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Bottle o Tamoxifen

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  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    inspie- here's the original article:

    http://cancerres.aacrjournals.org/cgi/content/abstract/0008-5472.CAN-09-1355v1 

  • bcamnb
    bcamnb Member Posts: 334
    edited October 2009

    Re Black cohosh ... my information is from the Tom Baker Cancer Centre in Calgary, Alberta as well as the Genelex site in Seattle, Wash. Both say NO - not only because we are ER+ but also because we are taking tamoxifen. Genelex is clear about things that will inhibit the metabolization of Tamox. For me, as an intermediate (this is NOT a normal metabolizer. The term for a normal merabolizer is an extensive metabolizer - meaning they can change the tamoxifen to endoxifen with no difficulty.) anyway, as an IM, I need to be EXTREMELY vigilant to NOT take anything that will interfer with its metabolization - as I am missing several parts of the gene that does this right. 

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    inspie - I am sending you PM

  • AllieM22
    AllieM22 Member Posts: 188
    edited October 2009

    Meg--thanks for all the research. really interesting. I think what may happen is that drs are making educated guesses at how something *should* work but until further studies, they don't know for sure as all of this works together in an integrated fashion...sorry, still waking up here on the west coast...not completely coherent yet! :)

    There is something else a friend (who doesn't have SFBC) is taking for mild hot flashes that I meant to research--macca root or something? Sound familiar to anyone? 

  • HelenaJ
    HelenaJ Member Posts: 304
    edited October 2009

    Hi Allie,

    The year before I was diagnosed was a nightmare of mood swings and I must have seen my GP 4 times in that year begging for help and asking if I was peri-menopausal.  I was all over the place, I would get angry with my friends, cry when we were out socially, came close to having an affair, marriage was in a mess and I was so "bored" with the monotony of my life.  I found the macca root powder and took it for about 2 months - it worked really well however over time it decreased its benefits and it increased my appetite  - the worse possible thing for me and my poor body image!!!!  My GP then told me to take St Johns Wart (yeah, I know ..) which eventually gave me a rash and I stopped taking it ... the rash was just below my left breast... where I found my lump.  A month or so later I was diagnosed.

    Soooooo blah blah blah whether I can blame macca root, st johns wart I don't know it just scares me looking back.  Did the crazy hormones and the supplements help feed my cancer or did the cancer cause my crazy hormones???  Was it all just a coincidence.  Ah, sweet mystery of life.

    So scared you enough.  Sorry Allie, I rarely stick my nose in about supplements and drugs but macca root was something I was using just prior to being diagnosed.  Just my story.

    big hugs

    Helena

  • KEW
    KEW Member Posts: 450
    edited October 2009

    Ok, question about flax seed.  I've read the studies by the Doc in Toronto, and even emailed her about the safety of ER+ women using flax, she seems to think it is OK, although all her work is in mice.  My onc is on the fence and said don't over do it.  I would appreciate what other ER+ women have been told.  I was 100% ER+PR+, and had my ovaries out in addition to BLM, and I'm on Tamoxifen.

    Thanks in advance,

    Karen 

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    HEEEELLLLLEEEENNNNNAAAA missed you, that's all. :)

    OK so here's my .02... all these supplements are or can be as powerful or more so than the "drugs" and "medicines".  I mean, if they weren't, why would we even bother, right?  And yes, the drug companies definitely are working the profit motive and are all sorts of bad: not disclosing bad things about their products, discouraging natural solutions, who knows what else... but... bottom line, the drugs have been tested and studied and the natural solutions have not, the drugs our ONCs are familiar with, the natural solutions they are not, the natural solutions vary in many ways, the drugs are standardized.  We don't know WTF causes cancer, recurrences or metastases, we're only working from percentages of results over time, so why NOT try what's been tested and approved before throwing an unknown into the mix?

    Before SFBC, I definitely tried natural solutions for all kinds of issues: Melatonin let me sleep at normal hours for the first time in my life after 35 years of trouble, sucking zinc cured my sore throat, eucalyptus helped my niece with migraines, eating a grapefruit each morning kept me from getting colds -and now there's news that grapefruits are tied to breast cancer..

