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Bottle o Tamoxifen

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Comments

  • dcbkc
    dcbkc Member Posts: 137
    edited February 2008

    Virginia,

    I'm in Kansas City area.  Krispy Kreme is big here but it's not the same as Dunkin'!!  I would go over there late and get a raspberry filled donut from my roommate who worked there.  OY -- SO GOOD!

    I like your idea of a pedometer. Don't just wear it at lunch though.  Count every step! That's motivating!  I'd like better weather!!  Don't think I'm going to get that.  I've been able to maintain my weight on the tamox.  That's a good thing -- I lost 10+ while on rads.  That was after losing 8 on my own before dx.  So about 20 over a year.  So staying the same is an accomplishment for me.  But the joint pain...!

    So what part of NJ are you in?  My oldest friend -- since we were 3-- is in southern Jersey.

    Have a happy day!

    D

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited February 2008

    Good for you with the weight loss!  You lost 20 and I FOUND it!  LOL  I will wear the pedometer all the time.  My office building is REALLY big and I work in one end and walk to the other for coffee and such, so the steps do add up...

    I am in Northern NJ near NYC. 

    Sorry you have the joint pain.  I don't have that.  Although, I am 11 days late for my period!  That seems weird to me now...  I was on chemo-pause from May 'til Oct, got normal every 28 day periods Oct, Nov, Dec, Jan, and now NADA...  (And, no, there is no chance that I am preggers...heaven forbid).

    Does anyone know if Tamox stops the cycle??

  • dcbkc
    dcbkc Member Posts: 137
    edited February 2008

    Virginia,

    I just got my first refill and really read the fact sheet enclosed.  One S/E that was listed was irregular period.  Last month, mine came 5 days EARLY! That really sucked. I was late the month before.  I used to be able to set the calendar by my cycle -- no way now!

    My husband used to go to Edison every now and then.  Won't be now -- the plant is being shut down.  But he goes EVERY where else.

    D

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited February 2008

    Lynn - I hope your onc gets back to you quickly.  I hate the emotional rollercoaster of all this.  I don't even remember what I'm supposed to feel like, it's been so long. {hugs}

    Virginia - I'd love a Dunkin' Donuts car!  There aren't any near where I live, either.  I hear their coffee is excellent.  So, you're tired, too?  I was thinking that maybe it's due to the beta blocker I'm on, but maybe it isn't.  And, I was just thinking today that I was going to tell my cardiologist that I want off it because it's too confusing to know which med is causing which side effect.  All I know is that I'm extremely irritable, tired, impatient, and dealing with terrible dry mouth.   My mouth wasn't this dry even during chemo.  Crazy!  I hope you get your period soon.  It's weird how it disappeared like that after coming back so regularly.  Every few weeks mine feels like it's coming back, but doesn't.

    D - I lost weight on rads, too.  My rad nurse was not happy about it, lol.  I gained it back, but then started Tamoxifen and lost my appetite for a month or so.  My appetite eventually returned for the most part, but my scale broke so I have no idea where I'm at.  I'm with you...if I can maintain, then I'm doing good.   Donuts with champagne will help!  lol  And, visiting the Starbucks car regularly. 

    Take care all,

    Cynthia 

  • yellowrose
    yellowrose Member Posts: 181
    edited September 2010

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  • dcbkc
    dcbkc Member Posts: 137
    edited February 2008

    Cynthia,

    Now that you mention it, I lost my appetite too right after I got  on this train.  It was so close to finishing rads -- 4 weeks --- I just thought it was more of the same.  Even though I do weigh myself most mornings, the way my clothes fit is what I really look at.  I'm very visual!

    I love your idea of donuts with champagne though!! That would be an interesting combo!

    I have my first follow-up mammo & U/S on Monday. I'm getting a little anxious about that.  But, hopefully, all will be clear. That way when we go to Palm Springs next month, we're going to have some champagne to celebrate -- I hope.

