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Bottle o Tamoxifen

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Comments

  • cs7777
    cs7777 Member Posts: 303
    edited October 2010

    That's an interesting study JanetinV, thanks for sharing.  For those curious about the 20 mg/day dose, early testing compared 20 mg/day to even higher doses, and the 20 mg/day dose was found to be just as efficacious as the higher ones and so 20 was picked as the standard dose.  To my knowledge they didn't go on to test even lower doses because 20 did well and wasn't overly toxic (according to their guidelines...don't jump on me for that) and so there wasn't much incentive to delay for more trials.

     Unfortunately, only so many doses and conditions can be tested in clinical trials and once the trial is over and a specific dose is approved then that's the standard.  For things that aren't life-threatening like pain, docs are pretty willing to vary doses from the standard, but generally they're much less willing to vary doses of drugs like tamox based on a guess that a small person might need less than standard, for example, for the obvious reason that the disease is life-threatening and they don't want to take a chance based on no data.  Unfortunately tamox was tested many years ago when there was less consideration in trials of a person's size or other factors. And now there's not much incentive to run new trials because it's generic.  Still I'm glad I have the drug and there are a few studies like the one JanetinV linked to that are happening that might stimulate more interest. Unlikely to result in changes for any of us, though. 

  • rgiuff
    rgiuff Member Posts: 339
    edited October 2010

    Yes, you can use the same tumeric that you use for cooking.  I got mine at an Indian food store, only cost me a couple of bucks.  I take about a quarter of a teaspoon.  I don't measure it exactly.  I just take what appears to be the amt. you would find in a capsule, sometimes a little bit more than that.  There are forums on here that discuss how to take it and that is where I learned that you need black pepper and olive oil to activate it. 

    I'm trying to get my husband to take it now because of his constant complaints about arthritis pains and he is only 48!

    Dorothy, not everybody has the same side effects, and pain really is not an issue for me, just a bit annoying at times.  The vaginal discharge also is just an annoyance, not really a big issue.  The hot flashes are an issue during the summer mainly when they really seem to kick in more.  The only thing that really is an issue for me now is the insomnia, but I've been told acupuncture could be good for that, so I may try that soon.  Didel, I see it helped you in that area, which is encouraging to hear.

  • cs7777
    cs7777 Member Posts: 303
    edited October 2010

    For those interested in dosing and relation to cyp2d6 genotype, there are a number of clinical trials looking at it, some of which are currently trying to enroll patients, e.g.,

    at Mt. Sinai in NYC:  http://clinicaltrials.gov/ct2/show/NCT00900744

    in Australia:  http://clinicaltrials.gov/ct2/show/NCT01075802

    in the Netherlands: http://clinicaltrials.gov/ct2/show/NCT01192308?term=tamoxifen&rank=9

    in Switzerland: http://clinicaltrials.gov/ct2/show/NCT00963209?term=tamoxifen&rank=14

    You can see many clinical trials (beyond just these 4) on tamoxifen by going to clinicaltrials.gov and putting "tamoxifen" in the search box on the page. 

    Hannahbears, you're in a clin trial for exactly this...do you know if your trial is the Mt. Sinai one or is it  a completely different one in your state?  Just curious.

    Interestingly, in all the trials I read, the studies plan to increase doses above 20 mg/day for poor and/or intermediate metabolizers, not decrease it for good metabolizers.  I suppose there's fear of losing efficacy and "doing harm" if lower doses than that approved for usage.

  • Hannahbearsmom
    Hannahbearsmom Member Posts: 266
    edited October 2010

    CS7777:   I checked my paper work and looked on the website you mentioned and found the  study that I am participating in at University of NC at Chapel Hill. Here is my study's link  http://clinicaltrials.gov/ct2/show/NCT00764322?term=tamoxifen&state1=NA%3AUS%3ANC&rank=2

    TCK

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited August 2013

    Morning gals!  I wanted to ask TCK & CS7777 a question about the clinical studies....Do you get to know what mg of the pill you are taking?  Or could you be taking a placebo?  I would like to know, because I was in a clinical study one time for Asthma, a certain medication....But had to be taken out of the study because the Asthma got really bad!  I might have been getting the placebo...or something that did the opposite of what it was supposed to do, which was to control the asthma.  TCK...how long have you been in the study?  I know they won't tell you much about it, but can you tell from the SE's any difference? 

