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Bottle o Tamoxifen

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Comments

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    thought you might need another giggle - I don't see these very often, unlike Susie!

    this is called pushing your luck

    C

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    sorry, picture wouldn't show up

  • MTG
    MTG Member Posts: 337
    edited February 2010
    By the way Susie, that Walmart story had me laughing so hard, I teared up !
  • Susie09
    Susie09 Member Posts: 225
    edited February 2010

    Glad you all got a laugh out of that!  I think that is the funniest one I have ever read.  Hubby thought it was hilarious.  He liked the one with the dude going in the dressing room and asking for the toilet paper.  What can I say...typical man.  lol

    Micheleboots, I was scared of the se's of tamox too and delayed taking it.  I came on this board to try and make my mind up.  After a bit of time, all of the wonderful tamoxibeauties that were still here helped me to take the plunge.  I was like Harley, I figured if I took it and had horrible side effects that I could just as easily stop taking it.  So far, all I have had are headaches, which I get rid of with Excedrin.  So, not that bad.  I have had some leg and foot cramps and tried the bar of soap.  lol  It did kind of work.  I then started eating bananas to give me more potassium and it really has helped me.  Taking tamox is such a personal decision...Only you can decide what to do.  I just know like Harley that I want to do everything possible so that IF the bc would come back, I know that I did EVERYTHING possible to prevent it.  I don't want to have any What If's.

    Bonnie, what a sweetheart to rumble thru your trash and find that for her.  Did you take a bath afterwords?Sealed lol

    MTG, as always..great information for all of us! Thanks!

    I, personally, think the CYP test is important because if you can't metabolize tamox, why take it?

    Nite all!

    Love, Susie

  • Susie09
    Susie09 Member Posts: 225
    edited February 2010

    Aw...poor kitty is so tired!  So cute!

    http://www.positivenewbeginnings.com/i//the-funny-cute-cat-sleeping-posture-3.jpg

  • Sparrow
    Sparrow Member Posts: 80
    edited February 2010

    Awwww!!!!  too cute!  :D  

    BTW Susie, I hope my brother in law NEVER reads that Wal-Mart story.  I don't want him getting any ideas. My poor sister!   ;)

  • linn56
    linn56 Member Posts: 11
    edited February 2010

    MTG, I have saved your list of what to take!

    I expect to start Tamoxifen soon. Waiting for the results of my endometrial biopsy first. I have had terrible migraines all my adult life. Crippling, even. Much worse than the unmedicated labor with my children, if that puts it in perspective. I'm probably the only person ever who looked forward to menopause: because my mother had said that's when hers finally got better. With my own approaching menopause they were finally, finally letting up. Incidence down by about 2/3s in the last year. I have taken ground flax seed daily for 15 years or more, because that seemed to help. Now it looks like I will have to give that up.

    If the headaches get worse there will be no point in living. I almost threw in the towel a couple of times as it was...but held on for my kids. Thanks very much for suggesting something that might help.

    How much CoQ10? I will go out and get it tomorrow, and start that first before the Tamoxifen.

  • MBCR
    MBCR Member Posts: 51
    edited February 2010

    Still waiting for results of my D&C. I have my follow up next week.

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

    Morning Girls!  I'm BACK!  Ha!  I went to the "new" Oncologist yesterday, & SHE thinks I should switch to Femara.....But I have read a jillion posts & the side effects of THAT drug sound like more than I want to take part in!Wink  Geez!  So far, the Tamoxifen has caused me NO side effects, & I have taken them one month!    I have 2 more months to go, before I need a re-fill, so I'm pretty sure I'm going to call her back, & tell her I just want to stay on Tamoxifen!  I googled Tamoxifen vs Femare, & it looks like the long term effects are the SAME!!!!  Then if you look for Femara in the "forum"....those women have a whole "gang" of side effects!  Tamoxifen sounds a lot easier....Maybe because I am 72, my little mind is just a little harder to convince of trying something "new"....

    And same with me....the Oncologist didn't think that "test" was necessary...I mean the cyp2d2 or whatever it was!  Okay, I have something funny...... xoxoxoxoxo Jeannette

  • CatbirdC
    CatbirdC Member Posts: 235
    edited February 2010

    Oh My Goodness....I'm almost falling off my chair here with doggie's picture.  Hilarious !!!!

