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Bottle o Tamoxifen

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Comments

  • cancersucks
    cancersucks Member Posts: 100
    edited July 2010

    Hi ladies,

    Is there a list of what suppresses Tamox? Also regarding the metabolizer test, is it the real deal? Some oncs don't believe in it, some do? Any thoughts? If they don't know how am I supposed to know?

  • bcamnb
    bcamnb Member Posts: 334
    edited March 2010

    Hi cancersucks,

    Google phytoestrogens and then avoid all the foods/drinks that are high: flax, soy,....

    Google tamoxifen and it will tell you some of thre major meds to avoid: some antidepressants, benedryl....

    For me the test was very important. It proved I am an intermediate metabolizer - so I have been prescribed an addition 10 mg of T and I go to great pains to avoid ANYTHING with estrogen/phytoestrogen... google Genelex

    Best wishes

    C

  • MTG
    MTG Member Posts: 337
    edited March 2010

    Cancersucks  (love the nameby the way)"

    In addition to Caroline's suggestions, for lists of drugs that interact with T:

    http://www.drugs.com/drug-interactions/tamoxifen.html  

    see also : http://medicine.iupui.edu/clinpharm/COBRA/TamoxifenGuide.pdf

    and If you are more scientifically savvy and want more detail try here --http://www.medicine.iupui.edu/flockhart/

    Technically, there are 78 drugs that are Major Inhibitors, 179 Moderate Inhibitors and a handful on Minor ones.

    As for the cyp2d6 test, I'm right in the middle of this - was just diagnosed as a Poor Metabolizer of Tamoxifen via the cyp2d6 test (and had been part of the study until just recently) and so may be able to shed some light.

    The biggest controversy is a recent study, the conclusion of which seems often to be misread. As I understand it, the study found that there was no difference in SURVIVABILTY between poor metabolizers and good metablolizers of Tamoxifen. The problem seems to be that many people read the conclusion as being that there's no difference in RECURRENCE     - a very different finding. See  http://community.breastcancer.org/forum/78/topic/747562?page=2#post_1735538

    Another controversy is that the cyp2d6 test is not yet the standard of care and there are other (albeit less efficient) enzymes that apparently can/may metabolize Tamoxifen into endoxifen  so many doctors prescribe Tamoxifen without concern about a cyp2d6 test. Also, if your premenopausal and unwilling to be chemically put into menopause, there's no option other than T so some people would rather just not know.

    If you're interested, there's a good amount of discussion on this board. See, http://community.breastcancer.org/posts/search?commit=Search&search_builder%5Bauthor%5D=&search_builder%5Bdate_range%5D=&search_builder%5Bkeyword%5D=Cyp2d6&search_builder%5Bsource%5D=&sort=score

    Hope this helps.

  • nwood450
    nwood450 Member Posts: 38
    edited March 2010

    bcincolorado:  thanks!  I appreciate your input.  I called my PS today and have an appt. on 4/13. Sometimes its hard to make these decisions ... I'm going with my gut.  I have a good feeling about this doctor so that's good enough for me. Sometimes you just have to let go and trust. I hope that I'm ready for this next phase.  Thanks for your kind words.

    Gina:  I think I missed an entire page of this thread.  You sound so much better.  So good to "hear" a stronger voice!  I am so glad you are feeling stronger.  Prayers are still with you my friend.  xoxo

    Nancy

  • bcincolorado
    bcincolorado Member Posts: 4,751
    edited March 2010

    MTG:  Glad I mis-understood!  I could't imagine how bad that was.  I get about 3 or 4 each night and get up and either kick off covers and/or depending on severity get up and get and ice pack and a cool drink.  Of course then I wake up a little later cold and cover back up!  Thanks for the links!

    Nwood:  You definitely need to go with your "gut".  It's got to be what YOU want.

  • hood1980
    hood1980 Member Posts: 168
    edited March 2010

    Hi everyone!  Just wanted to thank Linda54 & Juli-CA about their info on giving up sugar & the less hot flashes, I will have to commit to that at some time in the future.  Right now I'm trying to come off the Effexor I've been on that is suppose to help reduce the hot flashes but I'm not sure it works much so I am tapering off of it over the next 3 - 4 weeks.  I will try to taper off the sugar too, but it's definitely a tough addiction to get over!!!

