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Bottle o Tamoxifen

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  • livinginboji
    livinginboji Member Posts: 9
    edited February 2008

    oops, I meant to add that I am somehat concerned with the lack of tests my onc is requiring. I am having a chest xray before I see him on the 6th but thats it. No mention of MRI, CT or PET scan. Any thoughts? I don't have to have another mammo until July (the 1 yr. anniversary of dx).

  • JapanLynn
    JapanLynn Member Posts: 211
    edited February 2008

    Good morning, ladies, and may I just say thank heavens it's Friday?!  If it wasn't I'd have to seriously consider quitting my job (just kiddin').  Wow...lots of activity on the board while I slept.

    Virginia, my first thoughts go out to you...here's hoping your dad makes a smooth adjustment to assisted living.  I think that's just the ticket for so many seniors...they're not alone any more but still have the option of being by themselves with caring, watchful eyes nearby.  Snow and ice for you today?  Ack.  I was living in Westchester/Yorktown Heights during treatment...I loved driving to radiation through the gorgeous fall colors, but I can't imagine having to worry about the cold stuff and all the dr. appts.  Take it easy on the roads...stay home and play DS whenever possible. :-)

    Re: follow-up bloodwork, etc....my onc wants a complete blood count and tumor marker test every three months until I get back to the states and see him next summer.  From what I've read, most oncs don't schedule MRIs or other scans regularly unless there are some symptoms to warrant it.  I'm guessing that my gyn will want a trans-vaginal ultrasound this summer because of the tamox.  We'll see...I saw him about two weeks before I was diagnosed, and I had some of the millions of scan results sent to him last year.  I had only seen him once...he just came into the practice.

    Every time I've seen my onc he's done a breast exam, and felt around my collarbone and armpits.  Then it's just talk.  Wish I could wrap him up and send him to you, Harley...he's the most caring man ever, and he likes it when I do research and question him about what he's asking me to do/take/whatever.  At least he seems to like it. :-)  Please pray that my Effexor comes in today or tomorrow...I need to get started on it, and I leave for five days on Sunday.  If you aren't sure I need it, just ask my kids at school. :-(

    I had a wonderful experience last night...went to a place called the Stone Spa with three other teachers.  It's a tiny little place where you put on a two-piece wrap thing and lay on hot stones for 3 15-min. shifts.  I just gushed sweat...lost a lot of toxins, I hope.  It's within walking distance of my apt., too...I think I may become a regular.  Can we add a sauna car to our train?  Of course, there would be a guarantee attached--no risk of lymphedema for anyone.  What do you say??

    Eek...it's getting late.  Gotta make my breakfast and lunch, and get ready to face the day.  Take care, friends...enjoy your evening!

    Lynn

  • Harley44
    Harley44 Member Posts: 2,126
    edited February 2008

    Lynne,


    I would LOVE to have a sauna car on this train!!  YES!

    Oh, I wish I had your onc!  My onc has gotten better, though.  But, I still didn't get a call back today explaining WHY he wants me to stop taking the Effexor.  I really think it is helping me, and I don't want to stop taking it or switch to something else.

    Hugs

    Harley

  • dcbkc
    dcbkc Member Posts: 137
    edited February 2008

    Virginia,

    Didn't mean to send this @#$%$#@# weather your way.  Actually, my husband was in your neck of the woods this week. He's coming back to it as I type. And, yes, I'm in Kansas City area.

    Cheryll,

    Lack of MRI's, PET's, CT's might not be anything.  They all have a radiation component so the doctors don't want to do too many if they don't have to. It's like mammos -- every six months but every other only on surgical side.  Otherwise, might be too much rad.

    Lynn,

    I too envy you your onc.  I've only seen the med onc once -- right after surgery, see him in a month. My b/s can be impatient. I take my husband and a list of questions and sit there until we've gone through the list.  Sometimes it feels like he thinks it's time to move on when I'm not done yet.  My rad onc couldn't think outside of the box. Also very hurtful for my psyche.  Glad I don't have to go back to him -- ever!

    Your spa sounds wonderful -- can you send it my way!

    I did get back and forth across the street without slipping, but it was close!!!! Can't wait for Palm Springs!!

    You guys are great

    D

  • JapanLynn
    JapanLynn Member Posts: 211
    edited February 2008

    It's Friday night, ladies, and my Effexor didn't come today.  Ack!  The mail room is open on Saturday morning until 12...that's my last chance before I leave for Tokyo on Sunday.  Please cross fingers, toes, whatever that there's a beautiful yellow package slip in my box tomorrow morning.