    Texasgirl--

    The world is looking out for you!  You sound like you'll bowl us over! In the meantime, stay on board and have some donuts with the rest of us -- or whatever your favorite is!

    D

  • wishiwere
    wishiwere Member Posts: 934
    edited February 2008

    I'm really sorry ladies, if I've asked or someone else has these questions, but..... 

    1) what is normal protocol for going on tamox?  Do they do baseline U/S, or not? 

    2) Does anyone know if this test for CyP2D6 is available to see if you metabolize the tamox?  My onco thought it wasn't yet available, but I was sure others of you had this done? 

    3) Anyone with a site on info for blood blots while on this stuff?  I have an aunt who has a genetic thing with them and has had leg clots, and a little sister that doesn't have the genetic thing, but has had lung clots like 7 times over the years.  So I am concerned.  Both are on heperin for life. 

    Any suggestions out there?

  • betsy13
    betsy13 Member Posts: 18
    edited February 2008

    Hi Virgina,

    How about a Chocolate MartiniKiss I'll meet you there.....my favorite is an electric Pomegranate martini....so "healthy" tasty and prettyCool

    Betsy

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited February 2008

    Wishiwere - I'm afraid that I don't know what your first question is asking.  Do you mean from a gyn standpoint?  If so, I made an appt with my gyn to discuss my situation and he said he would do a baseline u/s when I have my yearly exam, but the research doesn't support doing them more often unless there are symptoms.  As for the 2D6 test, it's been available for a little over a year, I think.  I don't have any specific info on clots and Tamoxifen, but have you thought about aspirin therapy?  I know it's important to stay well hydrated and avoid long periods of not moving your legs. 

    D - I hope your follow-up mammo and u/s goes well.  I only got a mammo this time, no u/s.  I had it the day after I finished rads.  It smarted a bit on the rad side, lol.  The tech showed me my scan on the computer and went over it with me.  It helped me feel less anxious about it.  

    Cynthia 

  • LottaQuilts
    LottaQuilts Member Posts: 10
    edited February 2008

    Well, I'm well into my second bottle and still no SEs.  I don't know whether to be grateful or concerned.  Maybe I'm not metabolizing it?  Something to ask my onc. at my 3-month check up.

    Is the CyP2D6 test something that insurance companies generally cover?

    Abbi

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited February 2008

    txgrl01- My onc asked me when my annual gyn exam was (back in Oct) and she sent me off...  The gyn called for the ultra-sound of the pelvis because she "felt something."  Talk about a major FREAK OUT.  She then proceeded to call me on my cell when I was on vacation in Vegas saying there were multiple cysts and this shouldn't be on Tamox and blah blah blah.  I was standing outside the Wynn Casino talking to my sister SOBBING so hard that a bellhop asked me if I was ok.  He probably thought I lost my house!  Anyhow, I ended up having an MRI and that also showed lots of cysts...  Another follow up US which showed the cysts in different places.  Soooooooooo, short story long, I think I'm just cystic, but they never knew it b/c I never had a test before.  My onc said the gyn's usually have a freak out after BC and are ultra cautious w/ the ovary testing.  She said it takes them a few negative tests before they feel comfortable.

    wish/Abbi- My onc's answer to me when I said I had very few SE's from Tamox was "you're lucky."  I haven't asked her about the test...I see her on 3/11/08...

    Need to have a follow-up breast MRI, but am supposed to call the hospital on the first day of my period...  Maybe THAT's why I'm not getting it....all subconcious/subliminal stuff...  LOL

    BETSY!  I LOVE chocolate martinis!  I will DEFINITELY meet you in the bar car for one (or more) of those!!

    d- will they tell you right away WHEN your mammo is ok??  My place did.  That was a relief.  Although, a little unnerving when they said, "we need another picture."  UGH.

    Ok, sorry for the lonnnnnnng post...