    BTW- MTG, is there a story behind your avatar picture?  I love the boob mold!  My upcoming 2 year cancerversary is coming up & that would be a coute way to celebrate, but I'm sure it has sugar in it!!!

  • cs7777
    cs7777 Member Posts: 303
    edited March 2010

    Hmm, in response to cancersucks asking about what might interfere with tamoxifen, I'm going to offer a different perspective about phytoestrogens (PEs), namely, that you don't have to avoid them all.  (For anyone who doesn't know, I'll mention that phytoestrogens are a class of varied compounds in various plants that have estrogen-mimicking effects in the body.)  Instead, it really depends on the PE, since the ones in different plants are different and have different abilities to modulate estrogen pathways in the breast and/or interact with tamoxifen. 

    There are very good data now on flaxseeds showing that the PEs in them do NOT interfere with tamoxifen, and in fact there's data showing the combo of eating flaxseed plus taking tamox is more powerful in inhibiting BC tumors than tamox alone. (e.g., see http://tiny.cc/cp1i7   and other papers by LU Thompson).  In addition, separate from tamox interaction issues, flaxseed in the diet has been shown to have powerful anticancer effects in BC (e.g. http://www.ncbi.nlm.nih.gov/pubmed/15897583 ).  All of these data (and more) make me very comfortable eating flaxseed, indeed, many cancer nutritionists encourage cancer patients, including those on tamoxifen, to eat flaxseed (e.g., see a summary of why its good on p. 26 in http://cancer.ucsf.edu/crc/nutrition_breast.pdf ).

    The data I can find are more mixed for the PEs in soy (which are different than those in flaxseed), so I can't make a good argument one way or the other about soy (but see p. 27 in the pdf doc above for a summary of data). There's at least one study showing that sesame seeds, which also contain a type of PE, can inhibit the effects of tamoxifen, but it appears to be less studied than either soy or flaxseed.  I haven't studies a lot of others.

    So in sum, I would offer the opinion that you don't have to avoid all PEs even if you're on tamoxifen, and for me I'm happy to get the known anti cancer and other health benefits of flaxseeds as well as not worrying about it interfering with my tamox.  But, as I said a couple of days ago, each person needs to assess what's known & unknown for yourself and decide what makes sense to you.  I can write a description of the biology background of PE, estrogen & tamox interactions, but for the sake of length I have not.  Let me know if anyone wants me to.

  • bcamnb
    bcamnb Member Posts: 334
    edited March 2010

    cs777

    MANY thanks for taking the time to post all the links and comments. WOW

    I need to print some of this stuff out and send it to the Centre who are supporting me. So much of it is totally opposite of what I've been told!!!!!

    C

  • cs7777
    cs7777 Member Posts: 303
    edited March 2010

    No problem bcamnb.  I'm not sure what different places base their recommendations on and for all I know your centre might have good reason to tell you what they have.  It's certainly worth asking.  Personally I will say I'm amazed at the dearth of knowledge even really well-regarded oncologists have about basic nutrition, but that's another whole issue I won't bore you with!

    Best,

    C

  • bcamnb
    bcamnb Member Posts: 334
    edited March 2010

    cs

    I absolutely agree with you about the lack of info onc's have. And also, T has been prescribed for decades WHERE IS THE RESEARCH??? on interactions - except all over the place.

    I was given MY info by the cancer pharmacists and a physician who heads up a breast cancer support centre (as well as doing a lot or on-line reading as I am only an intermediate T metabolizer and have been paranoid about not taking anything that will interfere with T).

    C

  • peg119
    peg119 Member Posts: 190
    edited March 2010

    Hood1980

    I also weaned myself off of Effexor since I didn't think it helped at all.  I am now trying the vit E but am not taking enough yet so haven't really noticed if it helps.  Most people say you need between 800 and 1000 units and I am only taking 300 at present.  The vit E I bought are only 100 units and I really don't feel like popping that many pills so will keep it low until I get around to buying a higher strength.  It seems all I do these days is take pills and vitamins.

  • Hannahbearsmom
    Hannahbearsmom Member Posts: 266
    edited March 2010

    cs7777:  Very interesting links. I bookmarked the UCSF nutrition info so I can go back and read it closely when I have more time. I really haven't done much research on the nutrition side of things and I know that there is definite room for improvement in my  eating habitsUndecided.

