  • Jeanne_D
    Jeanne_D Member Posts: 50
    edited December 2009

    A very fast moving site anymore and such great bc supportive survivors on now!

    I don't know what TAH BSO is either Trish.  I assume some test or procedure?

    My sis lives out west and it is so beautiful out there, even with all of the snow she gets.  It is truly God's Country!  Love the mountains, the creeks, everywhere you look, you are overwhelmed with the majestic beauty.  Love it out there!

    No upset tummy anymore Debby is wonderful!  Our onco's sometimes don't tell us when to take it or different times to take it, with food or without, split in half of anything.  I would like to slap mine sometimes.  And, I just might.  LOL

    In a hurry today Lex?  Whazzup???

    Anyone having troubles with neck aches on tamox?  Or, is it just me?  I have had a stiff neck for a couple of days now.   Been taking Ibuprofen for it, but, it is still here.

    Susie, a generator?  LOL  A girl with few needs!

    Jeanne

  • prayrv
    prayrv Member Posts: 362
    edited December 2009

    Thanks Caroline!

    I had a c-section with my last child - it's sorta like type for the recovery.  Except for the instant surgical menopause.  I would have like to go through menopause normally, but it is, what it is and I'll go on from there.

    Trish

  • Harley44
    Harley44 Member Posts: 2,126
    edited December 2009

    Hello to all the Tamoxi train passengers, 

    Susie,

    Thanks for the pics!  The cat drinking beer was so funy!  ROFLMAO!  and the cat with the styrofoam peanuts was so funny too!!

    Jeanne D,

    Surprisingly, my ears feel MUCH better, thanks!  So, I didn't mention it to my onc today.

    Oh, I had my share of problems with Tamoxifen, due to the same issues that Trish has been having.  I started having bleeding issues about 7 months after starting the Big T, and had a trans vaginal U/S, which showed that the lining has thickened, and ... there were some kind of growths in there, too...  so my gyn did a D & C, to clean all this stuff out.  I seem to be ok since that happened, but it was a horrible experience...  that D & C really hurt!  I was SO CRAMPY!! 

    Yes, I saw my onc again.  He gave me a Rx for ....  Femara!  I asked about Femara, and he said he had no problems with whichever AI  I wanted to take.   Also, he doesn't care WHEN I start taking it, so I will probably stay on board til Jan 1st, then I'll jump off this train, and start taking the Femara.  Still kinda scared of taking an AI...

    But, my onc, FINALLY told me... after much prodding from me:

    I asked him, even though I know there are NO guarantees...  but, maybe, just maybe, this bc maybe it WON'T come back... EVER!   I told him... I NEED TO HEAR THIS FROM YOU, because YOU are my CANCER DR!!!    He usually has NO patience for me, but today, he was in a pretty good mood. 

    I don't know if any of the rest of you get your onc. to tell you stuff like this, to encourage you, and make you feel better.  Mine NEVER does... 

    Trish,

    I'm so sorry you are having such problems!!  When is your hysterectomy scheduled??  So, will you just wait til your Tamoxi pills are gone and then switch to an AI?   I still have a lot left over, so I think I'll just wait til Jan 1st.  It'll make it easier for me to remember WHEN I started taking the AI... 

    You are right... We started Tamoxifen at about the same time, and now it looks as if we'll be hopping off this train soon, and starting an AI.  I'll be taking Femara.  

    Let me know how you're doing, ok??

    Hugs

    Harley 

  • Susie09
    Susie09 Member Posts: 225
    edited December 2009

    I will continue the pics since everyone says they love them and they make them smile.  I just didn't want them to annoy anyone.  If they do, let me know. 

    Wishing you the best of luck Trish with your upcoming surgery.  We are all here to support you in anyway that we can. 

    So glad your ears feel better Harley.  I was worried that you had an ear infection or even a sinus infection can do that to you.  Both of those can be very serious.  So, you will start Femara after the first of they year?  You will still come here and let us know how you are doing I hope.  There is no reason that I hope you wouldn't.  We want to know how you are. 

    I don't like my oncologist.  I really need to get a new one.  He is very hard to understand, doesn't talk much, no personality really.  I just don't feel good about him like I do with my other doctors.  I love my rads oncologist!  He is the best.  Everyone has been so great to me, so kind, so patient, so helpful.  He hasn't done anything wrong exactly, but, he really hasn't done anything right either.  Does that make sense?  lol

    Susie

  • kcl65
    kcl65 Member Posts: 741
    edited December 2009

    Whew! I need to get on here more often, you guys move way to fast!  LOL!!

    Caroline and Jeanne, I do enjoy my glass of wine and as you say Jeanne having less does make you enjoy it more.

    Susie~ I can't imagine needing a generator, that means too much inclement weather and as I said before I am a severe winter weather wimp!  LOL! (Although I must say I love wearing my sweaters!)Yes, I do enjoy a good Riesling, but the dryer ones.  Pacific Rim does a really nice dry riesling.