    Virginia

  • yellowrose
    yellowrose Member Posts: 181
    edited September 2010

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  • awb
    awb Member Posts: 213
    edited February 2008

    for those that are not having many SEs from tamox--that does not mean it is not working.  My mom took tamox and had little to no SEs and is now a survivor of over 21 years without a recurrence--so to me, that says a lot.  I've been taking it almost 4.5 years and am also doing very well with minimal SEs.  My onc has never even mentioned that test and with only 8 months to go on the tamox, I'm not going to bother with it.

  • Blinx
    Blinx Member Posts: 82
    edited February 2008

    Virginia -- it's Girl Scout Cookie time! Load up on thin mints and those yummy peanut butter and chocolate patties...yummmm!

    My grouchiness from last week seems to have left me, for now. I too started taking tamox at night, to see if the symptoms lessen. So far the only constant has been a pressure, like mild cramps, and even that is not always there. But, my rad-onc said real symptoms might not show up until I've been on it for 2-3 weeks.

  • JapanLynn
    JapanLynn Member Posts: 211
    edited February 2008

    Good morning, ladies--

    My question this a.m.--how long do I wait for a reply from my onc before faxing the same question again?

    My fax should have been waiting at the office when they got there on Mon.  It's now Tuesday night NY time...while I understand that he has a big, busy practice and it might take awhile for him to respond to my question, I asked on the fax cover sheet for someone in the front office to email me that the fax had been received and put in the dr.'s "respond to" pile...no email.

    I realize that his other patients have far bigger problems than mine, and people sitting in front of you get priority over those "on paper", I'd still like to know that I'm somewhere in line for a response.  Am I being too impatient?? 

    Just started my 2nd 3-mo. supply of tamox., and ordered my next prescription from Medco.  I'll be set for awhile.  My onc wants to do the metabolizer test on me this summer...didn't realize it probably wouldn't be covered by insurance.  Anyone know how expensive it is?  If it's anywhere in the ballpark of the oncotype test, I think I'll pass and take my chances.

    Please pass the chocolate martinis...sounds like just what the dr. ordered. :-)  Take care, everyone...

    Lynn

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited February 2008

    Blinx- lol....i have 2 nieces that are GS...I already orderd 2 boxes of thin mints plus some others!!  Embarassed

    Txgrl- thinking of you and your US and hop all comes out ok!! 

    Lynn- squeaky wheel gets the oil.  You can plead and hope they are compassionate and say you are half-way 'round the world and that it's hard for you to communicate being so far away and that you would REALLY appreciate a reply, etc. etc. etc...  Hope they respond to you soon.  I know that my onc's office is INSANE, but still, they have a lot of people working there...  SOMEONE should be able to get back to you. 

    Chocolate martini....you all are making me want one.  Best I can do is a handful of M&M's in a martini glass for now...  LOL

  • betsy13
    betsy13 Member Posts: 18
    edited February 2008

    Hi All,

    Is it OK to have martini's with Girl Scout cookies or is that just WRONG????.....I will have to look it up in my "old" girl scout handbook.....come to think of it I think I am exempt, since I never won an award for selling the most.....and then got in trouble in crafts for making an ash tray from clay:)....Oh well at least make sure you are not using a martini to wash your tamoxifen down:)

    Betsy 

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited February 2008

    Betsy - "an ash tray from clay" made me chuckle.  My daughter became a Daisy Girl Scout this year and I can't wait for those cookies to arrive.  The new lemonade ones are to die for.  Cookies are a breakfast food, right? 

    Lynn - I agree with Virginia, it can't hurt to fax them again since they didn't respond to your request to let them know they got the fax.  Who knows...they could have been out of paper.   As far as the cost of the 2D6 test, DNA Direct charges $300, but they don't offer it to premenopausal women.  I think most places charge between $200 and $300.

    For those of us who haven't had the 2D6 test yet, there is good news.  According to this article,  http://www.medscape.com/viewarticle/408606_6 it should be possible in the next couple of years to have your 2D6 status determined in your doctor's office.  Of course, some of us may opt to do it sooner or not at all. 