    Hopefully I will be able to enroll in a tamoxifen metabolism study that is being done at the cancer center where I am being treated. They will draw the blood test and then do followups and adjust dosage if needed. I don't know all the details because I had not been on tam for the required 4 months when I had my last onc appt. At my appt in early April, I will get more info and hopefully enroll. If that doesn't work out, then I am going to ask my onc to order the test.

    Have a good night tamoxifriends!!

    TCK

  • Psalm121
    Psalm121 Member Posts: 179
    edited March 2010

    Caroline & MTG:

    Thanks SO much for all the info....I'm so upset now I could cry!!  I called my Onc office last FRI to get prescription refilled for Restoril (small dose, can't remember) anyway....nurse tells me it's only prescribed during treatment and I should just pick up some TylenolPM, MotrinPM, etc.  I said, but they have Diphenhydramine in them and that conflicts with Tamoxifen and she said "NO, you can take them."   I doubted myself and let her over-rule my better judgement!  I will print this information and FAX it to their office if I have to, to get them to listen to me!

    What can I take to get some sleep?  I don't have trouble falling asleep, I just can't stay asleep.  I have neuropathy in hands/feet and the pain and burning wake me up and I can't go back to sleep.  I've been back to work since Feb 8th and starting to get really depressed and frustrated that I work so hard and am so tired but can't rest.  WHY won't they listen to us?

  • bcincolorado
    bcincolorado Member Posts: 4,751
    edited March 2010

    Psalm121:  Maybe your local pharmacy might have a good suggestion for a temporary sleep aid?  If you are getting to sleep and not staying asleep, you aren't alone.  The hot flashes wake me up at night.  There should be something you can take to help with the other pains you are getting in the night to wake you though.  If you're getting no where with the onco office, try your regular doctor and maybe they can help.  I hope you have a restful night!  I know it is tiring waking up all the time in pain!

  • Psalm121
    Psalm121 Member Posts: 179
    edited March 2010

    Thanks, Colorado:

    yeah, between the feet burning and the hot-flashing I'm constantly un-covering, re-covering, moving feet around, trying to get comfortable....as much heat as a hot flash causes the cold afterward is just as extreme!

    I will be checking with my primary care doctor....with my Tamoxifen interaction list in hand!

    It's just frustrating that the very people that put us on this stuff are so un-informed/un-concerned. I'm learning that standing up for oneself is a never-ending process.

  • bcincolorado
    bcincolorado Member Posts: 4,751
    edited March 2010

    Hi Psalm121:

    Yes, you have to be a strong advocate for yourself and when you can't be you need someone you trust to be on your behalf.  Since I'm married to someone who has a lot of medical issues, we learned during the past 10+ years to not be afraid of the doctors and call them when you need to and ask the questions you need and complain if you need to!  Even change doctors if you have too (we had to for him).  Hang in there.  We're all pulling for you!

  • bcamnb
    bcamnb Member Posts: 334
    edited March 2010

    Stayaing asleep is a real problem for me as well - and who knows why I wake up....I get several hours at a stretch, then I am awake again. I was taking T just before I went to bed. I am now trying it with my dinner to see if that might make a difference in my sleep. I'll let you know

    C

  • peg119
    peg119 Member Posts: 190
    edited March 2010

    I agree with all about falling asleep and staying asleep.  I had my primary prescribe Lunestra but even with that I still wake up a lot.  I have tried Melatonin and it seems to help sometimes.  I think some of the problem is with T and some just with menopause.  It is not fun either way.

  • bcincolorado
    bcincolorado Member Posts: 4,751
    edited March 2010

    Well I managed to make it until about 3 before I had to go get an ice pack last night.  I know I disturb my husband too.  It wasn't long after I got back to bed that he got up and couldn't get back to sleep until almost 5.  I know on his sleepless nights I usually get on him about watching TV (he plugs it in so it won't bother me) since I am convinced that he gets wrapped up in Sportscenter (the 8th airing of the same show!) and won't sleep because of that.  So....when I wake up I just lie there and toss and turn until I can't take it anymore and then go get the ice.

