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Bottle o Tamoxifen

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Comments

  • Jisman
    Jisman Member Posts: 96
    edited December 2008

    Hi all - Been awhile since I last stopped by and posted.  Had my one year mammos and a follow-up chest x=ray last week.  All clear - Yeah!

    OK.  I'm the next one that has been sucked in by the Wii.  Tried boxing for the first time today.  Lots of fun.  Currently undefeated after 5 bouts.  Just got the Wii Fit today so haven't yet given that a try.

    Hope all are having a good weekend.

    Joan

  • ashaby
    ashaby Member Posts: 200
    edited December 2008

    Yay Joan for your good results!!!!

    We had our first snow dusting last night. Kinda pretty, kinda cold!!!!

    Love to all, Basha 

  • awb
    awb Member Posts: 213
    edited December 2008

    beth----the risks are very low for blood clots and endometrial cancer, reportedly less than 1%. I just finished my 5 years of tamoxifen about 7 weeks ago and fortunately had very mild SEs.  I would just recomend a yearly transvaginal ultrasound to monitor both the uterine lining and the ovaries.

    Anne

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited December 2008

    Joan!  LOL!  Welcome to the land of Wii-dom!!  :D  I have been obsessed with my little handheld Nintendo DS.  Very amusing.  Need to get into some kind of exercising...have the Wii Fit, but it's got an inch of dust on it.  I haven't used it in months...  My new obsession has now become Guitar Hero World Tour (the whole band...)  Anyhow, most importantly...BEST news RE the clear results!  Isn't that a great feeling??

    Beth- I totally agree with Anne...  My oncologists have assured me that the benefits FAR outweigh the risks when it comes to Tamox...

    Got an invite from the Ice Cream group yesterday for an ICE CREAM SOCIAL on Friday afternoon...  I almost fell off my chair in excitement yesterday when I read that.  They are going to have ice cream stations and make your own sundae's.  Sometimes, my job just really sucks...  Yesterday I was eating dip...  LOL  And I wonder why I have weight issues...

    Hugs girlies....  Guess you are all busy with the holidays!  Hope everyone is doing well!!

    Virginia 

  • bethu77
    bethu77 Member Posts: 263
    edited December 2008

    I finished radiation on Monday and asked about ER & PR. I had it all wrong. Sorry! I asked about Tamoxifen and was told again it was the best preventative treatment. I am concerned because I had biopsies for heavy bleeding last year. I didn't mention this to my oncologist because I had forgotten about it. Since being diagnosed, testing, surgery and radiation, I have been in a whirlwind. My radiation oncologist told me there was no big hurry to start Tamoxifen yet. I need to see my gynecologist and talk with the oncologist again. Thanks so much for encouragement. So many people tell me how strong I am. I put on my "strong" face to those who need to see it and my "regular" face to those who don't need me to be the strong one. I will be visiting here regularly to see how everyone is doing. I also have a Wii fit. I hate when it groans to get my weight!

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

    Beth,

    Welcome to the Tamoxi train!!   Good Luck with your dr. appts., and hope they can be sure that taking Tamoxifen won't increase your chances of bleeding, because you are right.  Tamoxifen really is a good preventative for future bc risk.

    HUGS
    Harley

  • dmh2418
    dmh2418 Member Posts: 5
    edited December 2008

    I started on Tamoxi in July and had joint pain and fatigue.  My oncologist said Tamo doesn't cause this and it had to be my lupus flaring up again (I've had lupus for 9 years and know a flare up when I get one).  I told her I really felt it was the tamo but she told me to do some steroids and see if it helps with the joint pain and fatigue so we would know it was the lupus and not tamo.  Anyone else with lupus on tamo and have the same problems?  I know that I am very sensitive to all drugs and told my oncologist this but I dont think she believed me.  Any advice?