    And Susie....the kitty looks like WE FEEL with our SE's !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    Hi All,

    For the ones that asked me about the CYP2D test article it's towards the top of this page 226....but I do notice that today it's 15 topics down instead of 9.

    Gotta Run

    Bonnie

  • micheleboots
    micheleboots Member Posts: 885
    edited February 2010

    Suzie, my cat sleeps like that as well...I will try to post a picture..so cute.

  • MTG
    MTG Member Posts: 337
    edited February 2010

    Linn - I take 400 mg of CoQ10, but I would have been fine with 300; it's just that the capsules I found came in 400 mg dosages.

    For those of you avoiding soy, you can find soy free one at: http://www.puritan.com/kosher-certified-560/co-q-10-120-mg-kosher-019983 . If you're looking for really great prices, for this or any other supplement try: http://www.vitacost.com/..  Also, before you buy check out a web site called retailme not for coupon codes , http://www.retailmenot.com/view/vitacost.com. Currently there's one that expires on Feb 4 for 10% off on anything (WE10ANY) and another that doesn't see to expire soon for 5% off on  Twinlab, Dr. Weil, Metabolife, Alvita, and Natures Herbs (WE101ATL). Note: this site is ALWAYS a good please to check before making ANY internet purchase.

    Here are some links to information about CoQ10:

    http://www.drweil.com/drw/u/id/QAA400021   including,

    • - Breast cancer: High doses (300 mg daily) may increase survival in breast cancer patients.
    • - Migraine: A study from Switzerland published in the February 22, 2005, issue of Neurology suggests that CoQ10 can help prevent and treat migraine headaches.

    (But Note, DrWeil.com sells CoQ10 so it shouldn't be the only source to rely on. I like it  for ease of understanding. The other two links are academic ones.)

    http://www.umm.edu/altmed/articles/coenzyme-q10-000295.htm

    http://www.cancer.gov/cancertopics/pdq/cam/coenzymeQ10/Patient/page2

    Also, one final disclaimer - Not all oncologists/doctors are convinced that COQ10 will have positive effects (unlike fish oil and Vitamin D3 which seem to be universally agreed upon as good) However, I haven't found any  studies or even hints that it could be bad....for those doctors who are not convinced, it seems they think it's a placebo. For me, as long as no one says it will do even the tiniest bit of harm and others say it's good, I'm taking it.

    By the way, Linn, when I am having batches of migraines - I keep a pot of really strong, sweetened coffee in the refrigerator and when I have a migraine (or can feel one coming on)  add  milk to taste and drink down a large glass. The caffeine expands the blood vessels and helps as does Ttylenol or Excedrin Migraine.  If you're going thru a really, really rough patch and nothing works, you can get a prescription for a steroid nasal spray. I've used it once when nothing helped and I was turning into a mushroom (sitting in the dark and doing nothing); it helped but it's powerful stuff and should only be taken when absolutely necessary.

  • echosalvaje
    echosalvaje Member Posts: 73
    edited February 2010

    You know the issue of SE's from Tamox is so different for everyone. I was really worried about the headache issue before I started taking T in Nove. I would usually get a couple of nasty migraines each month before my BC diagnosis. I noticed that I have not had a single little twinge of a headache since my 2nd cycle of chemo way back in May. Is that because the headaches were hormone caused and my periods stopped during chemo? or did the chemo destroy some little headache cell living in my body all these years? We just got back from a vacation at one of those all-inclusives down in the Yucatan where I was drinking like a fish and didn't even get hangover headaches! That said, I've been hoping this trend stays with me as the Tamox builds up in my body because "headache free" has been a tremendous blessing.

  • kcl65
    kcl65 Member Posts: 741
    edited February 2010

    Just popping in very quickly!!

    Jeannette~ You're back... YAY!!!!!  That picture had me laugh right out!! Hahahahahahaha!

    Susie ~ That's exactly how I felt at the end of the day yesterday...  LOL!!!

    Bonnie ~ Thanks so much for finding that thread, you are a star!!! :D

    MTG ~ You always have great information! I'm going to give the CoQ10 a try.  I have always been headachey, but in the last week I have had one almost daily.  Probably the T, but anything to counteract it will be great.

    Harley ~ I have become a really light sleeper and my DH just turning over in bed can wake me up, so I understand what you are saying!

    MCBR ~ Keep us posted! 

    Have a wonderful day everyone!