    And cs7777, would a blood test like the one I get to show "tumor markers"  show if any cancer cells are active?  Can they tell if the level of Tamoxifen is enough to take care of this, by a blood test?  What I mean is ......Is there any test to show that we no longer have active cancer cells in our body?  I have been on Tamoxifen for 10 months, & would love to think that I am pretty much "protected" by now.........Thanks! xoxoxoxoxo

  • PatMom
    PatMom Member Posts: 322
    edited October 2010

    I am coming up on the halfway point for Tamoxifen.  I was doing an exercise class last year that seemed to aggravate the hip pain I was developing.  It was getting so bad that I was not able to cross my legs without pain.  I stopped the high impact class, and started taking a yoga class for survivors.  The pain is gone.  Exercise is good, but not all exercise is equal.  Tamoxifen acts like a hormone, and affects all kinds of things, including the connective tissue between your bones and muscles. 

  • ladym13
    ladym13 Member Posts: 107
    edited October 2010

    I have a quick question for you ladues, do you know if Vitamin B6 and B12 are okay to take while on the tamox?

    I am starting a MAJOR work out and change of eating and would like to boost my B6 and B12, just haven't asked my onc yet.

    I am determined to lose 15 pounds and get back to what I was before.

    Hope everyone is having a great day :)

    Mo

  • cs7777
    cs7777 Member Posts: 303
    edited October 2010

    ladym13, I take B12 as I'm a vegetarian and get little in my diet so my doc ordered it, and my onc had no objections, so at least my docs say its ok.  and they know i take a multivit with B6.  You should still ask YOUR docs, but this is my experience.  Good luck losing the 15 lbs!!!!

     ChevyBoy, at this point they would not withhold tamoxifen from you in a clinical study because of its proven benift to prevent recurrances and improve survival.  In other words, when they need a control group now to compare other tamox doses or other drugs to, it is the standard 20mg/day tamox they compare to, since it would be unethical to withhold known good treatment.  They may or may not tell you that they've changed your dose, although I suspect most of them probably do.  I recall Hannahbearsmom saying she knew they increased her dose. 

    To the best of my knowledge there are currently no blood tests that unequivocally demonstrate you have no active cancer cells in your body.  If there were, we'd all be getting the test I'm sure.  I agree it sure would be nice to have such an indicator, and I expect there's someone or other working on it!!  For cancers in general (I'm unfamiliar with specifics for BC, sorry), there are blood tests for tumor markers that give an indication of whether tumor activity is increasing or decreasing or becoming undetectible.  Unfortunately even undetectable just means that its below the level of detection of the test, and there may be small bits of live cancer still lurking in the body.  A friend of mine was in this position last year (different, non-BC cancer) and unfortunately the cancer returned.  As for tamoxifen duration, I was just looking at the long term trials data again yesterday and its very clear that increasing the time on tamox from 1 to 2 to 5 years definitely increased its long-term efficacy at reducing recurrances and improving survival.  There were good effects at 1 year, but better effects at 2 and even better at 5, hence the current regimen of 5 yrs.  My understanding is that after 5 yrs some of the SEs can become more dangerous and so the risk/benefit balance tips to risk and they stop most people at 5.  I don't know the details about it though. 

  • janet in virginia
    janet in virginia Member Posts: 923
    edited October 2010

    This is totally off topic.

    But, Chevyboy - your picture of the cat on the deck rail is hysterical!  Is that your cat?  How BIG is he/she??

  • Hannahbearsmom
    Hannahbearsmom Member Posts: 266
    edited October 2010

    Chevyboy:  I have been in the study since April of this year. I am definitely taking tamoxifen. I had the blood test to see how well I metabolize it and I am an intermediate metabolizer. At that point my dose was increased to 20 mg twice a day. Besides foot pain, I haven't noticed any real difference from being only on 20mg. I have been taking glucosamine and chondroitin to help with the foot pain and it does seem to be helping.