  • ashaby
    ashaby Member Posts: 200
    edited December 2008

    All I can say, dmh, is that many many of us have joint pain on Tamox and almost all our onco's say it's not a side effect. Guess what? I don't believe em.

    xxBasha

    ps I'm still posting Virginia. Write me, write ME!!  B 

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited December 2008

    LOL Basha...yep, I compuslively check the boards (like every day), so I'll always be here to pop in and say hello!!  :)  Glad to know that you will always be here too!!!

    Tonight we have our R&D Holiday party.  I ALREADY feel like I've been stuck in the "Help me I'm eating and I can't STOP car" for-like-ever...

    AND, I have satisfied my Guitar Hero World Tour OBSESSION by buying the whole danged band this AM!

    You know, after the BIG C, I have a whole new motto:  "Who better to spend my money on than me???????????"  And, by golly, I am TOTALLY living up to it...  Spend spend spend.

    Hugs!

    Virginia 

  • prayrv
    prayrv Member Posts: 362
    edited December 2008

    O M G !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    Virginia,

    ROTFLMAO!!!!!!!!!!!!!  I love your motto.  You have made my day!!!!!!!

    I get the e-mail alerts since I'm not suppose to browse at work - so I really had to struggle to keep the giggles to myself.

    Have a wonderful day!

    Hugs,

    Trish

  • JapanLynn
    JapanLynn Member Posts: 211
    edited December 2008

    Mornin', ladies--

    I'm not ignoring everyone...I've lost two posts in the past week.  GRRRRRRR...maybe the Atomic Element is eating them.  This will be quick so I can at least say hello before the sky falls. :-)

    Welcome to the new folks and howdy to the old folks.  VA, I'm going to adopt your motto, too!  Basha, I agree with you re: joint pain--we know better than the docs.  My hips have been killing me at night...I've started using Traumeel cream again...hope it helps.

    I'm on the Bataan Death March to winter break over here.  The kids are squirrely, the teachers have short fuses--not a good mix.  Wish me luck that I make it through the 19th without strangling some kid (or adult, for that matter).

    Hope everyone is enjoying the holiday season!  Take care, all...crossing my fingers and clicking on "submit"...

    Lynn

  • murphmort
    murphmort Member Posts: 76
    edited December 2008

    Morning ladies!   I am in complete agreement about shopping for myself.  I went shopping the other night and found myself purchasing items for ME!   Just couldn't resist! 

    I am disappointed that I'm not suppose to eat the fudge that I make every year as the chocolate chips have soybean oil ... so that's a bummer, but then I figure all those fewer calories that I'll have to work off!!!    It's a Rachel Ray receipe, takes less than 30 minutes. 

    My daughter comes home tomorrow from college, very excited about that! 

    I'll be on vacation for the last two weeks of December, so the holidays will be very relaxing.

    Have a great day, everyone!!! 

  • Barbie7
    Barbie7 Member Posts: 126
    edited December 2008

    Rats.  I just wrote a witty post and I lost it because I needed to re-log in. 

    Barbie

  • ashaby
    ashaby Member Posts: 200
    edited December 2008

    Cough it up Barbie. See how well our Tamoxi brains can remember...

    Basha 

  • Joyce-PA
    Joyce-PA Member Posts: 53
    edited December 2008

    I have been on tamoxifen for 11 months.  Just had my blood work done and it seems that my Glom Filt Rate (kidney function) is a little low.  Does anyone know if you kidneys could be affected by tamoxifen?  Also, just went for breast MRI Tuesday.....waiting for results...hopefully everything is okay.

  • Barbie7
    Barbie7 Member Posts: 126
    edited December 2008

    Ok, here we go again (although not nearly as witty).

    Virginia - Did you RSVP a +1 to the ice cream social?  I'd like to be your guest.  It is about 2 degrees here in Wisconsin and ice cream just sounds good...

    Lynn-now your week with the squirrely kids and colleagues is over.  I hope you made it through!  I work at a Big 10 University and it is that time of the semester when all the students are walking around like zombies...  And they all seem to wear their pajamas to class.  I don't get that.

    Basha - cough, cough... my tamoxi brain has been in rare form this week.  I've been forgetting some major things at work!!  Thank goodness I don't save lives for a living.