    In the meantime, I'm self-medicating with chocolate.  Love those malted milk robin's eggs that come out before Easter...a bag of them leaped into my arms as I walked through the navy exchange this afternoon; what could I do?? 

    Monday is my 6-month mammo/ultrasound at Yokosuka Navy Hospital.  I'm not looking forward to sticking my bad boob on that plate...ouch.  Please send good karma my way...I'm certainly expecting an "all clear".

    Hope everyone had a good night's rest.  My bed is calling my name...lots to do tomorrow to get ready for my trip.  Love this thread...I always look forward to hearing everyone's news.  Take care, friends--

    Lynn

  • whoablaze
    whoablaze Member Posts: 3
    edited February 2008

    Lynn-

    I was just checking out your threads...how exciting to see someone else on a base!  I'm in Germany on an Army base...but work as a civilian.  I was only here a few months when I was diagnosed.  Now on Tamoxifen and back into the swing of things.  

    Tell me more about what you're doing over there, pretty please!  I work for Stars and Stripes, so you might know some of my Pacific counterparts.

    Best wishes-
    Tracie

  • ashaby
    ashaby Member Posts: 200
    edited February 2008

    Lynn,

    Good luck with your mammo and expect long scrutinizing looks at your films. Seems par for the course. The tech let me control the pressure of the mammo and that helped alot. And of course, there are little malted eggs waiting for you at home!!

    xxx Basha

  • my3girls
    my3girls Member Posts: 1,291
    edited February 2008
     

    Welcome to Cheryll and Tracie!  Pick a car, have a seat...I think you will enjoy "our" ride!

    Cheryll, I am on the 3 month plan with my onc.  I finished chemo at the end of Aug. and mast in Oct.  I have not been sent off for any further testing.  No PET, MRI...just blood work when I go in and exam.  I had a mammo...since it had been a year on my good boob.

    I do need to make an appt with my gyno, for my yearly check up.

    I would love to join you Lynn and anyone else on the spa car!  That sounds so wonderful!  I am still having discomfort and pain since my surgery 2 1/2 weeks ago.  Getting better though.

    D...I hear you about the snow, slush, and cold.  I am in OHIO..and very ready for Spring!!!!!!!!!!!!!

    Lynn...sending good karma your way for your Monday mammo!!

    Heading off to take the car in for some maintenance work (hopefully nothing more than that!)

    xoxo

    Lisa

     
  • whoablaze
    whoablaze Member Posts: 3
    edited February 2008

    Ah yes...the first mammogram since treatment!  Half an hour sitting in a room topless to have them crush those babies for two minutes.  Good times.  And what's with the radiation effect?  My radiated boob is HUGE.  My poor husband...I whip it out daily and make him look at the firmness and size!  Now, if I could get them even, it would be great.


    I'm all for the spa car...but keep me away from the chocolate.  Time to fight back and get skinny here
    Take care, all!  Have a wonderful, sunny day.

    Tracie 

  • lilith
    lilith Member Posts: 19
    edited February 2008

    *waving at Tracy*

    where in Germany? :)) I used to live in Heidelberg, went to PHV weekly... for laundry and newspapers, at the time there wasn't any other way to get brain fodder in other language than German around!!! irk. I am now in Switzerland, but will visit up next month...

    Lynn... oh what I would give to be able to get to that spa... I remember like bliss a stop in an onsen outside of Tokyo... :)) that water has a way to drive out any sign of stress, fatigue or worries! magic. I am not sure I could stand a sauna or the hot stones right now... I feel in a sauna quite a few times a day - my boyfriend look at me, and winks "having a hot moment hey?" - I flush red from the tip of my head (visible under the growing hair) to the fingertips.

    Hugs...

  • whoablaze
    whoablaze Member Posts: 3
    edited February 2008

    Good afternoon, Lilith! 

    I'm in the Frankfurt area.  I go to Heidelberg often.  Haven't made my way to Switzerland, yet, but hope to soon.

    I hope you're doing well! I am right there with you in the sauna!  My husband says he can feel the heat coming off me when a hot flash hits.  Well, I was hoping to be hot in my 30's, but this wasn't exactly what I had in mind!

    Enjoy your afternoon!