    TCK

  • cs7777
    cs7777 Member Posts: 303
    edited October 2010

    meant to also say earlier...thanks Hannahbears for showing the link to the study you're in.  :)

  • DMS
    DMS Member Posts: 4
    edited October 2010
    Hi everyone.  Glad I found this thread.  I finished radiation on 10/15 and saw the oncologist today and will be starting Tomaxifen tomorrow.  I'm post-menopausal and have been taking bisphosphonates for osteopenia.  Did any one stop taking these after starting Tomaxifen?  The bisphophonates were prescribed by my GYN and the oncologist said she doesn't support the use of bisphosphonates for osteopenia but didn't tell me to stop.  Given the latest studies, I'm inclined to stop. 
  • janet in virginia
    janet in virginia Member Posts: 923
    edited October 2010

    DMS - Hi there.  I'm waiting for a few more test results and don't know what hormone therapy I'll be taking yet.  Have seen 2 oncs and their recommendations have been polar opposite.  I'm post-menopausal too.  First onc says tomaxifen if metabolizing test is OK.  The second said absolutely not tomaxifen for post-menopausal (one reason because I still have uterus), but Arimidex.   Seems like teh standard has shifted to Arimidex (at least according to BCO info), so I'm curious what your onc said.  Hard to know what to think.

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

    Oh man, how can I lose a post just by minimizing!  DRATZ!  ANYway cs7777, thank you so much for answering my questions!  I knew I could count on you! Wink I printed off your post to read again & add to my note-book!  So interesting about the "tumor markers' blood tests.  At least we have that, to signal any changes! 

    And Janet, no that funny little cat is just a little guy I found on-line somewhere, & for the life of me I can NOT change my Avatar!  But he is cute!  We have a little Sheltie!  She is 7 years old & is actually our "other" Daughter!    I'll show a pic of "Princess Lacee"...

    This was last winter, Lacee's favorite time of year!

    I've been taking Tamoxifen for 10 months...I am older than you gals...So needless to say I don't have a uturus...I forgot what that was, by now!  I didn't want to take the other drugs, because I know that Tamoxifen used to be the only drug to follow up treatment with, & my Docs had said I would get Tamoxifen!  Yes, I take the vitamins, and I don't have any side-effects, (except the sleep/dream/think/dream/wake/dream cycle..Undecided) It's like my mind is ALways doing something!   And my knees hurt sometimes...but I think that just comes with the territory! 

    So have a fun day gals! xoxoxoxoxo

  • Lady_Madonna
    Lady_Madonna Member Posts: 313
    edited October 2010

    Well crap.  Saw my onc yesterday re: the Tam gene test and being an intermediate metabolizer.  Of course there are 100 varariables...not all onc's do the test, questionable how reliable the results are, may still get some benefit, etc.  BUT since I'm Her2+ some onc's don't give Tam to their Her2+ patients at all, let alone intermediate metabolizers.  There has been some research indicating that unmetabolized Tamox actually fuels bc growth in Her2+ patients.  Lordy, is there any definitive answer?!  So now she is recommending an ooph/hysterectomy and AI's.  

    The really, really ironic thing is that from almost the first time I met my onc she mentioned the ooph/hyst because of my high Ki-67 and after extensive research I decided I didn't want to do it- too much research showing higher overall mortality, especially when it's done in women in their 30's.  Now I'm back to that!  And, to add insult to injury, she tells me that it's possible I could have the ooph and find out that my body can't handle AI's and she'd HAVE to put me back on Tamox!!  ARRRRGH!!!

    Boo hoo....  I just want to take my happy little pill and be done with it... :(   What I will do is go talk to another onc and get a 2nd opinion.  May even go to the "guru" of the CYPD26 test at the Mayo clinic in Rochester to see what he has to say.  It stinks making these kinds of decisions!  

  • in_cognito
    in_cognito Member Posts: 87
    edited October 2010

    Chevyboy - Princess Lacee is a beauty!  I love her fur!