    Cynthia 

  • GardenGirl65
    GardenGirl65 Member Posts: 22
    edited February 2008

    Hi Virginia ~

    Sorry about your dad. It's a tough generation we live in, isn't it? We're trying to take care of our kids and our parents and then this BCBS (breast cancer bull shit) comes along and pokes us with a sharp stick. Just plain sucks, don't it?

    Thanks for the Tamox info. I'm curious as to how it will affect me. I guess if it's gets too unpleasant I can just ditch it. But I'll give it a try.

  • ashaby
    ashaby Member Posts: 200
    edited February 2008

    Hi you rabid martini drinkers and girl scout cookie eaters, I'm jealous because I haven't had a drink in 17 years, but I had plenty of good drinking years before that. A little too good... :)



    Anyone else have stiffness in pecs on the side you were radiated? I'm seeing a PT to see if we can stretch it out.



    JapanLynn, I've had depression since I was 11. Hang in til the meds kick in.



    XXXXBasha





  • dcbkc
    dcbkc Member Posts: 137
    edited February 2008

    Hey gang!

    Sorry I didn't post sooner -- computer issues AGAIN!!!!!!

    Virginia & Cynthia,

    Thanks for the good thoughts for my mammo and U/S on Monday.  Although I know that it's gonna hurt -- I'm still sore from the lumpectomy -- I have a plan to help with that.  (I still have pain meds from surgery, so I'll take them and my husband will drive.) But Virginia, you're right -- I hope that they give me some indication before I leave.  I'm getting so uptight. I cry so easily the last few days.  My husband asked if I was afraid of the pain or the results.  It's the results, hands down.

    On to better subjects -- we've had our Girl Scout cookies for weeks now!  We've already knocked out about 3 boxes!!! I love the butter cookies with tea.  A simple pleasure. Although I have to admit to you all, I've been thinking of making chocolate chip cookies A LOT the past few days.  My period must be coming - the only time I crave chocolateWink.  You guys can have your chocolate martinis -- I'll take the cookies!

    And Lynn-- I agree with the others -- the squeaky wheel gets the attention.  You can be insistent AND nice.  You need an answer and that IS their job.  You go girl!

    D

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited February 2008

    D- I always try and keep a stash in the freezer!  My one niece used to sell in the Fall and the other in the Spring...that kept a very nice even supply of Thin Mints...however, they BOTH sell in the Spring now!  :O

    Betsy- Thin Mints and choco martinis!  there's nothing wrong with a martini...any time! 

    LOL  Basha, I'm sure we can make you a non-alcoholic version so you can be part of the virtual party!!!  :)

    Lynn- hope you got thru to the onc's office.  Let us know how you made out...

    Just got my period today....40 days...oye.  Also just made my appt for my breast MRI...  Never ending dr's appts it seems.

    V

  • JapanLynn
    JapanLynn Member Posts: 211
    edited February 2008

    Thanks for the support, ladies...I'll send fax #2 today.  Yesterday was so crazy busy, I didn't get a chance to do it.  Work is the only way I can fax...no 24-hour Kinko's down the street around here. :-)

    Ah, Girl Scout Cookies!  I like the Thin Mints, but I LOVE the Caramel Delights...I can polish off a box w/ (or w/out) a cup of coffee.  So far I've resisted.  We're doing a Biggest Loser competition at school, and today is the weekly weigh-in--also Valentine's Day.  Loads of class parties w/ loads of goodies...wish me luck in staying strong!

    Interesting aside...there are two Valentine's Days in Japan.  Today women are supposed to give to men; in March it's the men's turn.  It figures here that the men would get gifts first.

    Have a good evening...I'm off to make breakfast!

    Lynn

  • JapanLynn
    JapanLynn Member Posts: 211
    edited February 2008

    Oops...forgot to respond to a couple of things above.  Basha, funny you should mention stiffness...just yesterday--and still today--I'm feeling a weird stiff/pulling sensation down the inside of my left arm above the elbow and into the armpit.  Don't know what it could be, but I'm trying not to be alarmed.  Good luck w/ your PT, and of course, we'll fix you a virgin drink! :-)

    D., good luck w/ your mammo...I'm right behind you.  I'll have my 6-month mammo-u/s on Feb. 24.  I'll be thinking of you...  Another thing we have in common is recent computer problems.  I'm typing this on my new laptop...other one wasn't dead yet, but barely breathing so I took the plunge.  Always something waiting in the wings to snatch my hard-earned $$$$, it seems.

