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Bottle o Tamoxifen

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Comments

  • Harley44
    Harley44 Member Posts: 2,126
    edited November 2009

    to all the new Tamoxi train riders:

    Welcome!! 

    I've been taking Tamoxifen for over two years now, and it hasn't really been too bad.  Although, I am a very young post menopausal woman who had some problems with a thickened endometrial lining, so I had to have a d & c...  it was the worst surgery I have ever had...  overall, it really hasn't been too bad. 

    I will probably be switching to an AI next month.  I'll be seeing my onc on Dec. 11th.

    Hope everyone has a great week!!

    Hugs

    Harley

  • linn56
    linn56 Member Posts: 11
    edited November 2009

    I know this is from a couple of pages back, but I just read it, and I don't think anyone answered her yet.

    brenda63 : re: 2 periods a month. You can get that as a normal part of going into menopause. I did: sometimes 2 and, less often, sometimes just 1 very heavy period. This lasted at least 2-3 years. Funny, before starting menopause myself, I had this idea that they would gradually taper off, get lighter and lighter, then transition into having no periods. I had no one to ask: as none of my friends had had a natural menopause.

    My doctor said stopping and starting again was more typical, that heavy and more frequent was pretty common.  So this could be your pattern, just earlier due to Tamoxifen. Keep an eye on your hemoglobin: I became severely anemic due to this, and it took almost 2 years to bring it back to normal levels.

    I am 53 now and still getting periods, though irregular.  I have not started Tam yet but will next month. I had an ultrasound and was told my endometrial lining was way too thick, and my gyne had reservations about my taking it. But then, lo, I just had a heavy period: so think it is probably not thick anymore. I may just ask for another ultrasound.

    I am skimming this thread to know what to expect but there is so much I can't read it all. Or rather I don't have the energy right now. I am still wiped from rads: finishing boosts this week.

  • linn56
    linn56 Member Posts: 11
    edited November 2009

    MTG: I would be interested in what you have on Flax seed oil. I have been taking the ground up seeds (rather than the oil) for literally 15-20 years, as it helps my migraines. Up til now I never heard any down side to it, so if there is one, I'd like to know. When I researched it years ago I read to take the seeds rather than the oil because the oil is volatile and spoils too quickly in capsules. My memory is rusty but I thought they were rich in Omega 3s and that was why they were supposed to help, not that they had phytoestrogens.

  • DebbyM
    DebbyM Member Posts: 30
    edited November 2009

    It is so nice to have this thread!  Thank you all for being so supportive and you are all funny too!  And, we can sure use some laughs.  I am going to take the tamox tomorrow I think.  I thought I would start the first day of the month. 

    I know some say they take half in the morning and half at night.  Is there any way that you think might be better to start off with?  My oncologist just said to take it.  And, was everyone else afraid to start it?  Am I just being a big baby?  Frown 

    Why do some of you switch to Al's?

    Have a great Monday everyone!

    Debby

    I am still laughing at that picture Susie!

  • PattiB
    PattiB Member Posts: 107
    edited November 2009

    I have spoken to a nutritionist and 2 TBSP/day of ground flaxseed is ok with her.  Since there is controversy on these boards.  I do 1TBSP every couple days in yogurt. 

  • MTG
    MTG Member Posts: 337
    edited November 2009

    linn56 -

    1. flax vs breast cancer - Many women who are ER+ keep away from all forms of flax because it is a phytoestrogen. The phytoestrogen issue is hotly debated. Many women with BC keep away from all phytoestogens, many eat them in moderation, many just avoid the major culprits. Apparently there is also some thinking that these can inhibit Tamoxifen

    Topic: Avoiding Phytoestrogens, http://community.breastcancer.org/forum/86/topic/742649?page=1#post_1565201  created by our very own bcamnb, who can certainly explain this postion better than I

    Topic: Implictions of Phytoestrogens in Breast Cancer, http://community.breastcancer.org/forum/78/topic/692304?page=1#post_699037 reprinting an article form the American Cancer Society online Journal, also found at: http://caonline.amcancersoc.org/cgi/content/full/57/5/260

    Topic: Phytoestrogen Foods We Should Avoid? http://community.breastcancer.org/forum/67/topic/743716?page=2#post_1617552

    Topic: phytoestrogens http://community.breastcancer.org/forum/79/topic/698488?page=1#post_789816

    For me, the only thing I was truly concerned about was soy because I eat a lot of it  (I know, I know - controversial); my doc said it's almost impossible to overdose on eating any of these things but not to take concentrated forms found in supplements so I'm extrapolating that a flax seed oil supplement which is a concentrated form, may also be bad.