    My onco has me taking tamox 2x day and I do 7:00 for each since it coincides with husbands' med time it works well.  It doesn't seem to help after the full tummy but might be better than right before bed.

  • rgiuff
    rgiuff Member Posts: 339
    edited March 2010

    I agree with cs777 about the phytoestrogens.  After learning about how many healthy foods they are in (legumes, fruits, vegetables,  fibrous grains), I said to myself, no way am I going to give all these up.  They are the foods that I mostly eat and that help prevent many diseases.  And I've read many books and gone to many natural health conferences where they talk about how phytoestrogens crowd out the bad estrogens and have similar actions to tamoxifen.  Granted, they do have a very weak estrogenic effect on the cells they get into, whereby tamoxifen blocks the cell against any estrogen getting in.   What all this means to me is that in case tamoxifen can't "catch" all of the estrogen floating around in my body, I feel that the phytoestrogens will be there to dilute some of it as well and if they do get into some of the cells, their effect is going to be much weaker than regular estrogen..   I have cut way down on meats and dairy, because I feel that these are full of added hormones that may be harmful.   And when I buy dairy products, I look for the ones that don't have the added growth hormones, milk I've started buying organic.  Many vegetables and fruits also have pesticides sprayed on them, which are estrogenic in nature, so I'm trying to get as many of these organic as I can afford.

    For those of you having trouble staying asleep, this is my problem as well.  The loss of estrogen in menopause is known to interrupt a full night of sleep, as well as any of these meds, like tamoxifen that upset normal hormonal balance.  I have tried so many things.   With melatonin, I found it helped me fall asleep, but I still woke up after only about 4 hrs. I've recently been trying valerian, which also gets me to sleep, but also doesn't always keep me asleep.  I've found ambien to be the most reliable, but I rarely take this, as I don't want it to lose its effectiveness and worry about the effects of taking it regularly.   I save it for a night that I suspect I won't be able to sleep and really need to.   I've also read that passionflower is supposed to help, haven't tried it yet, as well as a combo of passionflower, valerian, and hops (For those of you opposed to phytoestrogens however, the hops is known to be phytoestrogenic).  I've started taking my calcium, magnesium, and vitamin D shortly before bedtime, as this is also supposed to help, and sometimes, I think it does.  I've been sleeping an average of 6 hours lately, which is great for me, but like hot flashes and many other symptoms, seems to come and go in cycles.

    I've switched around the time I take my tamoxifen, usually because of a missed dose, then will move up the time by several hrs, so I've taken it  on morning, afternoon, and night schedules, and don't find that the time affects any of my symptoms in any way.

      Most of the time, it's the urge to urinate or a hot flash that wakes me up, so I'm being more vigilant about drinking a lot of liquids up until 9 pm, then try not to have any more.  For the hot flashes, I've tried tincture of rhubarb (an herbal recommended by my Onc), which did seem to kick in and get rid of them after about 3 weeks of use.  I used it for a month, then stopped to see if they would come back, and they didn't until about 2 months later.  Now, I'm probably going to order another bottle and start taking it again.  

  • Sparrow
    Sparrow Member Posts: 80
    edited March 2010

    Rose, that was an interesting post.  I've been eating a mostly vegetarian diet for years.  I'm not going to give up black beans.  It seems everything healthy has some phytoestrogens in it.

    It's been a week since my transvaginal ultrasound.  My gyn must have the results by now.  If she doesn't call me by friday I guess I'll call her.  I haven't had any hot flashes with Tamox, just joint pain, pelvic pain that's always there and some bad mood swings.  If the ultrasound turns out normal I guess I'll stick with the T hoping all this stuff will diminish with time.  As bad as it is I'd rather deal with constant pelvic and joint pain than another BC.

    My mom has stage IV BC with mets to her lungs and bones.  My brother called this weekend and said she's not doing well.  We are all planning to fly out to CA for her birthday in May as a surprise.   I'm trying to wrap my mind around possibly losing my mother.  It's hard.  I'm on 225 mg of Effexor XR as of today but I don't think there's a pill that can make this any easier.

    Ugh, sorry to unload!  Everyone enjoy the sunshine if you have it-  we do!  :) 

  • cs7777
    cs7777 Member Posts: 303
    edited March 2010

    Sparrow, So sorry to hear about your mom's condition.  Big hugs to you, and the strength to deal with it all. 

