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Bottle o Tamoxifen

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Comments

  • Ainm
    Ainm Member Posts: 362
    edited October 2009
    I just posted this on the motivation board but I hope you will all get a chuckle out of it too!!7 menopausal dwarves
  • bcamnb
    bcamnb Member Posts: 334
    edited October 2009

    I am taking a low dose asprin

  • bcamnb
    bcamnb Member Posts: 334
    edited October 2009

    Like pkb, I also take my Multi-Vite and asprin, glucosamine and calcium in the am and the Tamox at dinner time - evening.

  • bcamnb
    bcamnb Member Posts: 334
    edited October 2009

    Like pkb, I also take my Multi-Vite and asprin, glucosamine and calcium in the am and the Tamox at dinner time - evening.

  • bcamnb
    bcamnb Member Posts: 334
    edited October 2009

    PattyB - check out Genelex in Seattle. That's the lab that did my test - buccal swabs. I live in Canada and there was no problem mailing the swabs and getting the test done there. I now can rest assured the drug is working for me, at least in part. As I am an intermediate metabolizer, it has been recommended I take 1 1/2 - 2 x the dose, and less of my other drugs. The important thing is to find out if you are a POOR metabolizer - that is your liver is not able to turn the tamoxifen into endoxifen, the essential thing we need. Also, if you are POOR, the drug is doing absolutely nothing and it has been suggested that there is a 3.8 fold recurrance. (BTW, POOR metabolizers are 7-10% of Caucasians, IM are 35%, ULTRA (or over metabolizers, who also need more drug) about 5% - leaving about 50% EXTENSIVE (or normal metablizers).

  • bcamnb
    bcamnb Member Posts: 334
    edited October 2009

    check out the CYP2D6 Test and Tamoxifen discussion.

    Hope everyone is having a good weekend. It is trying to snow here ;-(

  • my560sel
    my560sel Member Posts: 399
    edited October 2009

    Thanks all for your input regarding baby aspirin. I'll start taking it tonight. Someone mentioned something about vitamins and Tamox. I haven't heard anything from my ONC that I couldn't take vitamins while on Tamox....but that doesn't mean that I should. Maybe he just assumed I wasn't taking any??? So far I take Vit D3, Calcium, Vit C, Glucosamine, multi-vit, Omega 3, blueberry pills, green tea pills, Tamox and now baby aspirin! Maybe I should ask my ONC if this is OK?.......lol

    Terri

  • my560sel
    my560sel Member Posts: 399
    edited October 2009

    Thanks all for your input regarding baby aspirin. I'll start taking tonight. Someone mentioned something about vitamins and Tamox. I haven't heard anything from my ONC that I couldn't take vitamins while on Tamox....but that doesn't mean that I should. Maybe he just assumed I wasn't taking any??? So far I take Vit D3, Calcium, Vit C, Glucosamine, multi-vit, Omega 3, blueberry pills, green tea pills, Tamox and now baby aspirin! Maybe I should ask my ONC if this is OK?.......lol

    Terri

  • pkb143
    pkb143 Member Posts: 69
    edited October 2009

    thanks, bcamnb, I will do some checking out! All the great info is appreciated very much.

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    Ain- that's hilarious!!!! I think I'll make it my new avatar

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    kmmd- feel confident, I have read a LOT of women's experience on this thread taking ONC approved tamoxi-vacations and having their SE's go away, like Helena.  Your ONC sounds like a really great one.  :)

    gals- I worry about people self- medicating.  I have seen people rushing out to add this and that to their regimen, its just as troublesome as stopping a drug without talking to your ONC.  I definitely do research on my own and get a lot of good ideas here and elsewhere- it was a completely non SFBC friend who told me about an article on Zometa, I took it to my ONC and now my ONC is putting me on it- BUT I wouldn't start popping any over the counter or prescription pills without asking my ONC.  We don't need any MORE problems, right?

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    Oh and I am completely pissed off because its freaking hot and humid AGAIN!!!!!  Hey, its OCTOBER, enough with the humidity and high temps already!