    L.

  • dcbkc
    dcbkc Member Posts: 137
    edited February 2008

    Virginia --

    I wish I could keep a stash!  My husband would raid it regularly!  I'd have to hide them from him.

    Lynn,

    Enjoy Valentine's Day!  Why do the men get theirs first?

    I still don't have all my computer issues fixed.  I'm just trying to go a few more days.  Can't handle it right now.

    To all -- thanks for the good thoughts.  I'll keep going -- weepy but moving ahead.

    D

  • wishiwere
    wishiwere Member Posts: 934
    edited February 2008

    On this website, they claim they do the test for other docs patients, but not sure exactly that they would for BC patients from this below taken from that page.  Just an FYI, that mayo may do them?

    http://pn.psychiatryonline.org/cgi/content/full/40/10/33 

    For several years the Mayo Clinic has had a lab in which patientscan be tested for variants in genes that code for both the CYP2D6and CYP2C19 enzymes. David Mrazek, M.D., chair of psychiatryat Mayo, avails himself of these tests before putting patientson antidepressants or antipsychotics. For instance, he said,"The antidepressant paroxetine is primarily metabolized by theCYP2D6 enzyme. So if you discover that a patient is a poor CYP2D6metabolizer, you would be careful about prescribing paroxetinefor him or her and perhaps prescribe something else instead."

    "Any doctor in the country, or in the world, can send a smallsample of blood from a patient to our laboratory," Mrazek continued. "Everyday lots of specimens come in, and we send results back. SoMayo does a very good job, but there are lots of other choicesas well, especially now that any hospital lab can buy the AmpliChip."

  • Helenhsm
    Helenhsm Member Posts: 5
    edited February 2008

    Wow this is an amazing thread. I've been lurking here for a few weeks now. Great to see how different ppl are responding to Tamox. I've been on it for about 5 weeks now.  Was glad to read about the chill and then the hot flash. That just happened to me couple weeks ago. And the mood swings and feeling witchy for no reason - ugh. I tried switching from Wellbuetrin to Effexor - coz my gyn said they help w/hot flashes. Well on the Effexor my mood seemed to even out, but it failed me in the bedroom - so out it goes. I don't need sexual dysfunction. Maybe I should switch to a diff antidep coz the Wellbuetrin doesn't seem to help my mood as much. I'm hoping this is a SE that will wear off.

    The hot flashes wake me up at night periodically. Melatonin seems to help me stay asleep. I have CFS (Chronic Fatigue) so I've been on sleep drugs (Amitrytaline) and antideps for 5 years now.

    I am about to complicate matters by having my ovaries out on 2/22. We'll see what rollercoasters are next. I tested BRCA + last month.

    You people w/out SE's be happy - I'm sure it's working - you're just lucky to not have SE's. I DO hope the SE's diminish as I'm told they can. 

    I don't drink Martini's and what is a chocolate martini? I DO love girl scout cookies but can't eat them as I'm on a gluten free diet. My dd used to sell them and I always stock up for my family. But I haven't seen any this year! Hopefully I'll see them selling outside the grocery store as they sometimes do. Good thing there are some great gluten free cookies out there and I CAN eat candy so THAT works!

    Thanks everyone for sharing your experience. If there is anyone whose had their ovaries out, let me know. 