    I don't know how long you've been on the tamox, but to give hope to anyone who's just a month or two in I will say that in the first 2-10 wks I had some yucky side effects (a few days each month with pelvic pain, VERY tired, headaches, nausea; an extra period thrown in the middle of a month for no good reason) but now after 4 months all that's stopped.  I have a few extra hotflashes compared to before (I'm 47 and peri-menopausal), but thankfully not bad now.  The ongoing thing is an odd skin condition on my hands - I get patches of little bumps that after a couple weeks get all dried up and the skin is flaky, and then it goes away.  Not red, itchy, or painful, just little bumps.  Anyone else have such a thing?  I've been slathering my hands w/super-lotion and keeping them out of water and that has helped w/the dry flaky part, but the bumps come & go.  Odd. 

    I guess my point to others is that if you have crappy side effects in the first few weeks or months it IS possible they may subside as mine mostly did, so let's hope that happens for more people than not.  And if anyone has anythign to say on the skin thing I'd be interested to hear. 

     CS

  • cs7777
    cs7777 Member Posts: 303
    edited March 2010

    Oh, about foods, I relate a lot to what rgiuff said.  That pdf that I linked to yesterday comes from UCSF and I went to a lecture by one of their cancer dieticians that was really interesting.  The general "anti-cancer" diet that they (and many others) recommend includes AT LEAST 5-9 servings of colorful fruits and vegetables a day, and the funny thing is that my first reaction was "I'm a vegetarian and I don't even eat that many on a consistent basis!"  LOL!  I'm making a big effort to sub in fruits & veggies where I used to grab chips or bready things, and added flaxseed, and got my vitamin D up to snuff (nearly everyone is low on that, amazingly enough). 

    For anyone sugar addicted, my approach to breaking that a few years ago was to really really slowly remove some, rather than doing it cold turkey.  E.g., I put sugar in tea, so inst of putting in two tsp I put in a little less, and then finally only 1 tsp, and then less & less and finally none.  That way it never tasted bad, as the changes were just incremental and I never felt deprived. Anyway, just a thought for an alternative to cold-turkey on sugar.

  • kcl65
    kcl65 Member Posts: 741
    edited March 2010

    Hi Ladies,

    Wow a lot of great info, but first let me say...

    SPARROW~ I am so sorry to hear about your mom! Please unload on us anytime, that's what we're here for... to support you during a rough time! I will be praying for you and your family. ((((hugs))))

    CS7777~ Thanks for all the interesting info, I will read it all and absorb it slowly... LOL!

    CAROLINE & RGIUFF ~ I too have trouble staying asleep and I seem to dream a lot... some days I feel totally sleep deprived and not as quick as I used to be... Surprised Anyway, I will have to try taking my calcium and vitD before bed and see if that helps.

    How are you doing BONNIE, SUSIE, and HARLEY?

    Hugs to all,

    Kelly :)

  • nwood450
    nwood450 Member Posts: 38
    edited March 2010

    Stopping in for a quick peek... I have a lot of catching up to do on this thread but saw Sparrow's news...

    Sparrow:  So sorry to hear about your mom ... We are all here for you, anytime ... Love and prayers are with you xo

    Nancy

  • bcincolorado
    bcincolorado Member Posts: 4,751
    edited March 2010

    Sparrow:  I am so sorry to hear about your mom!  If she is like most moms, she is more worried about you right now than herself.  It might be good for her to see you too.  I hope you have a trip that is fun and not just full of "medical stuff" like ours seem to be when we visit family. 

    I thought the idea of taking the calcium at night seems to help.  Since my docs all want me on calcium w/Vit D and I prefer to take Viactiv chews (I hate pills) I could have that for an evening snack before bed instead of a mid-morning one at work.  It sure can't hurt!

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

    Morning girls!  Sparrow.....I'm so sorry about your Mom.....I know how it is......Just be there for her....I don't know what else to say...(((((sparrow)))))

    And I can't stay asleep either!  That is my main thing with Tamoxifen....And I feel like I am always dreaming!  So after reading your posts, I googled it all, about the vitamins, & found this! Now I'm taking my Vitamin D & Calcium after dinner, instead of breakfast.....