    2.  flax seed vs flax seed oil - EVERYTHING I've read says flax seed is better than flax seed oil.  According to many sources, including the Mayo clinic, flaxseed may have anti cancer effects....but again, this is meaningful only if you're comfortable with the phyoestrogen aspect

    Possible anticancer effects of flax seed (but not of flax seed oil) http://www.mayoclinic.com/health/flaxseed/NS_patient-flaxseed

    Topic: anybody use flax seed? http://community.breastcancer.org/forum/96/topic/743701?page=1#post_1594548

    FLAX SEED LOWERS RISK OF BC http://community.breastcancer.org/forum/86/topic/563976?page=1#post_688997

    For me, if I take any flax seed, it will be in solid form (will have to get a cheap coffee grinder) not oil. Since it's supposed to be so healthy and since I too suffer from migraines on occasion, it's tempting. On the other hand since I eat more than the average amount of soy, I don't want to push my luck re: the cumulative effect of phytoestrogens. So right now, I'm going to get fish oil. (And I'm thinking fish oil should have the same beneficial effects re: migraines since it acts as an anti-inflammatory and blood thinner.)

  • MTG
    MTG Member Posts: 337
    edited November 2009

    By the way, I do eat flax seed bread (actually, Flax  Roll-ups made by Damascus Bakeries; low in calories and quite tasty) so I do not avoid all flax seed.

  • CatbirdC
    CatbirdC Member Posts: 235
    edited November 2009

    Hi All,

    I haven't been "on" as much as I'm miserable with a cold or sinus infection....haven't figured out which it is yet....but whatever it is I wish it would go away.

    Susie~  loved the picture.  I still can paste some and not others.  The ones I can't paste are photographs.  Why I can't figure.

    Debby ~  Welcome and we all take baby steps towards our first bottle of the Big T.  So don't feel bad about that.  I take half a pill in the morning and half in the evening.  But you can do it either way.  I think that helps me with the other meds I have to take.

    Bonnie

  • Alaina
    Alaina Member Posts: 153
    edited November 2009

    Well tomorrow is T-Day!  My first dose of Tamoxifen.  I decided to wait until the first of the month.

    Do you take it at night or in the morning?  With food or without?  There seems to be no real pattern for it, just whatever works for you.

    I will also start a regular exercise program tomorrow, to help stave off any weight gain.

    I just got my H1N1 vaccine this afternoon.  After chemo, I guess my body can handle just about anything.

  • MTG
    MTG Member Posts: 337
    edited November 2009

    A Fish Oil Primer

    As far as I can tell, no down side except fishy taste (apparently preventable by keeping your pills in the freezer). Easier to convert into EPA and DHA in the body than Flax. See lots of links, at the bottom of this posting.

    However, 2 collateral issues re: the specific brands one uses :

    1) Purity -  Because it's derived from fish, there is an issue re: PCBs, Mercury, Lead, Arsenic and Cadmium. The government's regulations are not all that stringent. - So far the most highly refined I can find are (a) Dr. Sears Zone Omega RX (but it has soy, Tocopherols [which is Vitamin E] and is crazy expensive) and (b) Blackmores' concentrated fish oils (available only in Australia, NZ and that part of the world). Carlson's fish oil seems most popular but I can't find any discussion re: it's specific PCB/ etc levels.

    2)   Soy and Vitamin E/Tocopherols - Some brands add these so if you're trying to avoid them, these brands wont work for you

    Also, I've read that a 2 to 1 EPA to DHA ration is prefereable for some reason. So one more thing to keep in mind.

    Fish Oil and Omega-3 by Andrew Weil, MD - not truly academic but a great overview http://www.drweil.com/drw/u/ART03050/Fish-Oil-Omega-3-Dr-Weil.html

    Omega-3 Fatty Acids, Article from the American Cancer Society http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Omega-3_Fatty_Acids.asp

    Q &A re: Omega 3s from Dana Farber Cancer Institute http://www.dana-farber.org/pat/support/nutrition/ask-the-nutritionist.html#number10

    When to Take Fish Oil - a simple article just from ehow,  http://www.ehow.com/about_5098774_fish-oil.html

    Fish Oil Slashes Breast Cancer Risk http://www.stopagingnow.com/news/news_flashes/5597/Fish-Oil-Slashes-Breast-Cancer-Risk

    Topic: omega fish oil and er+??  http://community.breastcancer.org/forum/78/topic/704570?page=1#post_910280

    Topic: Fish Oil Help, Please  http://community.breastcancer.org/forum/79/topic/735806?page=1#post_1396485

    Topic: Fish Oil - article  http://community.breastcancer.org/forum/86/topic/729901?page=1#post_1251092

  • mumito
    mumito Member Posts: 2,007
    edited November 2009

    I think I will keep swallowing those big blooming fish oil capsules.But eat more fish ladies its good for you and not fattening unless you are deepfrying it.I like to steam mine with ginger slivers and chopped green onion.and a little s+p.Serve it over a bed of lightly cooked spinach.One of my favorite meals.

