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Bottle o Tamoxifen

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Comments

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    MTG - I have noticed occassional increased night sweats as well - I think I mentioned it earlier. I am suspicious that for me it has to do with an increased consumption of phytoestrogens, although I have not kept a log (but think I will). I am thinking turmeric, high garlic, chick peas (hummus), revesterol (red wine/grapes...) ..... Maybe collectively we need to write that book Wink

    C

  • 131mom
    131mom Member Posts: 4
    edited February 2010

    hello

    i just finished radiation jan 15th, stage 1 (microinvasion).  did anyone question the need for tamoxifen? just concerned about the risks.

     thanks

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

    Hi Girls!  Yes, I think we all questioned what could we expect taking Tamoxifen, and I specifically asked about the danger of blood clots, but since I had been taking the PILL, starting in 1961, THEN Premarin, & finally quitting in about 2000, my Oncologist said.."If you were taking those hormones for THAT long, & didn't have any trouble, then you SURELY wouldn't have problems with Tamoxifen!"...Wink  I know it's a gamble, meaning we don't know if they actually will prevent cancer from coming back...but if we at least have this drug, to help "fight" those chances, I'm gonna do it.  

    I've been taking Tamoxifen for just one month, & gals, I have to ask you....Is this why my left hand hurts so much I can hardly type?   This is the only thing "different" other than dreaming so much...Ha!  It started 2 days ago...And it never hurt before, of course unless I smashed it with a mini-cooper!  Damn, it hurts!  I know I could take maybe Xstrength Tylenol.....Is that what you take?  And if this is the only thing I notice, I figure I'm lucky!   I'm assuming that this "side effect" will level off...right?    Jeannette

  • CatbirdC
    CatbirdC Member Posts: 235
    edited February 2010

    Hi Everyone,

     Never a dull moment with the Big T.   After I know at least a month if not more I had a big old super duper hot flash last night.

    Don't know if anyone else experiences this but would like to know ???

    All in all I no longer have steady SE's....started Big T on September 10th...so almost 7 months......but just when I think I won't have any.....Hello Bonnie.... I'm Baaaccckkkkkkk.

    Bonnie

  • echosalvaje
    echosalvaje Member Posts: 73
    edited February 2010

    I started Tamox in mid-November. Didn't think I was having any SE's. The hot flashes for me started with chemo that sent me straight to menopause after my second treatment. I think I'm having some joint pain because I had been gaining quite a bit of strength getting back to yoga consistently, but in the past few weeks I actually feel weaker in some positions and have a hard time holding myself up. Is that what the body pain some of you complain about feels like?

    The only other SE I'm noticing and I'm not totally sure it's from Tamox is random dizziness. I lasts for about 5 minutes and doesn't seem to be brought on by anything consistent. At first I disregarded it as a SE because chemo left me with a heart condition and I thought that was the problem....but they don't appear to match up.

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    Joint pain, Jeanette IS a SE. Hopefully, it will lessen. I know for several weeks my low back just killed me when I rolled over in bed. It has gone.

    Dizziness, echo, is also a SE - and interesting you should mention it, as I have also experienced a wee bit of it - forgetting it likely is T related.

    Vit D - YAHOO - my level is up. Make sure you are ALL taking lots of it - up to 3,000/day is no problem. There is a simple blood test where your level can be measured. The Canadian numbers are different from those in the US, but I had dropped below low, low normal. Now, I am up to low normal ;-)  and they say Vit D is VVVVVVVVVVery important for us BC types. (Likely not as great an issue in Australia, maybe not the same in the south US but certainly true for the north and Canada, and I would guess the UK - where we get very little natural Vit D).

     Cheers all

    C

  • Sparrow
    Sparrow Member Posts: 80
    edited February 2010

    OK, it's been 14 days...  still no SEs as far as I can tell.  I feel a little PMS-y but it's the right time in my cycle for that.

    I've been struggling with post-treatment depression and anxiety but that started about a week or so before I started Tamox.  I don't think I can blame it all on the big T.  