  • bcamnb
    bcamnb Member Posts: 334
    edited October 2009
    I absolutely agree about adding/subtracting meds.  Either your onc or  your cancer-specialist pharmacist should be queried. That said, I did the testing by myself as I had no encouragement/support from the onc. Now that I am "abnormal" he is interested!  That's OK - I feel the more open education we all have the better.
  • pkb143
    pkb143 Member Posts: 69
    edited October 2009

    Excellent point, Rachel. I include all my OTC on the medication list I give my doctors, including supplements/vitamins. You never know how some of this stuff will interact....

    **you won't believe this but it's nice and cool in Oklahoma!! perfect football weather. Or stayin' in- cuddling up with puppy-dog-weather.

  • HelenaJ
    HelenaJ Member Posts: 304
    edited October 2009

    Just checking in ... Ainm that is excellent - I could be all 7, except for sweaty at any one given time!!!!!!!!! LOL

    Rachel - speaking of self-medicating, my DH has just opened his first beer to celebrate the grand final .... it is nearly 1pm and the game starts at 5pm!!!!  Think I may have to make my own tea tomorrow morning!!!!!  Sorry you still have that damn period (what is with that!)and it is so hot, very uncomfortable.

  • LeggyJ
    LeggyJ Member Posts: 195
    edited October 2009

    Well, I'm jealous, that Helena, is an EM and I'm only an IM..sure wish I can go back to having a glass of wine with my dinner. Men, I don't really miss, YET.

    This week the weather has been lovely here, today it really cooled off to about 67degree's.  Quite a change from last Sat. when it was 103.  DANCING WEATHER!!! 

    Hey did I miss something about Tamoxifen and vitamins?  Rachel can I ask you what you take?  I was taking D3, but stopped because I'm outside all the time, and most of the time I forget to take calcium, because I can't take it within 4hrs. of my thyroid med. but Wolfie reminds me to take Omega 3's in the morning (he loves them, and the vet. told me to give him one a day).  Gee, how do they expect  chemo. gals to remember all this shit chemo made us forget everything???

  • PatMom
    PatMom Member Posts: 322
    edited October 2009

    Excellent point, Rachel. I include all my OTC on the medication list I give my doctors, including supplements/vitamins. You never know how some of this stuff will interact....

    If you use one pharmacist for all of your prescriptions, that goes a long way toward stopping any possible interactions. 

    I keep the list of all my medications, vitamins and supplements and the dosages I take on the notes section of the ICE listing on my cell phone.  I can easily update it as soon as I make any changes, and with multiple doctors, I don't always have the need/option to clear the new medication with the onc.   I always have my phone with me when I visit the doctor, so I just let them check the list on the phone against what they have in their records, and they can update every visit.  That information would also be available to ambulance crews and emergerncy room personnel if I had a medical emergency and couldn't tell them myself.  All first responders check your cell phone to see if there is an ICE listing so they know who to call in an emergency.

  • AllieM22
    AllieM22 Member Posts: 188
    edited October 2009

    bcamnb--interesting on the tamox stats. (I think I am an extensive metabolizer...hopefully not ultra).

    I would definitley be proactive about asking your onc about other medications and supplements you are taking or want to take--don't assume they are thinking about this. You need to be bring it up. Ainm--what I've heard dr's say (b/c they generally don't get into discussions on vitamins) is that a general multiple vitamin is fine. I'm surprised that they recommend you stay off all supplements--it's probably a blanket statement so people don't inadvertently take supplements that affect tamox--or that they don't know what the effect is so don't want to chance it.

    I brought up baby aspirin to my onc when discussing tamox and she said it would be fine--and it was to help guard against any blood clot issues although no prior problems with this. I also take glucosamine as tamox can cause joint pain--this is a general supplement that is helpful to probably everyone anyway (as we age or are athletic) and she ok'd that too.

    I did wonder about taking all the vitamins with the tamox but I haven't had issues with the tamox so don't want to switch it to nighttime and the vitamins say to take in the morning and at noon... 

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    uh, what's an ICE listing? Embarassed

    it is interesting about the ONC getting interested after you took the test.  I dunno, I questioned everything my ONC said at the beginning and chased down every lead and read every article and all these threads and each time discovered that my ONC had it right all along.  I guess part of my skepticism came from the good news.  Like, that's all I have to do?