  • MTG
    MTG Member Posts: 337
    edited November 2009

    Or simply grill your favorite fish and serve with a sauce of lowfat lemon yogurt, curry powder to taste (I use a lot) and a pinch of cardamon - all healthy ingredients and tasty too.  The sauce also works with vegetables, salads and rice. (If adding to rice add some diced dried fruit and almonds !)

  • Susie09
    Susie09 Member Posts: 225
    edited November 2009

    Hello beautiful ladies!

    MTG:  Thanks for all of that info!  I love when people post that information with the sites to go to.  I really appreciate it!  And, why do you eat a lot of soy or flax?  I guess I am kind of dumb on that.  I was just told not to eat it, although, it is impossible to not get some in foods.

    Aw Bonnie:  Please feel better!  I hate that you are sick!  I miss you on here!  Is there someone there to take care of you?  You need to be pampered now and to just rest.  Chicken soup?

    Alaina:  Good luck tomorrow!  You will be fine.  Or, I hope so..........haha  Ok, that was a joke!

    Mumayan:  My hubby and I love fish.  Except we love it deep fat fried!  OMG, now I want some. 

    Hey, what is that stuff that Brook Shields advertises to make your lashes grow more?  I want to get some of that stuff.  I wonder if it is a prescription.  Hubby and I are going to the eye doctor this week together. 

    L8r  Susie!

  • DebbyM
    DebbyM Member Posts: 30
    edited November 2009

    Ok, I talked it over with my husband and family and I am starting tamox tomorrow!  So, here I come crazy world!  lol 

    I went thru a lumpectomy, every test imaginable, radiation treatments, so, I think I can manage this little pill. 

    So, IF you get side effects, is it soon that you get them?  What should I expect?

    Debby

  • Alexis2u
    Alexis2u Member Posts: 20
    edited November 2009

    Helllo!  I hope it is ok if I just jump in on this thread.  I have been in a support group for bc survivors and a couple of them suggested this site would be good to join since I just started tamoxifen.  I feel lucky as I have no side effects so far.  So, I am hoping that it will stay that way the 5 years I have on it.

    A little bit about me.  I had a lumpectomy, then 37 radiation treatments, 25 regular ones and 12 boosters.  No chemo as my nodes were clean.  So, I felt lucky in that way.

    I am married.  I have the best husband in the world!  He is my best friend.  This has been so hard on him as well as on me and our family and friends.  It takes a toll on everyone. 

    Well, there you have some of it.  Hope to get to know all of you better and get to know more about this ride on tamoxifen.

    Lex

  • bcamnb
    bcamnb Member Posts: 334
    edited November 2009

    Debby M and Alaina -

    Because I am an intermediate metabolizer, I take 30gm (a 20 mg + 10 mg tablet) of Tamox/day. My onc said not to divide it up. I take it before I go to bed with 1/2 a banana or a few crackers. I have had no nausea (except a VERY mildly upset stomach pre-breakfast on occassion); a few minor night sweats; a few minor hot flashes.

    Re flax oil/pills/seed  and turmeric (curry)-

     I have been told to avoid all of it: too high in phytoestrogens....There are other (safer for us) ways to get Omega 3. I have been given some confirmation from GeneMedRx, an offshoot of Genelex lab where I had my testing done, that the seal oil pills I am taking do not interfere with Tamox (this is a new finding, and is not yet on their drug/food/OTC interaction site!) I don't think in the US you can get seal oil; but I think fish oil would be equivalent. If anyone is interested, I can be more specific as to its composition.

    GOOD FOR the newbies getting on the Tamox wagon. Remember, it is not only warding off the nasty in the boob in question, it is preventing recurrance in the other one by as much as 50%. GO FOR IT!!!  We're all with you on this site. 

  • shelleyr25
    shelleyr25 Member Posts: 19
    edited November 2009

    Hi Lex! Your dx sounds very similar to mine. I am right now in the middle of 34 treatments of radiation following a lumpectomy. My onc started me on tamox right away so I have now been on it since 10/6. Rads started in Nov. Welcome to a great support group!!

