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Comments

  • Harley44
    Harley44 Member Posts: 2,126
    edited January 2010

    Hey Linda,

    Yes I'll still pop in occasionally.  I won't forget you.  You are a very special friend!


    Deb,

    Welcome to the Tamoxi-Train!  I hope you'll have a smooth ride!!  I was on board for 2 years, but my onc's plan was for me to switch to an AI after two years.  The jury is still out as to how long I'll be taking Femara...   but I'm just taking it one day at a time.

    Hannahbearsmom,

    Thanks!  Will do...  So far, except for a little bit of dizziness, I am doing ok.

    marlenet,

    I am also 46 years old, but I went into menopause very early, as I had a rare condition called premature ovarian failure...  so I could never have babies, but I was dx'd at age 35, so I've been postmenopausal for quite some time.

    If I feel too scared about these AIs, I may ask my onc if I can just take them for 1 year, or 6 months, and then switch back to Tamoxifen.  I don't know why I couldn't switch back and forth, so I won't have to endure too many se's for too long. 

    Kelly,

    So far, so good... but it's only been two days... today is day #3!  So far, the only se I have had is a bit of dizziness.

    CatbirdC

    Thanks!


    Hope everyone has a wonderful day!  It's very cold and windy here....   BRRRR....

    Hugs to all

    Harley

  • marie111
    marie111 Member Posts: 21
    edited January 2010

    Hello Ladies:

     Your post have been most informative. Thank you ! I started taking Tamoxifen about 6 weeks ago and have not had any major SE so far except that I am REALLY REALLY fatigued. I sleep 10 hours a night and still feel tired when I wake up. I felt better during chemo then I do know ! Could this be because of the Tamoxifen or maybe because of chemo induced menopause ?? Has anyone else had this SE and if so what did you do to deal with it better ?

    Thanks,

    Marie

  • bcamnb
    bcamnb Member Posts: 334
    edited January 2010

    Hello All Laughing

    Best of luck, Harley!

    Jeanette - I sent you a private message (sometimes they are hard to see you've got one). Yes, I take a low dose asprin most every day with my other vitamin pills et al (glucosamine, calcium, multi-vite, seal-oil, Vit D). Yes, I arranged the metabolizaion test myself. Very easy to do although it was about $330 out of my pocket (would be less for you in the US). Drop me a note if you want more info. I simply was not prepared to take a medicine that might not work at all for me (and it does not for 7 - 10% of women). Yes, I can understand your concern about strokes. Another question for your onc. Also, it is my understanding tamoxifen is made generically and depending on the manufacturer, the 'additives' differ. Sometime, apparently, these create sensitivities/SEs. I take a 10 mg one and a different manufacturer 20 mg one. (More than the usual 20 mg dose as I am an intermediate metabolizer. The jury is still out on whether the increased dose is a good idea but..... ) So far so good.

    Hope you are all having a great w/end I got in a 55 min walk, even though it is -10C here. The walks are not always that great so one has to be careful underfoot.

    Caroline

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited January 2010

    Hi Caroline!  Yes, I answered your message!  Thanks!...I will ask today about the test!  And how did you arrange the test yourself?  I will ask the Oncologist to see if he can help!   I hope our Insurance will cover it... I DID buy the vitamins...And a pack of 100 green tea bags, ha!  I bought ..... D3...CoQ-10...Calcium Citrate+D....Magnesium...Melatonin...and Natural Fish Oil, & I have Glucosamine.  I am not one to take many vitamins, but I'm really going to do it this time... Tell me, how & when do you take yours?  I guess I'll read the directions, that might help! Wink  I found out you take the Fish oil in the morning with a meal...man, that one reminds me of my Mom giving me Cod Liver Oil when I was a girl! 

    That is interesting about the "additives" in tamoxifen....All I can do is give it a try...Maybe I could start out with a lower miligram, then try more!  I'll add this to my list for the guy...he won't know what hit him, Ha! 

    So I'll find out today...My Daughters friend, a Doctor said this.. "I would definitely try to start it, at a lower dose if needed, you can always stop it if you need to,it has been shown to lessen the chance of any recurrence , and even if it does come back it puts it in slow motion and can delay it for years . As long as you were not on oral or skin-patch estrogens in the last few years you will not likely have many side effects. Your circulating estrogens right now should be very low, likely from your adrenal glands."

    So I thought that just nailed it!  I had been hanging on the fence for a couple weeks, and I'm almost one of you "Tamoxibuddies!"  Thanks always, for your help!  Jeannette

  • CatbirdC
    CatbirdC Member Posts: 235
    edited January 2010

    Jeanette9  ~~

    Just wanted to mention that you can get the Omega3 fish oil that is coated like some aspirin and that will keep you from getting that horrid after taste.