    I was on a thread on BC.org recently- it popped up as a popular thread, something about DCIS being minimized. A lot of women who were Stage 0 or Stage I coming up with mets a dozen years later.  I know that's a minority, and those women would probably tell you they are uncommon,  but still, that's the other 10% that could be any one of us. A lot of them referred to how their ONCs told them that one day they will look back at this as a "bump in the road".  I remember being told that. Of course statistically they are right to tell us this.  Very right.  I went from being someone who couldn't understand why I should take Tamox with all its risks for what I then thought was a "measly" 4% less chance of recurrence than surgery was calculated to provide me.  Once I got the point of what that 4% meant, it was me who pushed for the Zometa, to get another 1-2%.

    Going back to the beginning, as many many mucho many of us on this thread feel, none of us likes to take more medicine.  Too much Tylenol is bad for... was it kidneys or liver?  Just enough Vitamin D3- but not too much.  Even before BC I remember having a problem because I was spooning Vitamin C granules into everything I drank thinking I couldn't get enough Vitamin C.  I can't remember what the reason was for not going on baby aspirin, maybe that since I don't have a circulatory problem and am not at particular risk for one, to save that option for the case that I might need it later?  Is it so that every drug has a maximum dose after which there is no point in increasing it?  Or is that just something I used to think I knew?  

    Maybe I should be asking again about these things: taking baby aspirin, forging ahead with a baseline TVUS, getting the CYP2D6 test but I know I covered this ground with my ONC, and I am actually pleased I can do less.  Maybe I don't have to do all that other stuff, maybe I can just take the Tamoxifen, work out more, eat better, start Zometa not borrow trouble I don't have? 

    Oh and what's in my pillbox for the days of the week is antacid, iron, a vision enhancing vitamin with Vit A C and E from Bausch and Lomb called AREDS, and Tamox.  I already had the box for the antacid for reflux and iron from my last physical, I threw in the AREDs cause I read an article about how they help keep your eyes young, but supposed to take it twice a day and I am stoopid at night.  So I just threw the Tamox in the slots.  ONC said take it in the morning so I do and so far, np.  Hoping it stays that way! 

  • HelenaJ
    HelenaJ Member Posts: 304
    edited October 2009

    Football is just about to start and thought I would check in.

    You will get a recurrence or you won't.  0% or 100%.    I think we are all doing our best under the current crappy circumstances we have.  We have this amazing board to find out the latest and best to offer, whether it be alternative or from the medical world.  I'm a very airy fairy person on these boards because I just don't know what the right thing to do is, just what is right for me.    Running feels good to me, feels like it is making me a healthier person, taking tamoxifen makes me feel I am doing my best to kick this SFBC's butt. 

    I love how we all share and comment on what is available and what we are doing.  I would never have learnt about the variances in the stupid CA125 if it wasn't for Rachel's research, about splitting the dose if it wasn't for Meg, seen how Mary copes after an ooph and just the spirit of Kari, blah blah blah.

    My Onc really only knows what he knows, if that makes sense, he actually enjoys our conversations about what I have learnt, hence being the 14th person in Australia ever to do Oncotype DX and the first in our region to do a CYP2D6.

    Better go, I am being far too serious for a Sunday afternoon, better go and deaden my brain with some Australian Rugby League.   

    go the Eels

    big hugs

    Helena

  • chelev
    chelev Member Posts: 417
    edited October 2009

    Terri, wow, I had a lot of reading to do to get to the end of the post!  I take my baby aspirin in the a.m. with the morning load of supplements and meds:  prilosec (for acid reflux), reservitrol, fish oil, biotin, vit D3, DIM w/curcumin, pro biotic tab.  My onc recommended it for a couple of reasons - she said that the tamox could cause blood clots and the aspirin will help with that, and as I'm 46, it's time to start thinking of heart issue prevention (my father passed away 2 years ago from a double heart attack and he had lots of clogged artery issues) as a daily measure, so I take it for that too.  I take my tamox with the p.m. supplements:  cinammon, anti oxidant multi vitamin (I get this one from the doctor so it's really good - loaded up with all kinds of good stuff!), and a hair/skin/nails supplement that has biotin, magnesium and one other thing.  Most of everything I'm taking was given to me on a list from my onc - she really is into supplements as a way to be healthy, which was one of the reasons I switched to her.