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited February 2008

    Helen - Hi, and welcome to our group.  I'm about to give Melatonin a try.  How much do you take?  I'd been taking Ativan to help me sleep, but I finally started being able to sleep without it.  Then recently, I had trouble sleeping again and started taking it again.  Well, I've been feeling really, really tired during the day and I thought it was another med I'm on, but the other night I fell asleep without the Ativan and the next day I felt like a new woman.  That's when the lightbulb finally went on and I didn't take anything the next night, and sure enough, I felt fine again the next day.  So, now, I'm between a rock and a hard place.  If I take the Ativan, I get a wonderful night of sleep, but I feel bone tired the next day.  If I don't take it, I sleep like crap and just feel like I didn't get enough sleep.  I'm a lot more patient and a lot less irritable, too.  So, I guess, the Ativan is out and it's time to find something else that works.  I know a lot of women take Melatonin so it's time to give it a try. 

    We'll be happy to stock gluten free cookies in the Starbucks car for you.  We aim to make this trip as pleasant as possible.   As for the Girl Scout cookie booths, next weekend is the first weekend they start selling (we're part of the Bay Area council) so look for them then.  

    Good luck to you with your ooph.   I hope you find the info you need. 

    Wishiwere - yes, Mayo labs performs the CYP2D6 test.  I believe that other labs/hospitals can send your blood to them to have the test done.  

    Lynn - Good luck avoiding the goodies!  I'm sorry your laptop died on you.  They sure don't last very long, do they? 

    Take care all,

    Cynthia 

  • JapanLynn
    JapanLynn Member Posts: 211
    edited February 2008

    Happy Valentine's Day, everyone--

    Well, this day has been a bust.  I weighed in first thing, and I was up a pound and a half.  WTH!!!  With that, the dam burst...wonderful Filipino butter cookies, brownies, these delicate Japanese chocolates, whatever...if it was bad for me and passed my mouth, it was history.

    Then, when I checked mail, I had a bill from the cancer center where I had my radiation...$2355 for an "experimental treatment".  It's total crap...I got the explanation of benefits before I finished treatment; showed it to the insurance lady at the center.  She looked it up on her computer and said she coded it correctly--not as an experimental thing.  I know it'll be taken care of, but how many midnight phone calls will that take??  I've already been sent to collections for a hospital bill that I tried to pay for months (long story)...it's paid in full, but I'm still getting threatening letters from a collection agency.  I hate all this petty crap...it makes me crazy.  Big sigh....

    I sent the second fax to the onc's office this afternoon...keep your fingers crossed.  If I don't hear anything, I'll call Friday night my time and try to get an answer.  Big, heavy sigh...

    Welcome, Helen!  Grab a seat...we have gluten-free stuff on our train, so come join us.  Wish we had a financial advisor or lawyer to take care of billing questions...can we add a car?

    Cynthia, good luck w/ the melatonin.  I've taken it before, but switched back to the Tylenol PM...tried and true.  Not sleeping is the pits.  Love your Seuss quote.

    Time for bed.  Take care, and wishing you all lots of flowers, candy, and love today!

    Lynn

  • Helenhsm
    Helenhsm Member Posts: 5
    edited February 2008

    Hi Cynthia and Lynn, thanks for welcoming me. Smile Ahh Cynthia you are in the bay area as well. Cool. I'll be looking for those gs cookies. About the Melatonin - I've tired it once before and it didn't work, but the brand I'm using and the way it's taken (dissolved under the tongue) seems to help me. I'm using LifeExtension brand. I take 3mg, but my Chronic Fatigue dr. says I can safely take up to 16mg. This brand is more expensive, unfortunately - but if it works, it's worth it.

    Lynn, where are you living in Japan? I have friends who live there she's American her dh is Japanese. It must be SUCH a pain to handle you health and insurance issues from overseas. I am totally hearing you about the insurance hassles. I've been on the phone so many times with my insurance co. - it takes loads of patience. Every once in awhile I'll talk to someone who "gets" what I am talking about! Whew!!  Sorry about your weight thing - I can see how that would be depressing. I don't ever weight myself though I go to enough dr. appts to know my weight. I was at my all time highest weight I think a couple years ago and have been slowly losing it, thankfully. 

    Happy Valentines Day and I hope each of you are feeling love from people around you, whether you have a sweetheart or not!! 

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