    I got mine at Walmart.  :o)  I take a lot of the vitamins you mention and I think lots of us on here do.  As long as they are safe, I feel it's worth a try.

    It's SO COLD !!!!!!!!!!!!!!

    Bonnie

  • Susie09
    Susie09 Member Posts: 225
    edited January 2010

    I am back and I am alive!!!!!!!!!!!!!!!!! Did you miss me?

    And Bonnie, it is cold here too! Can I say BRRRRRRRRRRRRRR??? I think the temps is in the single digits, but, -10 below with the wind chill.  I don't mind winter if it isn't this cold.  This is dangerous.  We did have a pretty white Christmas, which I did love.  I think the whole week is suppose to be like this.  So, BRRRRRRRRRRRRR again!  lol  I just hope and pray that everyone is safe and warm. 

    I know that I have missed so much since I haven't posted in a few days, so, I am sorry.  I doubt that I can catch up, so, I will just start from here.  I have had company and my hubby took some vacation time, so, I haven't had any free time.  But, my hubby went back to work today!  Laughing   And, my girlfriend is getting ready to go back out west.  Laughing  Notice the smiles???  lol

    So you tamoxibeauties, hang in there and I will post more later to all of you. 

    Need a laugh?  Read these! 

    Susie

    The last fight was my fault. My wife asked, "What's on the TV?" I said," Dust!"

    What is the difference between a dog and a fox? About 5 drinks.

    Do you know the punishment for bigamy? Two mothers-in-law.

    The most effective way to remember your wife's birthday is to forget it once.

    First guy (proudly): "My wife's an angel!" Second guy: "You're lucky, mine's still alive."

    How do most men define marriage? An expensive way to get laundry done for free.

    Just think, if it weren't for marriage, men would go through life thinking they had no faults at all.

    If you want your wife to listen and pay attention to every word you say, talk in your sleep.

  • Hannahbearsmom
    Hannahbearsmom Member Posts: 266
    edited January 2010

    Susie: You're so cute! Glad you're back!

    TCK

  • Alaina
    Alaina Member Posts: 153
    edited January 2010

    Boy have I been cranky and irritable lately!  I'm just over one month in on this train-ride!  Anybody else have mood swings and crankiness as a side-effect of Tamoxifen?

  • CatbirdC
    CatbirdC Member Posts: 235
    edited January 2010

    Hi,

    Alaina ~~   OMG  YES  !!!!!!    It does slowly get better.   LOL

    SUSIE  ~~  WELCOME BACK GIRL !!!!!!!!   MISSED YOU  .....  NEED SOME PICS.....

  • Susie09
    Susie09 Member Posts: 225
    edited January 2010

    Hey TCK!  Thanks for the welcome back!  I love your picture!  Very pretty!  It seems like I have been away from here for a week.  OMG, I have I think.  lol  Surprised

    Hi Alaina!  I am sorry that you are cranky.  I haven't had that YET on tamox, so, I am lucky so far.  I have read where several have gotten very moody on tamox.  I think I read where it can be a side effect.  Has it just started?  Anything else going on in your life?  Tired?  Love life trouble?  Anything?  I might get real moody if this cold snap doesn't break soon.  Hubby laughed when he came home from work tonight. ( YAHOO, he was at work all day Laughing )  I always have cold feet and I have 3 pairs of socks on.  lol 

    Bonnie!!!!!! Laughing  So you need pics huh?  Well, do you want a hunky fireman?  A male model?  A male body builder?  Or, do you want this???????????????

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited January 2010

    Jeanette - My naturopath put me on Omega 3 today, he recommended Nordic Naturals Ultimate Omega  the soft gel coating has a natural lemon oil taste - not fishy at all.   I am not a huge fan of fish so these are AWESOME!  I am taking all the supplements you listed PLUS B-6 for stress/nerves...all at the recommendation of my naturopath even down to the green tea :)

    Yea! Susie is back!!

  • js37
    js37 Member Posts: 47
    edited January 2010

    i take an omega 3 made by nature made and it has absolutely no taste at all.  i take them everyday and never notice any taste at the time or coming up later. 

  • bcamnb
    bcamnb Member Posts: 334
    edited January 2010

    Wow, you miss an hour and have pages to read - well, almost.

    Susie, your one liners are TOOOO good! Thanks. You always bring a smile. 