    Murph - remember that one side effect of Tamox is extra purchasing.  For me it is shoes, for Virginia it is Wii games, especially Guitar Hero.  So it sounds like you've joined those of us who have this SE.

    Joyce - I hope your MRI results come back soon and that you get the all-clear.  I'm sorry I cannot help you with the kidney question.  You could google it, or maybe someone else on the train has some answers.

    Ok ladies, I think I figured out why I was in such a funk last week.  I think it was partially due to the weather, the holidays etc. but also related to hormones.  My theory and I have no data, no studies, no evidence to support my theory other than my gut feeling (literally and figurtively).  I think my ovaries are pumping out EXTRA estrogen.  I think that the cells in my body are unable to use the estrogen (thank you Tamoxi), so they are signaling my ovaries to produce more estrogen!  So, my ovaries are working overtime, my moods are going all over the place, I'm having severe ovarian pains (hemmorhaging cysts).  I think my girly parts are rebelling.

    That is my theory and I'm sticking to it!

    Hope you all have a great day.  Barbie

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

    Sorry I have been too busy to keep up with all the posts here, but please know that you are ALL in my thoughts and prayers daily.

    I just got back from my 6 month onc appt.  I guess it went well.  My onc told me that I could take Raloxifene.  He went out of the room to write the Rx, and when he came back in he apologized and told me that it HASN'T been approved for use to prevent recurrence yet.  DARN!  I had so hoped I could hop off the train and try something else.  My onc said that he'd like to see me on Tamoxifen for TWO years, and then switch to an AI.  I told him that I would try, but I can't make any guarantees.  I also implored him, that if I have any more bleeding &/or uterine polyps, I begged him to call the gyn onc and tell him I need a hysterectomy, because I won't go through the d & c agony again.

    Hope you are all doing well.

    Hugs

    Harley

  • Kashcraft
    Kashcraft Member Posts: 4
    edited December 2008

    Mayo study further confirms the importance of CYP2D6 for tamoxifen effectiveness building the case for genotyping and medication management

    Mayo gave a presentation yesterday at the 31st annual San Antonio Breast Cancer Symposium that further confirms the importance of the liver enzyme CYP2D6 in tamoxifen effectiveness. Tamoxifen is often prescribed to block the effects of estrogen in breast tissue to prevent breast cancer recurrence in ER+ (estrogen receptor positive) cancers which require estrogen to grow and spread. Previous studies have already revealed that tamoxifen is less effective in women with reduced CYP2D6 activity caused by genetic variations or co-administration with medications that inhibit CYP2D6, but the mechanism of action for tamoxifen was not well understood.

    Tamoxifen is a pro-drug that is metabolized and converted into the metabolites endoxifen and 4HT; both previously believed to play a key role in suppressing estrogen. However, Mayo's study shows that endoxifen degrades estrogen receptors in breast cancer cells and is the key metabolite involved in the effectiveness of tamoxifen. Since CYP2D6 is the enzyme that converts tamoxifen to endoxifen; this study further indicates that widespread genotyping and medication management can improve outcomes for many of the 35% of ER positive breast cancer patients who currently fail tamoxifen treatment.

    On October 18, 2006, an FDA Advisory Subcommittee was convened to review the tamoxifen research findings to date and to make a recommendation regarding a label change. The consensus of the Subcommittee was that the label should be updated to reflect the fact that  postmenopausal women with ER-positive breast cancer who are CYP2D6 poor metabolizers treated with tamoxifen (by genotype or drug interaction) are at increased risk for breast cancer recurrence. This label change has still not been made, and now the case is even stronger.

    So, what can be done with this information to reduce the risk of breast cancer recurrence?

    First, genotyping should be considered for every ER-positive breast cancer patient taking tamoxifen. Insurance typically covers testing, and alternative therapies exist for treatment for the 10% of patients who are CYP2D6 poor metabolizers.