  • violet
    violet Member Posts: 1
    edited February 2008

    I've been on Tamoxifen since 2004 -- I can't wait to get off this train next year! Still on for now though. Nice to see you all.

    :)

  • agordon5
    agordon5 Member Posts: 1
    edited February 2008

    Hey all,

    I am a 4 year DCIS survivor.  Took Tamox for a year until having ovarian cyst probs and possible uterine lining problems, which has resolved.  I have started taking it again this year, along with Xanax.  The mood swings and foggy thinking is what bothers me.  I exercise and pray hard. I wish I didn't have to take it, but I want to live.  So far so good. 

  • Miss_Lolli
    Miss_Lolli Member Posts: 72
    edited February 2008

    Okay...the pest is back! lol I have another question for you helpful ladies. If you start on tamoxifen because you are pre-menopausal do you automatically stay on that for the standard time, or do they test you periodically to see if you've gone into menopause during that time so they can switch you to an AI?

    I don't want to even ask my onc....he's hinted that I should force my body into menopause so I can take Arimidex. I have to say that I'm not on board with that program, so I'm kind of hoping if I start on tamox I'll get to stay on that for the five years.

    Of course after that time period, if more long-term studies show that it would be beneficial for me to continue on some AI's I'd be willing to see how my body handles them. I just don't want to be coralled into it so that I can be a guinea pig, or because the tamoxifen is now available in generic (i.e. the pharmaceuticals are lobbying the docs to push the more expensive AI).

    I guess I'm just saying I'd like to stick with the tried and true.....

    Just my own personal gut feeling.

  • JapanLynn
    JapanLynn Member Posts: 211
    edited February 2008

    Good morning, ladies--

    Lori, my onc will be testing me to see when I'm menopausal so I can switch over to an AI; however, the more I read the more I'm not sure whether that's a good thing.  I had read somewhere (probably something put out by the drug co.) that women who took tamox. and then switched to an AI had better outcomes overall.  Sigh...I haven't even gotten a handle on this drug yet; not sure I want to mess w/ another one.  For me, no period since Sept.

    Well, the USPS let me down...no Effexor in the mail on Sat.  So I'm off to my mammo/ultrasound appt. on Monday and conference Tues.-Fri. w/out starting an anti-depressant.  Wahhhhhhhhhhh-okay, I'm better now.  I was just so hoping to get started RIGHT NOW on losing this stuck-in-quicksand feeling.  Oh, well...soon.  I'll just keep my xanax at the ready and that will have to do for now. 

    I'm a little nervous about my trip today...I have to take the bus/train to Yokosuka from the airport.  No big deal for most people, but I tend to get overwhelmed in train stations...so bustling and crazy; even though signs are in English as well as Hirigana (or whatever...they have 3 different written languages here), they're hard to find.  I have directions, though, and if I stand there looking pitiful enough (not difficult), someone will help me.  Wish me luck on getting there, and on test results tomorrow.

    Welcome to the new folks...Tracie, I'll PM you when I get a chance and we can tell Germany stories.  I'm a DoDDS teacher...was in Stuttgart at Patch Barracks from '86-'98.  There's a lot I miss about Europe, but the Pacific is pretty good, too.

    Hi to everyone else...hope the train ride is smooth for everyone.  Yesterday I sat in the Easter candy car with a bag of Rollos, stress eating.  No more of that, though...I hope.  Take care...

    Lynn

  • ashaby
    ashaby Member Posts: 200
    edited February 2008

    Huge good luck, Lynn, on your tests. We're all on the train waving flags and throwing chocolates.(I love Rollo) Maybe if you look carefully you'll see the Tamoxitrain at the station.



    xxxx Basha

  • catbert4209
    catbert4209 Member Posts: 122
    edited February 2008

    Cynthia!  So glad to see your posts!  How are you feeling?

    I am back on tamox after my bilat mastec and reconstruction surgery of 1/30. Actually feeling pretty good, but still getting the hot flashes, which is really wierd because the expansion is making me feel like I'm going through puberty again!  "Look, Ma, I've got cleavage!"

    I've added broccoli and brussel sprouts to my list of veggies after reading these posts.  Sure can't hurt!

    Have a great day!