    Alaina, my onc was very clear to me (and my husband!) that mood swings were a real SE possibility. So, yes, you can blame the big T. I'd get some help with it, though, if I were you. I am sure there must be a safe med you can take until things even out....

    Jeanette, good comments.....

    Everybody else, a big hi from the Rocky Mountains. Remember the days are getting longer - spring IS coming.

    Caroline 

  • Alexis2u
    Alexis2u Member Posts: 20
    edited January 2010

    Welcome back Susie!  Love the one liners and the cute kitty pic!  I missed those! 

    I have been moodier since I have been on tamox too Alaina.  I thought it was just because I am not sleeping well, so, that makes me grumpy.  I haven't slept well since I started taking it.

    Spring, please come!  I need some sun!Cool

    On a personal note, has or is anyone experiencing vaginal dryness?  If so, what are you using to help with it?  Thanks and sorry if this is too personal.

    Lex

  • bcamnb
    bcamnb Member Posts: 334
    edited January 2010

    Hi Lex,

    Nothing can be too personal on this site - we are here for each other. I have been using Vit E vaginal suppositories (800IU) since I had to instantly quit the vagifem I was using. This is the best product I have ever used. It is used at bedtime (daily at first; I'm now down to a couple/week or when I guess I might really need it Wink). It is messy and I have resorted to panti liners on the days following - but it makes such a HUGE difference. I have a prescription but I understand one is not really necessary (but is partially covered by my provincial plan if it IS a prescription). You need to find/have a pharmacy that can compound a medication as it is specially formulated.

    Surprising how docs don't know about this. Saw my GP for the first time since last January! (she's not too interested in me, I'd say - even though I have gone to her for 18 years!) but she was interested in the suppositories - and obviously didn't know anything about them!!

    Hope this helps

    C

  • Liz000
    Liz000 Member Posts: 28
    edited January 2010

    Hi Ladies,

    This is my third day on the train, I already feel I'm very cracky! (Yes I heard you Alaina!) I was a bit cracky before but now I'm going to blame tamoxifen anyway! Smile I guess I'll need a little bit longer to feel other SE...

    Susie, love that kitty! Thanks.

    Caroline, you had the metabolization test done? Is it CYP2D6 only or all three CYPs? I asked my oncologist but she said it was not necessary. 

    It's bitterly cold here in NC too. Can't wait for some warmer weather...

    Liz

  • bcamnb
    bcamnb Member Posts: 334
    edited January 2010

    Hi Liz,

    Good question! I checked my results sheet. Quote (from Genelex): "Our tests spot individual genetic variants in the four most important drug-metabolizing enzymes: Cytochrome P-450s CYP2D6,CYP2C9,CYP2C19 AND CYP1A2" and later it goes on to say "Testing for CYP2D6,CYP2C9 and CYP2C19 places individuals in one of four categories:"

    So I guess from that, Genelex tested for those three. My onc was TOTALLY non supportive as well (until after I got the resuls back!) but I figured it was my body that was going to pop the pills for 5 years and I wanted to make doggone good and sure I was not one of the 7-10% of women for whom the drug did not work. As I have said many times on this site, I am one of the 35% of women who only partially metabolize the drug. That's why I am so paranoid about what I drink and eat - if it interferes with Tam. AT ALL. I am only going this way once and I really want this drug to work for me!

    Hope your crankiness goes away. Might be just part of the winter/post-Christmas blues...

    C 

  • Liz000
    Liz000 Member Posts: 28
    edited January 2010

    Caroline,

    Thanks so much for such quick reply!  You are a smart girl! As a medicinal chemist myself I know exactly a prodrug like tamoxifen won't do much if it is not metabolized to its active form. I don't know why the oncologists don't like the test. Maybe I should bug her again next time I see her. 

    take care,

    Liz

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited January 2010

    Okay, the FISH OIL I take is "Origin" Natural  FISH OIL 1000 mg, with OMEGA-3 FATTY ACIDS.

    It's actually alright, if I take a Ranitidine with it...for heart-burn!  Then I don't "taste" it!  Wink  And thanks o2bhealthy !!!  As soon as I take these, I'll try the ones you mentioned! 

    I answered your PM bcamnb !  But I'll ask the rest of you gals, what exactly does an Oncologist do that your Surgeon or Radiologist can't do?  I ....WE went to see him yesterday, & before even reading my "final pathological report" he said I should do chemo!!!!!!  I said No, I just want to try the Tamoxifen, or the Arimidex when it becomes generic! 