    Second, medication management involving the careful monitoring of tamoxifen co-administration with other medications, herbals, and over-the-counters needs to happen. For example, "hot flashes," a common side effect of tamoxifen, are typically treated with selective serotonin reuptake inhibitors, and fluoxetine, paroxetine and high doses of sertraline are notoriously potent CYP2D6 inhibitors. Additionally, 35% of patients are CYP2D6 intermediate metabolizers and are at risk with less potent inhibitors of CYP2D6 such as the commonly used herbal goldenseal.

    Mayo's study has confirmed the critical role of CYP2D6 in tamoxifen treatment. It is time to start putting this research to use in the clinic.

  • ashaby
    ashaby Member Posts: 200
    edited December 2008

    Darling Gals,

    Saw my obgyn last week and she said I'd only need an  ultrasound if I spot, which I'm not. So cool. One less invasion.

    It's been freezing here in the aftermath of an ice storm. We lost power  for about 24 hours and my husband was away so I had to be the pioneer wife with woodstove and kerosene lamps. Oh Little House on the Prairie!!

    Love you gals,  Basha 

  • VirginiaNJ
    VirginiaNJ Member Posts: 314
    edited December 2008

    Kashcraft- thanks for the article.  I just asked my onc about the test, and I think she would have done it if I pushed, but I didn't.  She basically said, well, if it's not working your option is for me to put you into menopause and she's fairly strongly opposed to that option.

    Basha- my gyn had the same reco for me and I was so happy!!  I had my annual just a couple of weeks ago and she said everything looked good so she wasn't going to push for the TVUS.  I was so happy...  She primarily agreed b/c I had tested negative for BRCA.

    Not much news to report on this end.  I basically did a big fat nothing this weekend.  I put up my tree...that's about it.  I have 40 people coming to my house on Saturday for an open house...one would think I would be cleaning...but noooooooooooooooooooo.  Just sat around and watched football all day yesterday thinking about all the things I need to do...  UGH.

    Hugs girls...

    Virginia 

  • Barbie7
    Barbie7 Member Posts: 126
    edited December 2008

    Kashcraft - thanks for the article.  I have my next onc appt. in January and I may ask him about the test.

    Basha - it is very cold here in Wisconsin too.  0 /-17 windchill.  Brrrrr....  all I want to do is stay home and bake things.  But alas... work calls.

    Virginia & Basha - I have another TVUS this Friday to follow up on some issues seen 6 weeks ago.  I've got so much pain down there, I'm a little afraid that this pain is here to stay.  But I'm thinking positively. 

    That's about all I have going on...  happy day all!

    Barbie

  • creampuff91344
    creampuff91344 Member Posts: 2
    edited December 2008

    Hey all,

    NED!!  Just reporting that today was my first mammo following tx, and all is clear.  The doctor feels like things are going quite well.  Have now got to get started on Tamoxifen, after having tried Femara for three months.  The oncologist says that this is a viable alternative since the side effects from Femara really knocked me down.  Today is a good day!

     bethu....just know that all of us on this forum have been where you are now, or are skating along beside of you.  We all have our stories, and yours will add to the knowledge that we all acquire here on this "sharing" spot.  Good luck on your last two radiation treatments.  With those behind you, you can look forward to sharing with us how you are doing.  It really helps to have these wonderful women (and men) to talk to and enjoy their encouragement.   Good luck!

    Judy

  • murphmort
    murphmort Member Posts: 76
    edited December 2008

    Good morning!  Thanks to all who have posted the informative and very helpful articles.  I learn alot from you girls, and appreciate the time you take to share.

    I had my six month checkup with my ob/gyn yesterday and she scheduled the TVU - after the first of the year.  I just didn't want to deal with 32 oz. of water and all that on my vacation!!!   Even though I tested negative for the BRCA, she wants me to come in every six months, alternating on the CA-125 and the ultrasound.  (My mom was diagnosed in '94 at the age of 58 with stage iv ovarian.)  I figure the more people checking me over, the better.

    I sent a package yesterday to the folks at Boston Medical, where I was treated.  They were so awesome to me, and who doesn't to receive fudge!???