    Lady Madonna - Ugh, so sorry to hear what your Onc suggested.  As you know, my Onc would love to have my ovaries!  Still thinking about that, but will likely succumb - maybe next year.  Can you do Lupron or Zoladex with an AI to "test the waters" so to speak???? 

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

    Lacee thanks you, Ha, ha!  But  this Summer I had to trim her looooong fur & hair, because she got "hot spots" so bad, she is still on an anti-biotic.  So the Vet told me I had better trim her down...a lot!  But she loves it now!  She waits for me to pick her up & put her on the picnic-table to put the medicine on her "spots" & brush her & tell her sweet things!  Wink  But those spots are so much better!    Right now, she is laying outdoors in the leaves dreaming of "snow!" 

    Lady Madonna....I KNOW Oncologists are all different!   I don't know about the HER2, just the  ER & PR positive!  There are other pills out there, if you can't take one....I mean like Femara, or Arimidex ....but I think your young age has something to do with all this!  But that is so good that you are really checking into this! 

    And man, I wouldn't advise anything about a hysterectomy, unLESS there were a worry about little cancer cells hanging around in there.  These are things you have to ask!  Has an Oncologist given you blood tests showing "tumor markers?"  That MIGHT give them an idea, like cs7777 has said. 

    Okay...gotta go rake the leaves!  Man this wind her in Denver has been rattling everything!  xoxo

  • DMS
    DMS Member Posts: 4
    edited October 2010

    JanetinVirginia- I thought the same thing about the use of AIs in post-menopausal women but learned yesterday that AIs aren't a FDA-approved treatment method for DCIS since there haven't been completed studies that demonstrate its efficacy.  I took the first dose of Tomaxifen this morning and haven't experienced any hot flashes yet.  Hope it stays that way.  I went thru what my husband called the anit-menopause without hot flashes and night sweats.  We'll see.  

    PS I'm in Montgomery County MD 

  • cs7777
    cs7777 Member Posts: 303
    edited October 2010

    Hi to the new gals!  Glad to hear people are getting 2nd and 3rd opinions wrt which drugs and why.  The AIs are more and more given to postmenopausal women instead of tamox, but, DMS you bring up a critical point - they haven't been tested for certain conditions like DCIS.  Some docs will use them anyway since for IDC they give a slightly better non-recurrance effect (no improved survival though) so they assume that it will do same for DCIS.  Other docs are more conservative and stick with tamox because they have hard data about it for that condition.  Re the bisphosphonates, they're actually starting to be used as anti-cancer treatments too, so it would be unlikely your onc would tell you to stop.  There is debate about their efficacy for osteopenia, which probably accounts for your onc's comments though. 

    Chevyboy, please don't get me wrong, for BC specifically I'm unsure of what blood markers there might be to indicate BC activity, rather, what I meant in my note yesterday was that for some # of cancers there are blood markers that are used to track activity so the idea you had about blood markers was valid.   Personally, I've never had any such tests for my BC, but my case is one in which it wouldn't have made sense.  I would expect that ladies with metastatic BC (stage 4) have some blood markers checked but I'm speculating.

    LadyMadonna, I'll say ditto to what in_cognito said - would it be possible for you to try ovarian suppression (lupron) plus an AI and make sure you tolerate the AI well before you have an ooph/hyster?  Seems worth asking.  In addition, it should be recognized that an intermediate metabolizer of tamox DOES metabolize it, just not as well as a full metabolizer (or whatever term they use).   In addition, it seems like more and more doctors are considering increasing the tamox dose for intermediate metabolizers in particular, and even for poor metabolizers.  It seems like you might ask your doctor about that possibility as well.  Hannahbearsmom is on such a regimen herself.  Also, I just saw the abstract of a study yesterday wehre they showed that if they increased tamox from 20 to 30 mg/day, all of the people with suboptimal levels of the metabolite endoxifen were brought to what they considered "good" endoxifen levels within 14 days.   (A really interesting, although troublesome, finding was that there were women with low endoxifen levels in all of the cyp2d6 phenotypes, although they were more common in the poor metabolizer group.  To this they concluded that it's likely that other gene variants are involved in Tam metabolism, which isn't surprising given that it's a multistep process.)  What I couldn't discern from the abstract was how they had defined suboptimal vs optimal endoxifen levels, although I would guess it was from prior data showing typical levels of endoxifen in the majority of "full metabolizers".  Anyone interested can find the abstract here: http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=51447