    Kelly :)

  • Susie09
    Susie09 Member Posts: 225
    edited February 2010

    Good afternoon tamoxibeauties!  Cloudy and cold here, but, no snow!  Yeh!  Well, I do kind of miss watching those big old flakes flying around.  I know..I am nuts.  lol

    Sparrow, I am glad you liked the Walmart post.  lol  Soooooooo, your brother in law might get some ideas, huh?  I think those are sooooooooo funny.

    Linn56, as far as I know, flax should be avoided if you are ER and PR positive, or, that is what I have been told and read.  I am so sorry about your headaches.  Mine aren't that bad, so, I know yours must just be devastating.  I hope you find some relief.  My aunt has migraines and if hers get bad, she gets a rectal sedative that knocks her out.  I feel sorry for her when she has to go to that extreme. 

    MBCR, be sure and let us know about your results for your D & C.  Praying and sending you hugs!

    LOL @ Jeanette's doggie pic.  So funny!  Thanks!

    Micheleboots, I would LOVE to see your kitty pic.  Be sure and post it when you find it.

    And, hi Kelly, Bonnie, Harley and everyone else and byeeeeeeeeeeeee!

    Ok, later girls!

    Love, Susie

  • Grakenmom
    Grakenmom Member Posts: 137
    edited February 2010

    MTG, Catbird and KCl65 - thanks so much for all of the links & info on tests & supplements - I appreciate you going thru the trash to find it!! :)

    Erika09 - sorry you're in the middle of a quandary, but as was told to me - we're the "lucky" ones who were dx'd early, and we have more choices for treatment than those who were dx'd at a higher stage or grade. But just knowing that doesn't make it much easier to determine your best course of action, I know.  I feel the same way as Harley - I needed to know that I have done everything I'm capable of to get rid of it and keep it from recurring,and if that means some SE's from Tamox, then so be it. (I believe the uterine cancer risk, strokes, clots are listed as "very rare" in the Tamox literature).  It also appears to me that we have had similar dx's - and as was told to me, the "invasive" component trumps everything else. As my tumors were ER+, there was no way I *wasn't* going to take an estrogen blocker. So, I can only speak from my experience, but I hope it at least helps you make the decision that's best for you.  xo, E

  • Erika09
    Erika09 Member Posts: 87
    edited February 2010

    Harley44, Graenmom, Sparrow -Thank you so much for your input on my tamx indecision! I agree that I' one of the lucky ones to have been dx'd early enough to have choices of treatment! I made a decision to go ahead and take it, and if the SE become unbearable I will decide what to do later.  

    I am happy that my insurance approved the oncotype dx test.

  • linn56
    linn56 Member Posts: 11
    edited February 2010

    Thanks for the info, MTG! I was running errands early this morning and went out and bought it at Sam's Club before I came on here. They had 3 strengths: 100, 200, and 400mg. I was surprised at how much it cost...so bought the cheapest one, the 100mg. Oddly enough the 200's were more than twice the price of the 100's, ditto the 400. Thought that was weird. But no reason why I can't just take 3! Thanks too for the links including the comparison shopping. Though it's still a lot cheaper than taking Imitrex, LOL. I hate it when something is so expensive that you have to weigh your level of pain to decide if it's "worth" the price of the pill. Meanwhile while you are deciding, the pain is ramping up and it may become too late to abort the headache.

    Is CoQ10 one of those supplements that has to build up in your system to really help? Wondering when I should start taking it. I don't even have the Tamoxifen prescription yet.

    In years past I used Vit E and magnesium too. They helped but I slacked off on taking them. Flax seed seemed to help the most so I focused on that. Since I have to give that up now, I will go back to the Vit E and magnesium too. I have fish oil too...bought it, never took it. I have a hard time remembering to take supplements as it is. I have a cabinet full...but unless they are right in front of me, I WILL forget. And I don't like to leave all those bottles out...reminds me of my parents kitchen table, half covered in pill bottles. I have 6 or so out now, like kelp and tyrosine to help recover from radiation,  and it bothers me. Makes me feel "sick" to see them.

    BTW, when I asked my neurologist years ago about the flax seed, he did not take it seriously either. I think I was just ahead of my time. Last night while checking to see if I really do need to give it up, I ran across articles saying that studies have shown it to help in many people. Ran across something else: I am on Neurontin (gabapentin) for nighttime Restless Leg (called PLMD when only at night). Turns out Neurontin also helps migraines!