    Whoa nellie!  Grapefruits?  And eating soy DEFINITELY gave me a boob cyst in the same place as my SFBC 6 months later- although the cyst isn't SUPPOSED to have anything to do with SFBC...

    So now that I have SFBC, and all I have is the frikin stupid percentages of what's been studied to go by to save my frikin LIFE ... if I have a problem, I will try the recommended approved drugs and be grateful and try to make them work. I'll only start adding natural supplements if all else fails and its a serious quality of life issue, and even still hope for guidance from my ONC. 

    I ain't playin. 

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    Hey KEW, what's MIB?

  • HelenaJ
    HelenaJ Member Posts: 304
    edited October 2009

    Amen.

  • HelenaJ
    HelenaJ Member Posts: 304
    edited October 2009

    Sorry, my delete looks really bad ... it is 3.30am here and I need to not type. Yawn.  But amen to your post Rach, I ain't playin either babe.

  • KEW
    KEW Member Posts: 450
    edited October 2009

    Rachel

    It is kind of like the Ki67, but different and I don't really know how.  The Mitotic Index examines cell proliferation.  I had 1 cell at magnification 10, but don't hold me to that, I'm trying to go through all my records to give a better answer, and I will later, but I have an appointment in 1/2 hour. My report just stated LOW, but then I got my hands on something else that gave an actual value.

    Karen 

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    KEW- It doesn't mean you are one of the Men In Black? :D

  • shelleyr25
    shelleyr25 Member Posts: 19
    edited October 2009

    Rachel- my vit D level was checked and was just fine (30) so I wont be supplementing with any more. I did buy some Potassium and Magnesium capsules and will start taking those along with my tonic water and advil I hope to get rid of these freakin' muscle cramps.

    I have not been able to reach my psyc but have started weaning myself off the Zoloft and Wellbutrin and will continue to do so over the next 7-10 days. When she eventually calls me back I will speak to her about the Effexor. For some reason I think I was on it a while back but I cant be sure.

    Thanks for all the tips ladies...this is the place to be for me <3

  • bcamnb
    bcamnb Member Posts: 334
    edited October 2009

    Hello All,

    Shelley - when my husband gets bad muscle cramps, a TUM or two INSTANTLY takes the cramp away. ?Not enough calcium in your body?

    KEW - that same list of mine said no flax. Now there is some thinking flax SEED passes right through your body....

    Ivorymom - An onc doc I really respect said there is some thinking plant phytoestrogens may actually HELP but no proof yet, so she advises to err on the side of caution and therefore, avoid foods high in phytoestrogens. The other complication for me...if you read up on preventing cancer there is a long list of things you should eat BUT, according to my labe site - which I highly respect - there is a conflict when you are taking Tamox. For example, tumeric (mixed with black pepper and olive oil) is supposed to be EXCELLENT in an anti-cancer regime. Yet, when I plug tumeric into the GeneMedRx (the software provided by the company that tested my DNA) it clearly inhibits the Tamoxifen. So - I am avoiding it (and when I know it is in a curry dish at supper, will either choose another dish, if I'm out, or have it and then I will wait several hours before taking my Tamox.

    Rachael - like you, I am NOT playin' around!!!!!  Anything than sniffs of interferring with my Tamox, I am avoiding like the plague. After all, it is not a life sentence - only five years - and I am 6 days into it hahahaha

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    Hang out Fo Sho Shelley :)  Man I don't know anything about HOW you are supposed to transition from Zoloft and Wellbutrin to Effexor, only that the people I read here who did it were just fine on Effexor.  Get that frikin shrink on the phone! One gal LOVES Effexor and says it helps her lose weight.  But the little I know says that you gotta do it the right way... again I know nothing about muscle cramps, except what we just learned about leg cramps (Ivory soap in your bed), and I know nothing about Potassium and Magnesium and how they could relate to Tamox or SFBC or anything.  I mean, I know there's potassium in bananas... and if you did chemo I think there's something about potassium????  Get up in your doc's face babe. :)

  • inspiewriter
    inspiewriter Member Posts: 54
    edited October 2009

    Rachel, saw the link above that one worked. Thanks! Very interesting.