  • ktym
    ktym Member Posts: 673
    edited October 2009

    Rachel, thanks for the encouragement.  Yes, my Onc is really one of the outstanding ones, smart, up on all the latest, common sense, and cares about quality of life, really thinks about it.  If anyone ever needs a referral for an Onc in MI they should give me a PM.

  • PatMom
    PatMom Member Posts: 322
    edited October 2009

    Rachael, an ICE listing is who emergency personnel should notify if something happens to you.  Just label the phone number as ICE.  In my phone, when I put that in, it automatically jumped to the top of my contacts list, and has a little first aid symbol next to it.  Even if your phone doesn't do that, you can always just add it as if it were another contact, and emergency personnel know to look for it in your contacts list. 

  • ajlive
    ajlive Member Posts: 14
    edited October 2009

    Chelev:  What is DIM w/curcumin and pro biotic tab?  What does cinnamon do?  My list of supplements is growing but do feel better taking them.

    Have got Tamoxifen prescription filled but have not started taking it yet.  Decided to wait until after Oct. 13th when ovaries are removed.

  • AllieM22
    AllieM22 Member Posts: 188
    edited October 2009

    Rachel--yes you should set up an ICE since emergency personnel are trained I believe to look for that.

    Also there are some things it's not as detrimental to overload on like Vit C--which is water soluble so it just washes out of your system if not absorbed (thru urine). Others like Vit A I think and I forget which others can really be a problem esp if fat soluble which means it will just keep getting stored in your fat and building up. I just found out that the only way we lose iron is by bleeding so if you overdose on it it's bad esp if you are post meno and not having monthly periods.  Have a good day ladies! I am off to walk the pooch. It's cold here, btw! 53 at the moment--brrrr.......

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    The ICE thing is a good question- apologies for going off topic... Here in NYC basically its about calling 911- period.

    Am i missing something?

    Back on topic, thank you for the depresso-rant about supplements.  I was in a down mood last night when I posted that.  It is so frustrating having to go through hoops to get to my ONC, if I call I have to deal with his psycho PAB- who STILL hasn't told me she changed the appointment, although I figured it out by checking my patient account online... i bet you anything she frikin put it in SNAIL MAIL just to be difficult.  Last email I have from her is from March when she cocked up my PET/CT scan.  My ONC is un-fond of email, but I think it's worth shooting him a quickie about the baby aspirin.  I am 49 (YIKES) with no family history of heart disease (YAY!), overweight but working out an hour a day pretty much.

    And I appreciate that no one virtually smacked me for mouthing off with my relatively good SFBC stats.  I'll push the envelope once more with another backhanded rant... or just an observation that may be annoying to some, but if there's others like me, its worth it to say... When I had lunch with my Stage IVa tonsil cancer friend, he's a dear friend from high school.  He was on the football team, he was always in shape.  He remarked at one point how on his PET/CT scan he was utterly healthy- save for SFC.  He also pointed out how he was at the "top of his game" at DX, having just met and exceeded his career goals, happy family life, there is nothing medically wrong with him- except SFC.  The same is true for me.  Save for reflux problem I gave myself due to stress eating and a little diverticulae (not diverticulitis) I have the most boring health history.  Oh a couple of the Med ONCs I interviewed were just so excited to get me on chemo, because I didn't have any pre-existing conditions to worry about, they figured they could carpet bomb my body with abandon, and seemed pretty bummed out when I Oncotyped out of chemo.  I know I am lucky to have otherwise great health.  That said, its still really damn annoying to have SFBC come out of no where and try to sink my battleship.