    Cat 

  • albertha
    albertha Member Posts: 2
    edited February 2008
    I am on tamoxifen after chemotherapy and I am also concerned about the hair thinning side effect. My hair has just begun to grow again and I have put away the wigs as I am looking forward to getting back my hair as it was
  • yellowrose
    yellowrose Member Posts: 181
    edited March 2008

    Tracie and Lynn,

    Retired military here.  Also lived in Germany, in Schweinfurt during the whole Chernobyl mess. 

    I have seen other threads posted by ladies with military ties.  It might be interesting to have a military thread.  The insurance issues are different and there are other issues that seem to be more unique to military care.  What do y'all think of a thread for ladies whose second language is military jargon???     ~S

  • Miss_Lolli
    Miss_Lolli Member Posts: 72
    edited February 2008

    Lynn, thank you so much for answering my question. Good luck on Monday. I'm praying and crossing my fingers and toes, just to cover all bases.

  • Harley44
    Harley44 Member Posts: 2,126
    edited February 2008

    txgrl01,

    My dh is retired Navy, and I have had to deal with TriCare... what a mess!  I now have a case manager who is helping to get the necessary approvals, but it is still a real pain!

    I think it would be a great idea to have a thread for military issues, but I think it is up to the Moderators...  Maybe we should contact them and see what they say? 

    How do we do that?

    Harley

  • yellowrose
    yellowrose Member Posts: 181
    edited September 2010

     -

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited February 2008

    Hi Ladies!

    it's so funny how all oncs are different...  I didn't even see my onc nurse this past week.  Switched my Herceptin treatment from Friday to Thursday b/c of the snow, and I got a "bye" seeing the nurse!  Anyhow, she did stop by the infusion room and I asked her about the CYP test (or whatever that blood test is).  She said that they don't rountinely do it (sound like they NEVER do it) and that it's a relatively new test that checks to see if you are motabolizing a bunch of meds...  Anyhow, I gave her the name of the test and I am going to ask my onc about it on 3/11.

    As for follow up tests...my onc told me to see my gyn around 1 year of diagnosis.  Did that and had the f/u mammo back in Oct.  Then the breast center advised me to have an MRI in Dec ('07) with a f/u mammo on the right (affected) breast.  Gyn also started freaking out about the b/c and sent my for the pelvic US (back in Oct) which showed lots of cysts --- so she made me go for a pelvic MRI, then I had to follow it up with yet another pelvic US.  I think that they realize I'm just a very cystic gal and they haven't said I have to go back for more ovary testing...

    My onc totally ISN'T pushing me to go into menopause.  I wonder about that all the time.  But she is against it for bone and heart health reasons...  So, I think you can get good arguments for both sides of the coin.  It sucks b/c you could aways say "what if."

    Ok, me rambling again.  Dad was awesome yesterday...almost as good as before I went on my cruise.  I got into a wicked fight with my brother...a shouting match in front of my Dad.  It was horrible and he's a toad (my brother...not my Dad).  The Tamoxi-rage was FLYING yesterday...  Deep breaths.....deep breaths....

    Lynn- big hugs and warm wishes for your mammo.

    Hi to all!!!  (Sorry I didn't mention/comment to all individually, but think of you cyber gals all the time)

    V 

  • honeygirl
    honeygirl Member Posts: 136
    edited February 2008

    Hi ladies. My onc only does blood work. If I have no symtoms , they only do the blood work. My palps , once again have stopped. But I am having some hotflashes again. I was good for about a month on the effexor , now , I have had the sweaty flashes a few times. Yuck. And just before the sweating starts , I get prickly feelings on my skin and when I start sweating , I start itching! Its never ending...

    Welcome to all the new tamoxi train riders! Hope everyone is having a good weekend. Lynn , good luck tomorrow! Praying for you.xxxx Melody

  • Miss_Lolli
    Miss_Lolli Member Posts: 72
    edited February 2008

    Virginia, maybe it's just the "conspiracy theorist" in me, but I get very suspicious when my onc tries to push me towards artificial menopause.  Mostly because he seems to have vague reasons for this (in my opinion) and does not seem at all well-versed on the subject. He seemed totally shocked when I told him that, in general, the AI se's seem harsher than the ones from tamox. I don't know....it just makes me feel like he's "buying into the hype" a bit, rather than doing what's best for ME. You know what I mean? Why push my body into something it's not ready to do, only to take something that may be harsher on it? Yes, I want to live, but I want my life to have quality as well.