    Now BOTH my Surgeon & the Radiologist said I didn't need chemo....Now this "new" guy says I do!  To make matters worse, my DH thinks this cancer stuff is just a big money-making machine for the Doctors and Hospitals!    The Doc then said he is going to have the Hospital send a sample of my tumor to be tested for a "count"?  "THEN I would know for sure if I should do chemo" I never heard of this before!   So when my DH  left the room, I put on the gown, & when he came back he said  "Why do you have to be examined?"  And to tell you the truth, not even I knew why!  Then he slammed the door...Doctor came in....did his exam...& wrote me the prescrip for Tamoxifen.  I also had a blood test, to be sent out "to see if there are any cancer cells in it!"  I felt like I was starting over with all of this!!! 

    And to deal with this Husband of 52 years?  Do you gals want him?  Ha!  So last night was a little "quiet" around here...Oh well...But really, is it too much to ask for either my Surgeon or the Radiologist (which are both women, & my DH thinks they are fine) to prescribe me the Tamoxifen?

    So not only will I be in charge of my own body & decisions, I might now be in charge of smacking one DH along side the HEAD!   (or at least want to!)  I'm going to fill the d**n prescription today!

    Thanks girls....just needed to vent.......

  • Harley44
    Harley44 Member Posts: 2,126
    edited January 2010

    Jeannette,

    Sometimes, I think DH doesn't mean DEAR HUSBAND, but something else...  D  Head...

    Susie

    Good to see you again!!   Welcome back!!

    Harley

  • CatbirdC
    CatbirdC Member Posts: 235
    edited January 2010

    Hi All Tamoxibeauties !!!!!!

    Harley ~  you're too funny ~  !!!!  I'm sure Jeannette agrees with you.  Laughing

    With me, my oncologist is the sweetheart of all my doctors.  And he was the one that said no radiation or chemo for me and recommended the Tamoxifen....but made it my decision.

    Susie ~~  Hey some firemen might not be a bad idea.  Wonder how long the pics would stay on before being pulled.  LOL  How about a fireman with a kitty cat?  :o)

    Liz~~  I remember the "cranky"  when I was first on the Big T.  Mine was more like MEAN.  I actually had to start thinking first before opening the mouth, because I was actually shocking my own self with some of the things I said.  It would be funny but it's not funny.  I still land a good one now and then.  I think part of it is that the side effect got much milder.  Most all of my se's eventually let up or went away Thank God.

    My fish oil tabs are coated and I don't get that yuk yuk after taste.  Years ago I tried taking them and just could not stand that.  But these are great.

    It's Sooooooooooooo  Cold  here.  This is our warmest day in a while and it's 20 degrees.

    Brrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

    Bonnie

  • kcl65
    kcl65 Member Posts: 741
    edited January 2010

    Hello T-Ladies!!

    This board moves super fast if you don't keep checking on it!!  

    I hope all you mid-west and east coast gals are keeping warm and bundled up!!!  Yikes Bonnie, 20 degrees and I'm fussing over 49 here...what a baby I am!!

    Liz ~ I too had the CYP2D6 test done (per my onc) as there was no point in taking T if I couldn't matabolize it.  I also have my cranky moments but I think its because I'm tired due to the lack of sleep...my poor DH is so patient with me!

    Suzie~ Love the kitty on the pruter and the one liners!

    Harley ~ You are too funny! Good to see you and glad everything is going well for you!

    Jeanette ~ 52 years is a long time...Wow! My DH and I will celebrate 25 at the end of the month. Just one word - Men!!  

    Have a great rest of the day!!

    Kelly :)

  • Susie09
    Susie09 Member Posts: 225
    edited January 2010

    LoL @ Kelly saying one word  MEN!  Wink

    I can't stand my oncologist.  I think I will get rid of him.  Do we really need one?  My rads oncologist does a lot for me already and I did ask him if he could just take over and he didn't say no.  What do you all think?  He can watch me on tamox and order tests for me.  He already has ordered tests for me.  And, my oncologist seems afraid to even touch my breast.  Geesh  My rads oncologist said that is his job.  HMMMMMMMM  Is he just trying to feel me up????Surprised

    It is cold here too!  Are you keeping warm Bonnie?  I finally just turned the furnace up to 72 and now I am toasty warm!  The wind is coming from the West and thank goodness we have a windbreak on that side so the wind isn't getting thru. 

    I have started having leg and foot cramps.  I don't know if it is the tamox or if I am just low on potassium.  Someone told me that is a sign of it.  Should I start taking potassium pills or just eat more bananas?  I can put the soap back in the bed.  ( down there lol )

    See ya tamoxibeauties l8r!