    Trish~ All the best for your surgery!  

    I am headed to SanFrancisco tomorrow for a girls weekend with a couple of dear friends and cannot wait!! YaY!! My hubby will hold down the fort here...what a man! LOL! 

    Take care everyone and have a wonderful weekend!!

    Kelly :)

  • Alexis2u
    Alexis2u Member Posts: 20
    edited December 2009

    This is not a bc or tamox question, but, how do you get something written above your diagnosis in your signature here? I have seen several that have their name or something.

    Now, about tamox, I am still tired.  Did anyone else have this when they started tamox?  And, did it go away?  I have also been getting some leg cramps.  Haven't tried the soap yet. 

    I love your pics Susie, don't stop them.  We need humor around here.

    Harley, congrats!  Off to better things!  You are the graduate now?

    Everyone have a great weekend too!  What is everyone doing?

    Lex

  • DebbyM
    DebbyM Member Posts: 30
    edited December 2009

    Have a great weekend Kelly!  Sounds like fun. 

    Don't stop the funny pics Susie!  They brighten the place up.  Laughing

    Wishing you good luck also Trish with your upcoming surgery.

    Putting our xmas tree up this weekend.  It is a lot of work.  lol  My husband is doing most of it now, but, I have to help later.  Undecided  I think I need to put on some xmas music.  Maybe, that will put me in the mood more.  lol

    Doing great on tamox so far.  Upset stomach is gone since I take it at night.   I keep waiting for something else to happen.  We will see. 

    How is everyone else?

    Debby

  • Susie09
    Susie09 Member Posts: 225
    edited December 2009

    All I can say is P U!    Yell

    Have a great weekend tamoxifriends!   Love, Susie

    Some days you step in it, some days you don't

  • Jeanne_D
    Jeanne_D Member Posts: 50
    edited December 2009

    And, all I can say is HAHAHAHA  Susie!  Funny pic!  Thanks!

    It is cold here today and we are suppose to go out to eat tonight with some friends.  I don't want to. LOL  Oh well, I guess I will survive.  I just can't seem to get warm anymore.  Not for sure why.

    Enjoy your weekend tamoxitrain women!

    And, with my WINE, I will be having some HOT coffee! 

    Jeanne

  • Harley44
    Harley44 Member Posts: 2,126
    edited December 2009

    Lex,

    Thanks for the congrats.   Oh, I am VERY TIRED, too!  I asked my onc what to do about the fatigue, and he never answered my question. 

    Susie,

    Funny pic!!   LOL

    Yes, I'll still hang around here.  I love you gals, and want to stay close, to see how you're all doing.  One day, you'll be saying...  I only have 2 weeks left to go...  and the countdown continues!

    Hope everyone has a great weekend!!

    Harley

  • vivvygirl
    vivvygirl Member Posts: 171
    edited December 2009

    Harley,

    I know how you feel....I am very tired too.

    I think I have forgotten how not to be tired.  It really annoys me because I am 45 and should not be like this.

    Congrats on you making it through the tamoxifen journey.  Will see you there in about 4 years and 3 months.

    Big hugs to all the other travellers

    Viv

  • Harley44
    Harley44 Member Posts: 2,126
    edited December 2009

    Viv,

    Thanks for the big Congrats on finishing...  I have a script for Femara, and will be starting it on Jan.1st...  so I'll probably be riding that train for another 3 years...   sometimes, it seems that it NEVER ends!!

    Susie,

    I meant to tell you that I have had issues with my onc, too.  He never tells me much, so I have been just making a list of questions and bringing it with me to my appts.  Sometimes, he acts like they are stupid questions, and sort of laughs at me.  Usually, he just reads them and doesn't answer any of them.  Well, he will answer some of them...

    I guess we are getting along alright now.  He told me that I have good questions.  yea, well why won't he answer them??   I had a run in with him before I started chemo.  But now we get along.   I even gave him a hug yesterday.  I guess there's hope for us...

    Harley

  • Hannahbearsmom
    Hannahbearsmom Member Posts: 266
    edited December 2009

    Susie: I love the pics too and look forward to seeing them each day. They always make me smile!

    Alexis: I don't know how to add sayings above the diagnosis line but I have been wondering too...

    All the Christmas decorations have been up since the weekend after Thanksgiving but I have a bunch of presents to wrap up and ship out. My shopping is pretty much done. Thank goodness!

    Everyone try to stay warm and dry this weekend Smile

  • CatbirdC
    CatbirdC Member Posts: 235
    edited December 2009

    Hi To All Tamoxitrainers,

     I'm trailing along here.  I heard that story about the alcohol on CNN where they said if you drink more than 3 or 4 drinks a week you have a 30% increased risk of bc coming back.                        Wouldn't that then mean we have a 70% chance that it won't?