    Helena makes some incredible posts during rugby time outs...  she writes:

    "You will get a recurrence or you won't.  0% or 100%. "

    So true. I think the ONCs couldn't get any sleep at night if they didn't tell themselves that 90% is good enough to tell us it's just a bump in the road... there's nothing else to do anyway Foot in mouth

    Helena writes:

    "I just don't know what the right thing to do is, just what is right for me.  "

    again, hit the nail on the head.  When they first start throwing all this SFBC sh*t at us and tell us WE have to make the choices, it's just impossible to choose.  I guess the only way to move on is to take our best shot, what we think is right for ourselves.  You know that old saw about there's 10 people in a life raft with you and it can only hold 9 people, what would you do?  I can never answer it- I kind of James Kirk/Koibashi Maru it trying to think of a rotating system where everyone takes turns treading water.  I can not get out of my head what Heidi was saying about not being ready to leave her children.  

    ooooooooookkkkkkkkkkkkaaaaaaaaaayyyyyy that's enough of my strolling down the lane of my own dark SFBC places.  I'll just drop my ONC a note about the baby aspirin...

    I'll worry about the CYP2D6 test if I am lucky enough to go a couple months with no SEs.

    Very proud of you Helena for being the pioneer in your area.  I am fairly stunned because I thought Australia was at least as current as the US, if not ahead.  I think maybe even the Zometa trials may have been done in Australia- but maybe you are in the Outback type area?

    Allie- I also read that about Vit C passing through our systems so fast, its why I was gulping down 1000s of mgs by the spoonful throughout the day, it was a long time ago, I can't remember if it was part of a back problem or maybe the pre-cursor to my reflux, but I did have to stop it.  Was just an example though.

    Have to add, I just took the kid to his first Jazz class at Lincoln Center and it was SO WONDERFUL!  I mean I am just so happy I get to live my life with this kid and have fun like this.  It was just great.

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    Oh doh, ICE is who to contact if something happens to ME.  Hmmm.  This is always a problem, I never know who to put down on the medical forms - there was a TV show about this once... I'm a single gal pretty much alone in the big city.  I think I usually write down my best friend in PA's number.  

  • HelenaJ
    HelenaJ Member Posts: 304
    edited October 2009

    Morning - and yes, had to get my own tea this morning :)  Stupid football.

    Bit scary seeing me "quoted" so to make things scarier here is an article about me doing the Oncotype dx.  When I received my results I went into overdrive trying to get the test some recognition in the local area (you would have been so proud of me Rachel), emailing the lab who does the test, calling Medicare, health funds, local MPs, local Mayor, SFBC websites, foundations etc.  Anyway the only place to do the test here wrote back to me saying they were being pro-active about marketing/promotion and would I like to be in their promotional material.  And yes, I am in regional Australia so the CYP2D6 test is rare but used (I believe) more frequently in the larger cities and centres.  Anyway here is the link on my article if you are interested... you might recognise the photo. (hope it works!!)

    Lost the football and my friend who came over had to race out (she is a midwife in training) and had to deliver a baby - fantastic to hear all about it when she got back - had to watch the game with the "boys".  Lots of fun.

    https://share.acrobat.com/adc/adc.do?docid=5d980be8-5b51-4b8d-a3f9-9044619ba766

    Finally raining here - beautiful.

    big hugs

    Helena

  • my560sel
    my560sel Member Posts: 399
    edited October 2009

    Chelev, how great that your ONC was the one to prescribe your supplements. I never really had the conversation with my ONC but I gather from his response that "we don't know what causes cancer" and " everything in moderation" that he wouldn't be any great help in recommending supplements! I'm trying to find a holistic ONC in my area and hopefully when I do, they can set me straight on which supplements I should be taking and after some testing, in which doses.

    This is all so confusing! You want to do right and sometimes overkill can make things worse.

    Thanks all for your help,

    Terri

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    Helena QOTD- Hell yes I am proud of you, and you make me laugh, I just adore you.

    So i found this cleaning out my email (or trying to) - I sent this to myself in December 2007, a year before DX when I was of course, doing research about menopause 'cause, you know, that's like how I do things, right?  

    Anyway, here it is:

    Pine bark extract may improve menopause symptoms 

    Pine bark extract may improve menopause symptoms

    Wed Sep 12, 2007 12:26pm EDT

     

     

    NEW YORK (Reuters Health) - Pine-bark extract might offer a hormone-free alternative for women with hot flashes and other symptoms of menopause, a study suggests.