  • Susie09
    Susie09 Member Posts: 225
    edited November 2009

    Bonnie, I made this just for YOU!  If anyone else isn't feeling well, they can have some too.  That is, if Bonnie will share!  Sealed

    And, HI Shelley and Lex!  Nice to see you here!  I will be back later!

    Susie

  • hymil
    hymil Member Posts: 177
    edited December 2009

    That looks sooo appetising!

    Yes Susie Im still waiting for surgery My lump was 6cm so they put me on T to make it shrink. Im not convinced its doing any good and Im climbing the curtains the longer i have to wait. So glad this support is here :)

  • MTG
    MTG Member Posts: 337
    edited December 2009

    Welcome, those new to Tamoxifen.  Although T may be scary, the ladies here are not...so feel free to ask any questions, voice concerns or just hang out.

    Susie - In answer to your question, I eat a lot of soy as a lowfat source of protein. Although I am be no means a vegetarian, I'm not particularly fond of meat or poultry (but am trying to eat more chicken) and fish while good has mercury/ pcbs/ etc (esp Tuna and shellfish which I prefer) and eggs have cholesterol soooo that basically leaves soy. I've cut back dramatically but still eat it for lunch or dinner several times a week - medonc, BS and I are comfortable with that. In fact they are more concerned that I like cocktails (Probably not going to change that part either, esp as I'm packing for Art Basel and some time in the South Florida sunshine. Dont cocktails taste so much better on vacation?)

    As for Flax in its various forms - good for heart health, joint pain, blood thinner, headaches, lots of stuff....at least some of flax's benefits can also be gained from fish oil thus my switch.

  • AmyIsStrong
    AmyIsStrong Member Posts: 426
    edited December 2009

    I take my pill at 9pm every night. I was told somewhere that it may help if you have SE's that you will sleep through them. I haven't noticed anything though.

  • MTG
    MTG Member Posts: 337
    edited December 2009

    Oh right, I also take my pill at 9:00 so the hot flashes when/if they occur will be more during the night than day.

    As for when Side Effects occur - reading back on this thread, it seems like the 2 to 3 month time frame is the big turning point although many women have SE's earlier.  For example Susie has had headaches almost from the very beginning and - warning, this may be TMI - I'm having some discharge already and have only been on T for a little more than 2 weeks.

    Susie - the eyelash stuff is called Latisse but careful the small print says it can cause permanent eye problems... a big risk for longer lashes. On the other hand some salons do eyelash extensions (I think they glue or weave it onto you own)  and there's no risk for your eyes.

  • peg119
    peg119 Member Posts: 190
    edited December 2009

    Hey Lex - Our diagnoses sound similar.  No chemo for me, two lumpectomies and radiation for 30 doses (25 regular, 5 boost).  I started tamoxifen the day before I started rads.  Checked out this thread because I was looking for information on Effexor.  Didn't realize that joint pain and cramping were a SE.  Tried the soap under the sheets last night for the foot and toe cramping but not sure if it worked since I was having so much back pain.  I take my tamox in the am but may start trying to take it at night.  Still deciding if I want to start Effexor for the hot flashes.  I am trying to catch up on what I have missed on this thread.  So far I have made it to page 50 but I am skipping a few in between.

  • Harley44
    Harley44 Member Posts: 2,126
    edited December 2009

    DebbyM.

    I am switching to an AI, because...  I am very young to be menopausal, but I was dx'd at age 35 as postmenopausal...    I read that there was some big study which seemed to indicate that for the older gals, it may be better to start on Tamoxifen for 2 years, and then to switch to an AI... It was my onc's plan for me, and it seemed to make sense to me.  I worry about being on any ONE drug for too long, because I read that the bc can figure out a way around things, and eventually the Tamoxifen can fuel the bc...   keep in mind, this is why they recommend that we only take these drugs for FIVE years....their studies showed that after FIVE years, this could happen.   I don't think that there is any danger to any of you women who stay on Tamoxifen for the full FIVE years.... it's just AFTER five years they found this to be the case.

    Good luck to all

    Harley

  • Harley44
    Harley44 Member Posts: 2,126
    edited December 2009

    DebbyM.

    I am switching to an AI, because...  I am very young to be menopausal, but I was dx'd at age 35 as postmenopausal...    I read that there was some big study which seemed to indicate that for the older gals, it may be better to start on Tamoxifen for 2 years, and then to switch to an AI... It was my onc's plan for me, and it seemed to make sense to me.  I worry about being on any ONE drug for too long, because I read that the bc can figure out a way around things, and eventually the Tamoxifen can fuel the bc...   keep in mind, this is why they recommend that we only take these drugs for FIVE years....their studies showed that after FIVE years, this could happen.   I don't think that there is any danger to any of you women who stay on Tamoxifen for the full FIVE years.... it's just AFTER five years they found this to be the case.