    Ok...me rambling again. I can put the best to shame in that area. lol

    I'm so glad your dad is making a come-back. WOOHOO GO DAD!

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited February 2008

    I forgot to mention I get my finger pricked every 3 weeks b/c of the herceptin, then the blood work every 3-4 months.  Oh, and MUGA scans every 4 months b/c of the herceptin.  OYE.  So much to remember.

    Miss Lolli (LOL, I don't know your real name, sorry!)...I think my onc kind of feels the way you do.  I have a good friend who is being treated in NYC and she gets injections in her belly every 3 months to put her into menopause...when I mentioned it to my onc, she went crazy and said why would you want to do that at 40 years old.

    So, again, I think you could argue both sides of the coin.  I am the type of person that someone needs to say "You should do this...."  I am such a baby about that...and I also put ALL of my faith in my doctors.  BTW, I LOVE my oncologist...  She is a sweet little petite thing...younger than me!!  She spends all the time in the world with me and never every makes me feel rushed...

    Lordy me, hopefully we are ALL doing the right things....

    Dad wasn't so great today...  My nasty brother got into ANOTHER shouting match...this time with my brother...  Boy, does that man need an attitude adjustment or what??  UGH.  I keep telling myself that maybe his grief over my Dad's illness is manifesting itself in this way...still makes me seethe....

    Back to work tomorrow....MRI for me.  Boo hoo.  I don't want to get stuck with a needle for the contrast.  :(

    Lynn- can't wait to hear your outcome....good karma to you lady!!  :)

  • JapanLynn
    JapanLynn Member Posts: 211
    edited February 2008

    Greetings from Yokosuka Naval Base--

    Good news...had my mammo this morning and all is well.  They don't have a digital machine here; the tech said they're getting it next month (just my luck, huh?).  Anyway, she seemed competent, took extra films of each breast, and said two radiologists had read films old and new...said there was no reason for an ultrasound since the films looked fine.  I didn't argue...I'll be home in four months and will see all the docs.  Thanks for all the thoughts and prayers...they worked!

    Got here yesterday with no problems...guess all my riding on the tamox. train made navigating the Japanese trains easier. :-)

    I like the idea of a military thread; I speak most of the lingo even if I'm a civilian.  Haven't had the fun of dealing w/ Tricare.  When I was diagnosed last summer I called BCBS to see about getting a case manager...was told they don't do that.  Why do something that makes sense and is easier for the hard-paying, long-suffering client?  They probably think they can keep me good and confused by having me talk to a different person every time; maybe they figure I'll pay whatever they send my way.  I thank God every day that I have insurance, but it's such a huge hassle to get what you're entitled to.

    Virginia, sorry about the brother problem...may his attitude be adjusted swiftly and well.  Glad your dad seems to be a little better.  May it continue!  Looks like the weather was really nasty your way...hope it's calmed down.

    Re: induced menopause...I figure it'll come soon enough on its own.  There would have to be a really compelling reason for me to go the medically-induced route.  Each to her own, I guess.

    It's 1:30 p.m. on Monday here...I've done my shopping and I think I'm ready for pj's and my book.  I leave for Tokyo tomorrow morning at 8:15, so no sleeping in.  Take care...good luck w/ your MRI, V.!

    Lynn

  • ashaby
    ashaby Member Posts: 200
    edited February 2008

    Hooray Lynn for a good mammo! What a relief. You must be walking on Japanese air.



    Virginia, Sometimes people get mad rather than sad. Your brother?



    Tomorrow I go to get my breast inspected for lymphedema. I'll keep y'all abreast.

    (I'm sorry gals I am so silly. Ever since my neg biopsy I've been walking on air.)



    xxxx Basha

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited February 2008

    Yay Lynn!!  Whoo hoo!!

    Yes, I think my bro is manifesting his grief with anger...or should I say it's just been exaserbated...  He's always been kinda mean and kinda crabby. 

    Basha- you are funny.  My boob is still swollen from rads...almost a year now!  And tan...  Still have swelling in both hands (tight rings) so I'm not sure if it's lymphodema or SE's from Tamox or Herceptin.

    Happy Monday all!!

    V 

  • Blinx
    Blinx Member Posts: 82
    edited February 2008

    Was talking with my Dad yesterday... he was recently diagnosed with prostate cancer. As part of his treatment, he gets something like an anti-testosterone shot, which might cause hot flashes! The poor guy, it's bad enough that women have to go through this!

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