    Still hoping for NO SEs.  ;) 

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    well done, Sparrow! hope the SEs keep away!

    C

  • MTG
    MTG Member Posts: 337
    edited February 2010
    Caroline - You raise a really interesting point. At first I poo pooed it cause I eat blueberries, almonds, soy burgers (I know, I know),etc  but hummus/chickpeas/falafel and garlic are really high on the list of foods high in phyto estrogens (http://www.dietaryfiberfood.com/phytoestrogen.php ). It's definitely is worth researching further. I'll keep you posted.
  • MTG
    MTG Member Posts: 337
    edited February 2010

    Wait ! Everything I'm coming up with says phytoestrogens should help REDUCE hot flashes and nightsweats ! (Just looking at menopause sites not getting into any BC pro/con soy etc debate.) Here's a typical site:  http://www.power-surge.com/educate/whatsinahotflash.htm. So, once again, I'm left confused. For now, after a night of nightsweats,  I'll just keep charting what I ate the day before and see how strong the pattern becomes.

  • snowangel
    snowangel Member Posts: 5
    edited February 2010

    My First Post. :)

    I have been on Arimidex for 3 mo. I have moved recently to Canada from the US and my new Oncologist is switching me to Tamox. I will begin taking them in 1 mo. as I still have a 1 mo. supply of Arimidex. She said in my case it is just as good a treatment and that I can be put back on Arimidex when it goes generic (hopefully later this year), She said there will be little change in my side effects at this point, as I have hot flashes, night sweats, and terrible joint aches already, also lack of sleep.  Other than that I feel great. One facter is the cost will be about $350.00 a month Less than the Arimidex. I picked up the prescription as I didn't want to wait till the last minute. It cost 21.95 for a month for the tamox.. I was shocked.  Does anyone have any comments on this. I am 48 years of age so pre-menap.

  • Sparrow
    Sparrow Member Posts: 80
    edited February 2010

    Caroline, thanks for the encouragement!  :)

    Snowangel, I called my drug plan people to ask about the cost of Tamoxifen.  They have a RX by mail service (Medco) and my Tamoxifen costs $25.00 US for a 3 month supply.  I then called my local Wal-Mart pharmacy and found that even without any drug plan discount the cost was $24.00 US for a 3 month supply.  That's for generic Tamoxifen, the same stuff my drug plan would have supplied.  Impatient soul that I am, I took my script to Wal-Mart.  It takes up to 2 weeks to get Medco drugs by mail.

    Are there Wal-Marts in Canada?  Can you order from a US pharmacy somehow?  It seems like you will be paying almost triple the price that I am. 

    I don't know the details about Arimidex vs Tamoxifen in your case.  I'm 46 and pre-meno too, if that helps.

  • snowangel
    snowangel Member Posts: 5
    edited February 2010

    Thank you, I will most defin. check into it. Yes we have Wal Mart here. I didn't even think of that. I will check that as well.

    I really appreciate the help. I am so new at all of this. 

    Thank you :)

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    Hi SnowAngel,

    I live in Calgary and pay nothing for my T. I get it at the Tom Baker Cancer pharmacy. When you get to Canada, you should be able to get hooked up with an oncologist or someone connected with cancer. I know in Alberta, this drug is free. (and the big T is better for your bones as well!!)

    Good luck

    C

  • snowangel
    snowangel Member Posts: 5
    edited February 2010

    I will most def. check into this. I didn't think about Wal Mart. We have them here.

    I am really new at all this and with the language barrier here it is hard at times.

    Thank you.

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    MTG - who knows ;-)....

    That is a great site - I wonder if the key words are 'circulating' phytoestrogen  and then it talks about body temp being altered by 'declining' phytoestrogens. Who knows?????

    It will be our luck that 'they' find out after all of us are done with the big T that phytoestrogens were good for us, helpful and all that......

    Where are the researchers when we need them?? and with T now being a generic, there is no incentive for more research....