    Anyway, if she believes the cyp2d6 test is relevant to tamox, then she must believe endoxifen level is too, so you could inquire about whether your dosing could be adjusted, based upon endoxifen levels in the blood.  I will freely admit that I have NO idea how the her+ status works with tamox, so I am mentioning all these things your might ask your doctor(s) about in the absence of that.  Raising the dose of tamox should lead to more endoxifen but also more unmetabolized tamox, which you'd have to consider. Ugh -  I feel your pain regarding there never being a specific answer,  That's one of the things I found so surprising and painful through all of this, even in my early stage supposedly simple straightforward case of BC.  Sigh.  Hugs and best of luck to you making these hard decisions!!!

    CS

  • rgiuff
    rgiuff Member Posts: 339
    edited August 2013

    Lady Madonna, I would fight to keep those ovaries.  If your onc wants to put you on AIs, you should ask why you can't just have your ovaries temporarily suppressed by zoladex or lupron.  At least then, you'd have an idea how menopause might affect you.  It sounds too risky to me, that you could end up losing them all for nothing, only to end up right back where you started from!  And from reading these boards, I see that there are women who tolerate an ooph ok, but then there are others who seem to really be destroyed by it.  You don't know ahead of time which category you will fall into.  Being that you had a Stage 1 cancer, you should ask your onc what your chances are of cancer returning based on your stats, by how many percentage points each medication or treatment such as ooph, is expected to reduce your risk, and then you can decide how aggressive you feel you need to get and whether the slightly increased benefit is worth going into surgical menopause over.  You can also check out Lifemath.com or Adjuvantonline.com.  (On Adjuvant, you have to register as if you were a medical professional.)   On these sites, you can type in your individual stats and then it gives you an idea of how much a certain treatment will help or in some cases, not really offer that much additional risk reduction.

    You can also check out the Natural Girls forum for ideas on natural ways to reduce your risk.  Diet is hugely important, as is exercise and certain supplements such as vitamin D, tumeric, green tea etc..

    A second opinion also sounds like a good idea to me.

  • phxsunshine
    phxsunshine Member Posts: 156
    edited October 2010
    ladym13:  I am seeing a Naturopathic Oncologist and one of the supplements she put me on was B-Complex.  B vitamins are water soluble, good for stress and boy BC is stressful!  Good luck to you.
  • sunshines
    sunshines Member Posts: 5
    edited October 2010

    Started tamox the middle of Sept. after trying Arimidex and Femara. The later both made me so tired, onc had me try tamoxifen eventhough I am post-menopausal.  After suffering from migraines for the last 20 or so years, (I usually have 3-4 a week) I have not had one since being on tamoxifen-(after the first week).  Hormonal headaches are gone-if one month is enough time! I am so happy!  why did tamoxifen had a different effect than arimidex and femara, even though all these drugs block estrogen?  A and F actually increase my headaches, weird. When I talked to my BS about it, he said I should do fine on taxom, you lose a little bit of benefit compared A, but it is better for you bones.  My problem is I still have my uterus.  Not sure how concerned I should be about that.  I love not having Migraine!!!

  • rgiuff
    rgiuff Member Posts: 339
    edited October 2010

    Sunshines, so glad that the tamoxifen is having a good effect on what was a big problem for you!  I would not even worry about the uterus, since the risk of uterine problems is so low.  And you can get the uterus monitored once or twice a year by your Gyn via transvaginal sono.  This is what I do and so far with almost 2 years on tamoxifen, I've had no uterine problems.  I'm perimenopausal, rarely get periods anymore.  During my first year on tamoxifen, I did feel some pelvic pressure and there was a little thickening of the uterine lining, but on my last sono, it had gotten much less thick.  And I no longer have the pelvic pressure.