    I really appreciate the help. I enjoy your posts, and all the help the rest of you offer. What a great resource this forum is, and all of you on it! It's great to have support.

  • Harley44
    Harley44 Member Posts: 2,126
    edited February 2010

    Erika09

    Welcome to the Tamoxi train!   I think that all the phases of bc treatment can be very scary... but it's good to know that if you start to have se's that are unbearable, you can quit, or there may be other options....

    The girls here are all very friendly, and very helpful with any questions you may have...  and hey, I'm still here too...  even though I have hopped off this train, and am on the Femara train for awhile.

    Good luck to you, my friend!

    Hugs

    Harley

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    Evening All,

    Great comments about the benefits/reasons for taking T. I had said much the same thing in the long note I wrote that was lost before I could post it. A few other thoughts: I take it because it is still the gold standard drug; it is kinder to my bones than an AI; it may reduce my recurrence in the OTHER breast by 40%...and luckily to date for me, few serious side effects. As well, I can quit it if I feel I need to.

    NO soy/flax/other phytoestrogen plants for those of us BC ER+s . Just google the product you are wondering about and phytoestrogen - that will help. Other things to consider - avoid medications OTC, herbals....that use the same enzyme to metabolize the T. It inhibits the T, lowers the active agent we need - endoxifen and therefore is less effective.

    BC is TOTALLY individual - too many variables for us to be glumped together. The best you can do is gather all the info you can, talk to your onc and make the most informed decision you can. I agree with the comments that said, 'then you know you have done the best you can do with the info you have,'

    Grand baby is super wonderful BTW. I only have two more weeks of snuggling before we head to our cabin for several months....

    Hope you are all having a good night

    Caroline

  • Susie09
    Susie09 Member Posts: 225
    edited February 2010

    Soooooooooooo, what is everyone doing for Super Bowl Sunday?  We are having some friends out for a big party.  OMG...there will be so much food.  Usually we have snacks and submarine sandwiches and stuff.  But, I decided this year to have a full course meal.  Sooooooooo, I am fixing spaghetii and meatballs, garlic bread, salad and cheesecake for dessert.  But, with the wine and beer flowing, noone may want the dessert.  lol  I love having a houseful of our friends...it is always such a good time.  Hubby is really excited and I am too!  I hope the Saints win.  I think it would be a huge victory for them.  Sooooooo, whatcha all doing?

    Has everyone here had their Vitamin A level checked?  I am supposed to get some blood work done and that isn't on the list.  I don't think I have ever had it checked. 

    Well, nite tamoxibeauties!  Sleep well!

    Love, Susie

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    Susie, 

    Your party sounds like great fun!!! Never heard of Vit A levels' test - just Vit D, which is really important for us beauties ;-)))))

    C

  • peg119
    peg119 Member Posts: 190
    edited February 2010

    susie - Your party will be great.  We are going to a party right down the street from us so will be easy to get home.  I think she is having a bloody mary bar.  I am taking shrimp which will go well in the bloody marys.  I really have mixed feelings about who I want to win.  Love Peyton Manning and the Colts but the Saints deserve a win.  I have never heard of them checking vit A levels.

    I am almost weaned off the effexor and haven't noticed a big increase in the hot flashes so will probably stay off it.  I really don't want another pill I need to take for 5 years.  I plan on starting vit E if flashes get too bad but wanted to wait until the effexor is out of my system.  Still having back problems but unsure if they are related.  I know volleyball makes it worse but don't want to give up the sport I love so will just have to put up with the back pain.  It is only bad at night now.  I am having the doctor call in a prescription for a sleeping pill to see if helps with the sleep.  The samples he gave me helped a little.

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

    Morning Girls!  You gals are soooo much fun!  I've just been watching the "Older Women With Breast Cancer" thread, because one of our own got deathly ill with an over- dose of chemo 4X what she was supposed to get.....Very serious, but she is finally getting help with that!  It's funny how we all "come together" when one of us is in trouble!  (or is it "are" in trouble?) 

    And I ALSO thank you for the info on the Cyp2d2r2 test, or whatever it is!!!!!!  We MUST be mebabolizing it, if it's rattling around in our body, right?  I don't have any side effects I don't think, Except  my hand is starting to hurt, & I get so coooooold sometimes...  I've been on it for just one month, & I REALLY don't want to try something new like Femara, even WITH the free bottles she gave me...am I just being a big baby?   I'll find out more about the side effects if I go back & read previous posts on this thread!  