    C

  • mumito
    mumito Member Posts: 2,007
    edited February 2010

    I swear this drug is definetly screwing with my moods  or state of mind.I have depressed thoughts now that were never apart of my life before even through treatments.

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    Very possible - mumayan  ;-( 

    Make sure you talk to your doc about it - maybe there is something that'll counteract it. I think there are others here who have had mood swings and depression, so perhaps they can be more helpful than I can be.

    Good luck

     C

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

    THANK YOU bcamnb and you other gals!  I just about figured out, it HAD to be the Tamoxifen! And if that's the only side effect I get, I can handle that!  When I washed dishes this morning, the hot water really helped my hand!  And I'm not having any hot flashes....if anything, my hands along with everything else is usually cold!!!!  Maybe it's this weather here in Denver....man, it will never warm up!  I'm thinking a "hot flash" might feel good, Ha!  Wink

    And I get my Tamoxifen at Walmart also....We have Secure Horizons, (Pacificare) and Medicare.  The cost is just $6 a month!  But I am probably a lot older than you gals!  The Femara at Walmart would cost $400.00 a month...the same with Arimidex!!   I am sticking with the T pill as long as I can, or as long as they will let me....  I know the other drugs work a little differently, but I saw when you compare them together, the end result is expected to be about the same!   And you are RIGHT....it IS better for your bones!!!!!!

    So thanks again!  Jeannette

  • micheleboots
    micheleboots Member Posts: 885
    edited February 2010

    Snowangel, welcome to Canada.  I am in Ottawa, Ontario.  Are you in Quebec?  I think you will have a hard time getting drugs over the boarder. I lived once In Colorado and tried to have a prescription sent from Canada and it got stuck in some customer/drug/department...never did get it...check around at different pharmacies as some have different dispensing fees..Shoppers Drug mart is good.  I havn't started yet so can't help with price info..

  • MTG
    MTG Member Posts: 337
    edited February 2010

    Here's a non-sequitur : Does anyone have any recommendations re: companies that provide good (read: reasonably priced as well as good coverage) Supplemental Dental Insurance ?

    I've been thinking about asking my onc about starting Zometa but I'd like to get some dental insurance in place just in case I find myself going to the dentist with issues due to the Zometa. I recently found out that, because I moved out of their jurisdiction, I can't add dental insurance to my current health plan ...which I love and so do NOT want to give up.

    Suggestions ? (And yes, I have posted this under it's own topic but got no answers)

  • snowangel
    snowangel Member Posts: 5
    edited February 2010

    Thanks for the advice and the welcome to Canada, yes I am in Quebec City. I do love it here and my Dr. is wonderful. It is very different from Oregon, USA though :) but I wouldn't change it.

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

    Morning MTG!...We don't carry dental insurance regularly, but if I think we are going to need it, I call our Insurance, Secure Horizons/Medicare, & have it added on monthly!...But you know, I'll bet you gals are much younger than I am.....(never mind)...Good luck with that one, but hopefully these women can help you! 

    And my HAND!  All that pain just disappeared!  It was if it never happened....Well, I mean it still hurts to move it, but not like yesterday!   So tell me, I can fall asleep really well, but if I wake up in the middle of the night, for any reason, my brain just starts working, & I stay awake forEVER!  I hate to take Melatonin.....should I just wait it out awhile?  Maybe that will go away also!

    Okay girls....get ready for the SUPER BOWL!  Cool SurprisedJeannette

  • CatbirdC
    CatbirdC Member Posts: 235
    edited February 2010

    Any Other Tamoxitrainers SNOWED IN  ?????  Cool

    Hi All,

    I'm here in southeastern Ohio with 12 inches of snow and it's still coming down !!!!!  I know where I'll be for a while.  LOL

    There are 2,000 people in my county without electricity.  Ours went out briefly for seconds but Thank God came back on.

    Bonnie

  • Grakenmom
    Grakenmom Member Posts: 137
    edited February 2010

    MTG - so sorry, I have no info on dental plans. We don't even have dental ins, just pay as we go.