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

    Morning gals!  Oh cs7777 what would we do without you? WinkYes, you are so right!  The oncologist had told me the same thing, but in my little mind, I assumed it was for BC!  So it's nice to know it might pick up little cells anywhere!  I THINK she does it also to compare to the last test?  That sounds reasonable. 

    Sunshine....I think the differences in those meds are... Tamoxifen does not block your estrogen, it just blocks estrogen from feeding any cancer cells...so in other words, your estrogen is still running around in there, giving you SOME benefits.  The other two, Arimidex, & Femara DO block any estrogen...and I think that is why some gals have more SE's than with Tamoxifen. 

    At least that is how it was esplained to me...Also, with Tamoxifen, you don't usually have any "bone loss" as with the suppressors....because your estrogen "helps" with that.  cs7777 ....is that right?   And thank you for the link!  I think the more questions we ask, & try & find answers, just helps us all!   xoxoxoxoxoxoxo

  • jan508
    jan508 Member Posts: 724
    edited October 2010

    Been on T for a week now.  Only side effect is nausea.  Always 'feel' like I'm going to get a hot flash but it never materializes.  Hmmm....what's up with that?

    Honestly, I'd rather have the flashes instead of the nausea. 

    How long into the meds would the side effects start to show their ugly head?

    Jan

  • jan508
    jan508 Member Posts: 724
    edited October 2010

    Been taking T for one week now.  Only side effect so far is nausea...I sometimes 'feel' like I'm going to get a flash or something but it never materializes.  Hmmmm....what's up wit

  • cs7777
    cs7777 Member Posts: 303
    edited October 2010

    jan508, i had nausea at the beginning too, sometimes for a couple days at a time but mostly just in intermittent bouts every day or several days.  Luckily it subsided fully after about 3 months.  I hope yours will too!!

    sunshines, I'll add to what chevyboy wrote.  The AIs and tamoxifen are different in that the AIs block the formation of estrogen by parts of your body, while tamoxifen binds to the cells where estrogen normally does (i.e., the estrogen receptors) and modulates the function of those cells differently than estrogen would.  More specifically:  When postmenopausal, your ovaries no longer make estrogen, but your adrenals still make some, about 25% of the total you had premenopause.  The AIs block that adrenal production, so now your body (and any BC) is truly deprived of estrogen.  Tamoxifen, in contrast, is actually an estrogen-like molecule that binds to the ER, and in some tissues like breast (and BC) it BLOCKS the action of your natural estrogen and in some tissues like bone it acts LIKE estrogen.  Plus, on tamoxifen, you still have that 25% of your own estrogen around still competing for the ER too, although the biology suggests that it's a poor competitor (at least in BC cells).  To the point of your migraines: the ER's are located in many tissues, so estrogen (and therefore tamoxifen) acts in all of those, and so it's not too surprising that your migraines are different (luckily BETTER!) in the presence of tamox than when you were taking the AI.  I hope that all makes sense!

  • sunshines
    sunshines Member Posts: 5
    edited August 2013

    Thanks chevyboy and cs7777 Thanks so much for explaining this, although, I will have to read it several times to fully digest it, I do want to understand the differences.  I just love not have migraines and can't stop smiling and dancing about that. 

    so in simple words, my body is still producing estrogen, the tamox is attaching to the ER, lets say in the breast, to stop estrogen from bother it-is that it?

  • cs7777
    cs7777 Member Posts: 303
    edited October 2010

    Yep sunshines that's essentially it.  That's so great that your migraines have stopped.  At last, a GOOD side effect for someone!  (Well, tamox helps us build bone too, but we don't feel that one.)

  • JustmeAlicia
    JustmeAlicia Member Posts: 629
    edited October 2010

    I had that nausea in the beginning too.  Lasted about 2-3 weeks.  I had no apetite as well.  Lost a few lbs at first.  (still losing a bit but lots of dieting and exercising going on)  Hopefully it will pass for you. 

    Hope everyone is fairing okay on the tamoxitrain !

    :)