     

    Researchers found that an extract of pine-tree bark -- under the brand-name Pycnogenol -- seemed to ease symptoms of women starting menopause. Fatigue, headache, vaginal dryness and menstrual problems were among the most common symptoms at the study's start.

     

    However, all symptoms tended to improve over six months of Pycnogenol treatment, the study authors, led by Dr. Han-Ming Yang of Ham-Ming Hospital in Taiwan, report. The complete findings will appear in an upcoming issue of the Scandinavian Journal of Obstetrics and Gynecology.

     

    In contrast, women who took placebo capsules generally showed no change, or sometimes worsening symptoms, according to the researchers. Pycnogenol is an extract of the bark of the French maritime pine tree (Pinus pinaster), which contains a high concentration of antioxidant compounds that help prevent cell damage.

     

    Research also suggests that the extract acts as an anti-inflammatory and may improve blood flow by enhancing blood vessel dilation. Yang's team hypothesized that all of these attributes of the extract might ease the common symptoms of menopause.

     

    To investigate, they recruited 155 women between the ages of 45 and 55. Roughly half were randomly assigned to take 100 mg of Pycnogenol, twice a day for six months; the rest took placebo capsules.

     

    The Pycnogenol capsules were supplied by the product manufacturer, Switzerland-based Horphag Research.

     

    The study participants completed questionnaires on their symptoms at the outset, then again three and six months later. Overall, Yang's team found, women in the Pycnogenol group reported improvements in symptoms ranging from hot flashes and sexual dysfunction to fatigue and depression.

     

    In addition, blood tests showed that the women's antioxidant levels climbed, while their cholesterol levels improved slightly.

     

    The findings are "encouraging," according to the researchers, especially given that many women suffering from menopausal symptoms want an alternative to hormone replacement therapy, which is linked with heart risks.

     

    Pycnogenol, they conclude, may offer such an alternative.

     

    SOURCE: Scandinavian Journal of Obstetrics and Gynecology, 2007

    Hum... I found the link to it online: http://www.reuters.com/article/healthNews/idUSCOL25911220070912

    and while looking for it found this about Pine Bark from Memorial Sloan Kettering's site:

    Sloan-Kettering - Pine Bark Extract 

     "Clinical Summary

    Obtained from the bark of the French maritime pine tree, Pinus maritima, pine bark extract consists of proanthocyanidins and is marketed under the tradename Pycnogenol®. In vitro and animal studies find pine bark extract has antioxidant, anti-inflammatory properties (6) and exhibits immunostimulant effect (1). Pine bark extract may have antiviral and antimicrobial activities. It inhibits HIV attachment and replication (15), suppresses encephalomyocarditis virus (EMV) replication (16), and represses Helicobacter pylori growth and adherence to gastric cells (17). Pine bark extract has been studied in humans for various conditions. Preliminary research suggest it reduces menopausal symptoms in peri-menopausal women (8), and improves osteoarthritis symptoms (9) (10). It is also used to treat skin disorders such as hyperpigmentation (11) and erythema (12), endometriosis (13), and systemic lupus erythematosus (14). Pine bark extract can improve endothelial dysfunction (2) and chronic venous insufficiency (5). Chewing gum containing pine bark extract may reduce gingival bleeding and plaque accumulation (19). When used in conjunction with L-arginine, Pycnogenol may improve symptoms of erectile dysfunction (18). Pycnogenol supplementation enhances memory in elderly participants (7). Studied for attention deficit hyperactivity disorder in adults and in children yielded mixed results (3) (4). An animal study finds Pycnogenol exhibits a protective effect against cardiotoxicity caused by doxorubicin without antagonizing its cytotoxic activity (20). However, this has not been confirmed in humans.Adverse effects may include irritability and decreased energy especially when used for ADHD. Pine bark extract may interact with certain chemotherapeutic drugs and immunosuppressants.TOPPurported usesAttention deficit hyperactivity disorderCancer preventionChronic venous insufficiencyErectile dysfunctionHypertensionInflammation" 

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