    CatbirdC - we're in central OH and are most definitely snowed in. Thankfully, we still have power too, but I did all the dishes and laundry yesterday just in case we lost it :)  A weather guru that my husband knows says that we should be getting another dump of snow in 5-7 days. Hope your county-mates have power restored soon.

    xo, E

  • Erika09
    Erika09 Member Posts: 87
    edited February 2010

    Hello ladies - Has anyone done any base line liver panel to monitor liver enzimes before starting on tamox?

    Is your onco monitoring your liver for Steotosis (fatty liver)? Apparently 43% of women on tamox will develop fatty liver within two years of taking it! Has anyone had such problem? The % seems so high to ignore it!

    I have decided to start taking tamox but I can't stop researching on its side effects, and this is the latest I have found.

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

    No, Erika...but I hadn't heard of this before!  I'll ask the Radiologist when I see her in March, about it!  Would it show up in a blood test they give you before you start the Tamoxifen?  I'll ask anyway....I just know the cyp2d2 test, (or whatever) it is, really doesn't prove anything one way or another! 

    And that's GOOD, that you research....we HAVE to, because we have to be in charge of our bodies ourselves!  I decided NOT to take Femara, after researching a lot about it, & reading the posts on this site!   I also google everything if I have questions...like Tamoxifen vs Femare....etc.

    I know it sometimes drives our medical teams nuts, but the more I can find out about something, the happier I am! 

    Geez, you guys!  You are really getting hammered!!!!!!!!!!  We are expecting a little something tomorrow into Monday, but NOTHING like you are getting!!!  Just stay in, stay warm, & be careful!  xoxoxoxoxo Jeannette

  • MTG
    MTG Member Posts: 337
    edited February 2010

    This is a wierd storm.

    NYC and north Jersey have NOTHING, not one flake but Staten Island and south Jersey have a blizzard.

    And because of the storms here, things are backed up internationally as well. My best friend was coming home from meeting in Algeria, due to return last night. Her flight got cancelled so she spent last night and tonight in Frankfurt. Still can't fly home to DC so she's coming into NY. Gee, we have to hang out all day tomorrow , with her kids and husband sitting home in a blizzard. Wanna bet we're getting the better end of the deal ?

  • MTG
    MTG Member Posts: 337
    edited February 2010

    Chevyboy - google Zometa. It's supposed to be excellent for keeping C from metastisizing into bone mets. (Important for me since I has some slight vascular invasion and no chemo.) The only down side I see is some dental issues. So, I'm hoping to line up insurance sooner rather than later... And glad your aches and pains are feeling better. If things gets bad again, you might make a list of things you ate and did the day before. If you do this whenever you have bad aches, maybe you'll find a pattern.

    As for deodorant, none of us should be using regular stuff. There's apparently aluminum in most brands which gets into the body through the lymph nodes under our arms and isn't healthy for anybody. (Of course, like soy and phytoestrogens, not everyone agrees.) Toms of Maine and Thai Cystal are two exceptions that I know of.

  • CatbirdC
    CatbirdC Member Posts: 235
    edited February 2010

    Hi Tamoxitrainers, Beauties, Etc.

     M....I never dreamed deodorant could be so dangerous and not only breast cancer but Alzheimers with that aluminum.

    If you search under deodorants without aluminum you'll get a lot of info.  Like plain old Arm and Hammer (of the baking soda variety) makes one without aluminum or paraben, as does Lady Speed stick.  And a cute named one...Kiss My Face, but that's not available any where near me.  Of course it can be ordered on line.

    SUSIE~~   You're probably getting all ready for the Super Bowl.  I was wondering if you got much snow.  I'm not much of a sports fan but in this area most root for Pittsburgh.  We're only 60 miles from there.

    We ended up with 20+ inches of snow here.  There is supposed to me more on the way Tuesday.  I hope we get spared. 

    Take Care,

    Bonnie

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