    Good luck to all

    Harley

  • Alexis2u
    Alexis2u Member Posts: 20
    edited December 2009

    Well, I didn't get lost so I am back. 

    Peg119, Yes, we are similar in diagnosis, except that I am done with rads!  YEH!  My main complaint about them was I was so tired.  I never really burnt bad except next to my collar bone, and, it wasn't that bad.  I mean my boob hurt towards the end because that is where the boosters were at.  But, they were so fast.  Took like a second to zap me.  You say you had 2 lumpectomy's?  On the same breast?   Good luck with tamox.  I feel we have found a good support group here and I can certainly use one.

    Hi Shelleyr21!  Thanks for the welcome!  It is nice to have some place besides my cancer center to go to talk to other bc survivors that really understand.  They don't focus a lot on tamox in the discussions for some reason.  I have no se's yet that I know of, but, I am sure I will. Or, maybe not. 

    YUMMY to that bowl of soup Susie!   All I need with it is some hard french bread.  Damn, I am hungry now.  haha

    Lex

  • mabbam
    mabbam Member Posts: 8
    edited December 2009

     so i broke down and called-dr was kinda stand offish regarding chest pain, says i need to go see a pulmony guy??? my hubby wants me to do radiation and quit tamoxifin? but even if i do radiation, shouldn't i still do tamoxfin to protect-no body really tells you how to do this,  i guess it's true what they say you have to be your own advocate-but thankful i have you all to chat w/ about this, cuz no one really know's what i'm going thru? am i babbling? look forward to your response

  • Susie09
    Susie09 Member Posts: 225
    edited December 2009

    Hi Mabbam!  I wish I could give you a hug.  You sound like you need one right about now.  Never apologize for calling your doctor.  We have to take control of our lives and our treatment.  It is our life, not theirs.  If you are having chest pain, yes, you should get it checked out.  So, when you do, please let us know what you find out.

    I had radiation treatments about 6 weeks after my lumpectomy.  But, my oncologist and my rads oncologist agreed to not put me on tamox until after I was finished with rads.  That is the way they do it.  I know doctors vary, but, I followed their plan. 

    So, when are you suppose to start rads?  And, how long have you been on tamox?  I haven't been on tamox long, so, I am not an expert.  But, there are a lot of women here that have and that will help you. 

    No, you are not babbling.  You are just confused and scared.  That is why we are here and why we have this thread, to help each other.

    Susie

    Now, LQQK at the picture below and tell me that you are smiling  Laughing

  • MTG
    MTG Member Posts: 337
    edited December 2009

    Staci (same way my niece's name is spelled) -

    Normally chest pain and breathing issues can be a heart thing or a lung thing. I was initially going to tell you to see a cardiologist, however, when I read your back posts I see that you had the same symptoms when you took T before and they went away when your pulmonologist took you off T, right ? So, it certainly sounds as if you have some sort of reaction to Tamoxifen.

    Anyway, why not call the pulmonologist you saw before and ask about his specific findings previously - did he conclude there was a cause/effect relationship. Any clue why ? You may want to go in for a consult (seeing the same guy as before is probably preferable or at least getting copies of your records from that prior go round)  And find out if anything can be done short of going off T ? Also find out if there's any real risk of you dont go off T. You need to find out all different aspects of this thing in order to make an educated decision.

    Also  simultaneously - and this is just my personal opinion but - you make want to see another oncologist for a second opinion and possibly as a replacement since (1) this guy is so standoffish he makes you feel uncomfortable when you've got legit concerns, (2) he should have already anticipated that you might have a reaction to T since you did before and (3) it doesn't seem that he was the sharpest tack to begin with since he didn't even think it was cancer until you got your test results back. I know you said he's the head of the dept (which is normally a good thing) but is there another good hospital that's accessible to you ? Being comfortable with your doctor is a really important thing. Also, if you're going to do this, sooner is better than later because if you are thinking about radiation that window closes the longer you wait after surgery.

    Please keep us posted.

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited December 2009

    I am starting Tamox tomorrow...I am 38 and chemo put me into early menopause, not period since July...I started Effexor in August for hot flashes and WILD mood swings...still having hot flashes, but they are not as bad as before.  I am sooooo nervous about this drug but know it is in my best interest.

    Debby M and Alaina - it is nice to know we are starting this crazy ride together

    Thank you to all who have gone before us and the information and support you have provided