    Vitamins Help You Sleep Better and Cure Insomnia

    by Melanie Grimes, citizen journalist
    See all articles by this author
    Email this author


    (NaturalNews) For better sleep, the body needs healthy foods and nutrients. Many nutrients are known to have a calming effect on the nervous system and help promote good sleep. Whole foods contain many of these natural insomnia cures, but supplements are also available to ensure that you obtain the proper dietary amounts.

    Calcium
    is nature's tranquilizer. Some feel that calcium is best absorbed in the evening, suggesting that the folk medicine suggestion of a glass of milk before bedtime might be a good idea. Natural forms of calcium are dairy foods as well as green vegetables and sesame. A spoon of sesame seeds has ten times the calcium as a similar amount of milk. Spinach is also high in calcium. Take 1000 milligrams of calcium daily.

    Magnesium
    is needed to absorb calcium. Many calcium supplements also contain magnesium. Epsom salts are made of magnesium and an Epsom salt bath is one way to absorb magnesium. Magnesium is a muscle relaxant as well as important for balancing blood sugar and blood pressure. Natural sources of magnesium are halibut, peanuts, whole grains, spinach, bananas, avocadoes, and nuts and seeds. Diabetes and those on diuretics need to insure proper intake of magnesium, as much magnesium is lost through urine. Symptoms of deficiency are muscle spasms, nausea and loss of appetite.

    Vitamin D
    is another nutrient needed to support calcium uptake in the body. Milk products are regularly fortified with vitamin D. Research has shown that it is difficult to obtain enough vitamin D from exposure to the sun, especially in winter months, or north of New York or San Francisco, so supplementation is advised.

    L-theanine
    is one of the ingredients of green tea. This amino acid is known to have calming properties. R-glutamylethylamide is the full name of the chemical. Research has shown theanine to calm the brain by producing alpha waves. Aside from its calming effects, theanine may also lower blood pressure.

    5-HTP
    is the abbreviation for L-5-hydroxlytryptophan. L-Tryptophan is an amino acid. This same nutrient is high in turkey protein and some say is responsible for the post-Thanksgiving sleepiness. Some have used tryptophan as a mood enhancer, as well, as it is known to help with serotonin mechanisms in the brain. A capsule of 5-HTP can be taken in the morning on an empty stomach.

    GABA
    is one of the brain's neurotransmitters. The full name of this nutrient used to treat depression is gamma-Aminobutyric acid. Its function is to regulate muscle tone and the excitability of nerves.

    So I'll try this for awhile.....xoxoxoxo Jeannette

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

    Hope this helps also!  I remember my Dad used to eat a glass of crackers & milk before he went to bed!  Wink

    The vitamins that will help with sleep are the B vitamins.

    Foods that supply these vitamins are nuts, sunflower seeds, broccoli, asparagus, plums, liver, salt water fish, egg, legumes, milk, meats, avocados, molasses, parsley, carrots, cheese, beef, fresh vegetables, kidney, mushrooms, spinach, bananas, cabbage, cantaloupe, potatoes, catnip, dandelion greens, dates, herring, mackerel, dulse, kelp, and nori.

    To assist with your sleep, in the evening eat turkey, bananas, figs, dates, yogurt, milk, molasses, tuna, and whole grain crackers or nut butter. A grapefruit at bedtime is also good.

  • CatbirdC
    CatbirdC Member Posts: 235
    edited March 2010

    Just a Susie Drive-By to say HI to all my Tamoxifriends,

    Sparrow:        So sorry to hear about your Mom.  That visit will be great for all of you.  Lots of love and caring comes your way from all of us.

    Kelly:             I've thought of you many times as I enjoyed my Cool.  Today isn't one of those days, but I'm no longer complaining about weather.  It's 50 and raining but it's not 0 and snowing and icing.

    Catch you all later. 

    Bonnie

  • Sparrow
    Sparrow Member Posts: 80
    edited March 2010

    Thanks for all the kind words, everybody.  They help more than you know.  :)  

    I've been waking up a lot at night too.  I thought it was just me.  ;)  Lots of good tips here.  I'm going to try some of them.

    Have a good Thursday, team!  :) 

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