    I have not done anymore shopping for myself ... I'm trying to stay out of the stores!  LOL!

    I hope all is well with everyone.  I'm off to a luncheon today where I'm sure there will be lots of delicious food.  But, not as good as Viriginia's ice cream, I'm sure! 

  • margot44
    margot44 Member Posts: 7
    edited December 2008

    I am about to start Tamoxifen next week too. I am at a very comfortable weight and hope to stay there!  I am very interested in building back my energy level after just finishing up 8 sessions of chemo and I HOPE not to have any side effects from the Tamoxifen.  I have also read that weight loss is a common side effect and that there is no proof at all that it causes weight gain. 

     I look forward to having contact with others just about to start Tamox so we can compare notes!

  • margot44
    margot44 Member Posts: 7
    edited December 2008

    I will be a Tamoxifen pal! I am going to start next week too.  I would love to have NO side effects at all but I'd take weight loss over weight gain anyday.  A lot of people said they gained weight with chemo and I was nervous about that but I actually lost about 5 lbs.  (4 sessions of A/C and 4 sessions of Taxol)  I am very happy with my weight right now and will continue to eat well & excercise - so I'm hoping that Tamoxifen only prevents bc recurrance - and nothing else!  Let's keep in touch!

  • Makratz
    Makratz Member Posts: 1,605
    edited December 2008

    I'd like to ask all you ladies that have been on Tamox for awhile - Have you gained or lost weight?  I have gained weight, about 7-10 pounds.  I eat well and exercise everyday, it just doesn't make sense.  I know everything tells you that Tamox may cause weight loss, but when I asked a nurse about it, she told me lot's of her patients tell her they've gained weight.  Let me know your story.

    Thanks!

  • creampuff91344
    creampuff91344 Member Posts: 2
    edited December 2008

    I started Tamoxifen today, and decided to take one-half a pill in the morning, and one-half at night before bedtime.  Several on this board have said that was what worked for them, and I am willing to give it a try.  I was on Femara (an AI0 for about three months, and my body rebelled against that drug almost immediately, so hope Tamoxifen is going to be a good fit for me.  Keep in touch after you start the druge, and let us know how it goes....as will I. 

    Judy

  • Barbie7
    Barbie7 Member Posts: 126
    edited December 2008

    Good morning ladies, and welcome to Margot and Makraz.  Here's what I understand about Tamoxifen and weight:  If you would naturally gain weight with menopause, then you may gain weight with Tamoxifen.  If you would naturally lose weight in menopuase, then you may lose weight with Tamoxifen.  So it is hard to tell which way you'll go.  Same thing with the hot flashes/night sweats.  My mom had very few (if any) hot flashes with meno.  Same for me on Tamox - but the night sweats are killin' me.  The best advice I can give is to give it a go for 6 months.  You can always jump off the train if you cannot handle the SE's. 

    Murph - I just had a followup TVUS yesterday.  I had one about 7/8 months ago when I started Tamox and then about 6 weeks ago.  The report 6 weeks ago had two complicated cysts they wanted to monitor with a follow up at 6 weeks - thus the US yesterday.  I hear ya on the water thing - not fun, but much, much better than the CT contrast!  I don't have results yet... probably sometime today.  The reason for all the testing in the first place is pelvic pain, bloating etc...

    Ride on ladies...

    barbie

  • kle
    kle Member Posts: 9
    edited December 2008

    HI, I also have a weight question for Tamoxifen users,  am I crazy or do I seem to be hungrier on Tamoxifen,  always needing a snack at night ( seems like I'm craving  more than before dx, just at night)  ....I have not gained weight yet ( 6 weeks on it), but if I keep snacking I think I will gain. I have to work on exercizing more.   So do u think you are gaining weight because you are eating more?

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

    WOW!   So many new faces on the Tamoxi-train!  Welcome to all the new tamoxi train riders!

    Just popping in to say HI to everyone!

    Hope everyone has Happy Holidays!

    HUGS
    Harley