    Super Bowl?......How fun.....all those snacks!  But I am counting the days until NASCAR!!! Ha!  The Daytona 500 starts the season off, Feb. 14th.....So until THEN, GO SAINTS!  ...Man, the Bronco's sure couldn't get it together AGAIN this year!  Frown   Love you gals!  Jeannette

  • Sparrow
    Sparrow Member Posts: 80
    edited February 2010

    Susie, I was actually afraid that my brother-in-law had WRITTEN the Wal-Mart story, but he's far from retirement age...  :D  Your party sounds so wonderful!  You go, girl!  :)

    Erika, good luck with the Tamox!  I have been taking it since 1/23/10 and I haven't had any SEs yet.  It might be too early to tell but from the reading I've done the majority of women don't have SEs from it. May we both be in that group!  :D

  • stephanie1
    stephanie1 Member Posts: 23
    edited February 2010

    I have a question, I have tried to read through this thread in hopes that I might find some of you talking about this so if I am repeating this topic I apologize.

    So I finished chemo in August of last year and then did radiation until around Thanksgiving. I started to feel really good again, actually normal. Then I started on Tamoxifen around 45 days ago and in the past two weeks I have been hit by terrible fatigue. It seems concerning to me because I felt so good and then BAM. Is Tamox the culprit and my body just needs to adjust?

    I was premenpausal at 35 at time of diagnosis and of course I was put into chemopause and am still there according to my estrogen tests so it isn't like I am going through menopause issues. So I am really praying that it is this drug doing this to me? I go for a tumor marker test on Friday and see my onc next week but I guess I am nervous so I wanted your guys feedback.

    Thanks

  • Grakenmom
    Grakenmom Member Posts: 137
    edited February 2010

    Hi Stephanie - I've had some fatigue with Tamox as well, but I haven't been through chemo or rads (surgery only).  A trusted nurse told me that it was the shock of diagnosis, aftereffects of anesthesia, working through the body as it adjusts to Tamox that's doing it to me.  So, I don't know if this helps you at all - maybe some of the other ladies here would be able to provide more.  xo, E

  • peg119
    peg119 Member Posts: 190
    edited February 2010

    Jeanette - It is funny that you mention the Broncos doing badly.  My daughter moved to Denver this past summer for grad school and was talking about all the noise that goes on in Denver on Sundays.  She then figured out that is what happens when you have a pro football team that wins.  She is used to the Lions who as everyone knows haven't won in a long time.

  • bcamnb
    bcamnb Member Posts: 334
    edited February 2010

    Hi Stephanie,

    Check out

    http://breast-cancer.emedtv.com/tamoxifen/tamoxifen-side-effects.html

    You'll see fatigue listed as a SE, affecting 2 - 19% of people. I was told the T stabilizes at about the 4 month mark, so maybe the fatigue will lessen as time goes on. I know I was greatly fatigued after my rads. Maybe with Christmas and all, your body didn't get the rest it needed???

    Good luck

    RASHES/HIVES - can't remember who had them. The site noted above also lists these as SEs of T that should be attended to as they could well be an allergic reaction - and as someone else said, watch for changes in the supplier of your med. Different 'brands' have different fillers.

    C

  • MTG
    MTG Member Posts: 337
    edited February 2010

    Stephanie - Caroline is right, fatigue is a definite SE of Tamoxifen. I find that some daily exercise (even simply, fast walking) helps alot. 

    If you're curoius, here's the complete list of SE  that Breast Cancer.org provides:

    http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp

    Side effects of tamoxifen

    Tamoxifen's selective estrogen activation effects can cause some serious side effects, including blood clots, stroke, and endometrial cancer. If you and your doctor are considering tamoxifen as part of your treatment plan, tell your doctor if you smoke or have a history of blood clots or heart attack. If you're taking tamoxifen, call your doctor immediately if you have any of these symptoms:

    The most common side effects of tamoxifen are:

    Here's an odd question for the rest of you - Has anyone noticed that their night sweats are triggered by specific foods ? I've been keeping notes and  twice in row now, more than a month apart, I've had bad nightsweats after eating at one of my favorite middle eastern reataurants. Sounds wierd huh ? I'm thinking it's eating alot of bread which I don't usually indulge in. Is anyone else charting food and strong/atypical SEs ?

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