    Oh those cat pics are something else Susie!  I've actually had cats that would look at their paws exactly like that when they got something on them.  Too Funny.

    It's 35 here but it feels much colder.  I think those days when we had the freezing temps in the teens and the high winds just gave me bone chill.  LOL

    Hope everyone is good to go !!!!!!

    Bonnie

  • Alexis2u
    Alexis2u Member Posts: 20
    edited December 2009

    Just a quick fly by here! 

    HAHA at your latest funny pic Susie!  I love them too!  Please keep posting them.  Are your headches still gone?  Exept if you drink too much?

    Hi Bonnie!  So, should we really try to watch our consumption of alcohol? I still drink.

    I haven't done my xmas shopping yet.  Ugh  Anyone else?

    Congrats to you Harley!  Please still post here, we would miss you.

    Vivvygirl, isn't being tired awful?   I wasn't like this before tamox.  So, I think it has to be it.  What vitamins are you on?  Maybe, I need to take more.

    Have a great weekend Kelly.  Tell us all about it when you get back.

    Lex

  • CatbirdC
    CatbirdC Member Posts: 235
    edited December 2009

    Hi Tamoxitrainers,

    Lex~~   the daggone "tired" is definitely a Big T side effect.  I'm getting more used to it I think but it is a pain at times.  I once fell asleep here reading and my head snapped !!!!!!   That was when I hadn't been on it too long....but still.   LOL

    Most of the girls are continuing pretty much to have their glass os wine or whatever but maybe just not as much as before.  Like I said, 30% means 70 are not affected in my book.

    Harley ~~   YES do continue to post and say Hi to us.

    Susie~~  You must be at your computer looking for Kitty for Sunday picture about now.  :o)  I still have problems trying to copy and paste on here and cannot figure out WHAT I'm doing wrong.

    Bonnie

  • Brendatrue
    Brendatrue Member Posts: 487
    edited December 2009

    Hi to all on the Tamoxadventure--I have been dealing with limited energy so I tend to read the posts, respond from time to time. I just can't keep up with the pace of this thread and the other demands of my life. I remember telling Susie a while back that I had headaches shortly after starting Tamox, then being relieved that the headaches waned before disappearing. In the last several weeks I have started having migraines, and my internist thinks they are related to Tamox. Has anyone else had this problem? If so, how do/did you manage? I am still hopeful that this probable side effect will be like some of the others and just subside over time. Fatigue is still an issue--perhaps a little better--after about 4+ months on Tamox, and I now have periods of insomnia, which I occasionally address with a low dose of lorazepam at bedtime. My stretching exercises seem to manage the foot cramps pretty well, and I am planning on asking my gyn about Vit E suppositories (thanks for this suggestion!) for the unlovely and typically untimely vaginal dryness. I also am an intermediate metabolizer--still taking 20mg per day. I will check in here from time to time and continue to send wishes for healing and wholeness to you all!

  • Harley44
    Harley44 Member Posts: 2,126
    edited December 2009

    A quick Hello to all the tamoxi train riders today:

    Lex, and Bonnie,

    I'll stop by and post here from time to time.  I love you all, and want to know how you are all doing.

    Brendatrue,

    I was getting terrible hormone related migraines before I was dx'd with bc...   I still get these migraines sometimes, but they seem to have gotten better.  I am so grateful because they were just terrible!  Hope you can get some relief.  I take Relpax for my occasional migraine headaches, and they seem to help.

    Hugs to all,

    Harley

  • vivvygirl
    vivvygirl Member Posts: 171
    edited December 2009

    Lexie,

    I really hate being tired all the time and some days it really gets me down.  Had only surgery to rid the cancer and didn't have to have rads or chemo...so the tiredness must come down to tamoxifen.

    Yesterday was doing some Christmas baking with my DD.  Normally I am like the duracell bunny but half way through got so tired that I had to have a nap for a while.   This really does upset me because this is not who I am or was!!!!    Just tired of being tired.

    The vitamins that I take are a multi, fish oil, evening primrose, vitamin d and supposed to be taking iron but ran out and haven't replaced the bottle.  I know that the tiredness is not from low iron because I know how that feels and it is not the same feeling.

    Hugs to all that need them

    Viv

    http://www.kuul.dk/billeder/logos/kanin_web.jpg

  • kcl65
    kcl65 Member Posts: 741
    edited December 2009

    Hi All,

    I'm back from my trip to San Francisco adn had a blast with my girlfriends!  Lots and lots of shopping and Union Square looke lovely!! It rained a lot, but we were in the stores so it didn't matter! 

    Lex I'm trying something out to see if I can get the line above the dx...it may not work, but we'll see!

    Susie~ Thanks for the smile again!

    I have had a little bit of insomnia over the last month and didn't connect it to Tamox, but it could be that!

    Viv ~ What does the evening primrose oil do? Have some good friends in Aussie and family in Tasmania!

    Have a great week everyone!

    Kelly :)

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