    Susie

    p.s.  So you want a hunk fireman with a kitty Bonnie?  Not sure I can find that, but, I never say never.  lol

  • Susie09
    Susie09 Member Posts: 225
    edited January 2010

    Ok, this will have to do for now.  Sorry Bonnie, it isn't R rated or X rated!  lol  But, enjoy!

  • Harley44
    Harley44 Member Posts: 2,126
    edited January 2010

    Susie,

    LOVE the pic!!

  • CatbirdC
    CatbirdC Member Posts: 235
    edited January 2010

    OH SUSIE GIRL......YOU ARE TOO MUCH   !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    I LOVE THAT FIREMAN AND KITTY PIC.  YOU DID IT.  I HAD THIS FUNNY FEELING THAT YOU WERE GOING TO DO THAT ........AND YOU DID.

    I'd just eat bananas for now unless you get tired of them.  Bet it is from the T since so many others have had that very same thing.  Do the soap too.  Can't hurt.

    On the oncologist front I'd keep your rad onc you love and get rid of the nasty one.  We don't need any nasty doctors for sure !!!!!!     He's no doubt trying to feel you up.  LOL  NO....just kidding.  Foot in mouth 

    Hey Harley~~  WazzzUp ????  How's the Femara (spelling?) treating you ????

    Everybody Stay Warm.  Yeah Right.  :o)

    Bonnie

  • MTG
    MTG Member Posts: 337
    edited January 2010

    Hi Ladies !!!! Feels like ages since I've been here; "other stuff" is finally superceeding BC...both good and bad, I guess.

    Been on T since November 14 - nothing major yet (some aches and discharge but no biggie) Glad everyone else seems to be doing ok. As for Alaina and others feeling cranky - well, T has become my family's joke for whenever I'm in a bad mood; nice that it gets me some extra leeway.

    Jeannettes9565  - When your medonc said he's going to check your numbers, my guess is he's going to get you an OncoType DX test. Many of us here have had it. In short, it assumes that you will be taking Tamoxifen and then tells you have much benefit you get from chemo if added on top of the T (i.e. it actually quantifies the additional reduction in chance of reoccurence: under 18= low risk of reoccurence w/out chemo; over 30 = high risk of reoccurence without chemo, 19-30 =the middle ground, tougher decision making. Check out - http://www.oncotypedx.com/HealthcareProfessional/ClinicalSummary.aspx

    As for all who are taking supplements, D3, CoQ10 and Omeg 3/ fish oil are all fat soluble so best taken with some sort of fatty,  low carb food. Also, just be careful to read the small print so that you know exactly what you're taking. For example, I bought a D3 supplement that actually had more Vitamin A in it then D3, (not saying that Vitamin A is bad - kindof like soy, some sources say it's good, some bad) - just be aware.

  • Alexis2u
    Alexis2u Member Posts: 20
    edited January 2010

    Thanks Caroline for your reply on the dryness.  I just didn't know what to do and it is a problem.  I appreciate it.  I tried the Replens, but, it really didn't work.

    Love the fireman and the kitty Susie.  You are good at those pics! 

    I never thought MTG about reading the vitamin bottles.  I will from now on.

    Cold is the word here too, but, it is winter. 

    Lex

  • MTG
    MTG Member Posts: 337
    edited January 2010

    Susie - Re: ditching your med onc, my two cents (for what it's worth) - Get rid of the guy if you dont mesh (I'm actually on my 3rd medonc) but dont short change yourself by only using a radonc.

    Even if well meaning and well informed, a radonc (a) may not be up on the the more cutting edge stuff - things happen so fast in this field that even some medoncs can't keep up. Since a rad onc has to focus on radiation issues, he's unlikely to be as well versed in new onc issue as a med onc., (b) probably will not have the experience in detecting more subtle signs of problems - being able to distinguish beteween normal aches and pains and those that require additional tests is an art that often comes only with experience, why not give yourself the benefit of such experience and (c) a medonc, not a radonc, is the one who will participate in ongoing studies, being part of such studies can get you things like the test to see how you metabolize Tamox. thatmay not be generally available or, if otherwise available, would cost you significant $ out of pocket.

    I know from my own experience that it's hard finding a medonc that's a good mesh. Although I felt a bit foolish, I kept looking until I found one that I was completely comfortable with. Go check out another one...or two...or even three, if necessary. Aren't you worth it ?

  • Harley44
    Harley44 Member Posts: 2,126
    edited January 2010

    CatbirdC

    Hi there....   Today is day #5 on Femara... yep that is right...  :D    so far, it isn't too bad, but... only day 5...   I had some dizziness at first, but so far, so good...Thanks for asking...

    Harley

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