  • inspiewriter
    inspiewriter Member Posts: 54
    edited October 2009

    On the grapefruit thing--I've heard that for years, that if increases effects of many drugs. My husband has to avoid it also.  If you put Tamox. into www.drugdigest.org,  to check drug interactions, grapefruit will come up as something to avoid.

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    eh- I had to stop eating grapefruit in 2004 when I got reflux... no citrus, no tomatoes.no acid... Look, as long as they leave my chocolate alone, I ain't  gonna complain...

  • bcamnb
    bcamnb Member Posts: 334
    edited October 2009

    Thanks for the new site, inspiewriter but I can't seem to get grapefruit to come up at all on that site. How did you do it?

  • PattiB
    PattiB Member Posts: 107
    edited October 2009

    Tried breezing through all these posts. 

    My NP says an occasional grapefruit is ok. KEW - Nutritionist at my cancer center said flax is ok and is good for digestion, since their are differing opinions, I'm going easy on it, but not totally avoiding.

    LindaSueH - When I first started Effexor 37.5mg's I felt sick to my stomach and a bit spacey from it.  I was told to take it during the day and I always eat something 1st.  I was also told your body does need some time to adjust to it.  So all good now.  Still get some hot flasher but they are not as intense and didn't want to increase the mg's because of my original SE's even though some do increase it.

    Have a great weekend all.

  • KEW
    KEW Member Posts: 450
    edited October 2009

    If I were a Man in Black, I would zap us all new healthy bodies, and have us forget about all this stuff!

    Shelley--My D levels have bounced between 30, 60, and back to 35 and my onc thinks it should be between 50-80, and closer to 80.  He has put me on 50,000 iu/once a month, I took the first one today, which is D2, but is absorbed better for some folks than D3.

    Thanks everyone on the flaxseed information.  I appreciate hearing from everyone. 

    Karen 

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    KEW, did you flashy thing me?

    LaughingSurprisedTongue outLaughing 

  • KEW
    KEW Member Posts: 450
    edited October 2009

    Rachel--In my heart I've flashy thinged all of usCool

    Karen 

  • Mary22
    Mary22 Member Posts: 428
    edited October 2009

    Hello to all. I have been reading about all the supplements. I try not to take anything, it still gets my goat that I have to take all these meds for the next five years, but if it will save my life, so be it. Calcium and Vit D were recommended by surgeon who did my ooph, since I was thrown into to menopause and he was concerned about bone loss. Effexor to keep me sane from all the craziness from SFBC. I should double the dose if it will help with weight loss LOL!!!!!! Surprised I haven't really gained or loss any weight, all my clothes still fit the same( or maybe they just stretched with my belly).

    Rachel, how is the daycare application going? You can move here and send your son to my daughter's daycare, they have openings!!!!!

    Another stressful day at work, so I took my DDs out to dinner at Chili's, we had a really nice evening!!! I had been craving a Big Mouth Burger. Of course, I got the big mouth bites and shared with my youngest dd, the only way to eat out is to split the entree w/ the kiddies. It helped kill the craving and I do not feel guilty for indulging! of course I have been stress eating at work, so I have been eating less at home. I agree w/ Rachel, as long as we can still eat chocolate!!!!!!

    I have a four day weekend!!!!!!! A three day weekend because of Columbus Day( actually and ACT 80 Day, a Teacher inservice, but I did all my training hours before school) then I am taking a personal day to go to the VA Hospital w/dh for his fibramilgia(SP?). We can spend the day together w/o kids. But no he has to hurry back to help his brother, I should just go to work!!!!

    Have a great weekend!!!!

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited October 2009

    Mary- yeah I forgot that point, the less I have to take the better! OK the update on the nursery school will make you puke (for those who are already nauseous- warning).  They received the application, now I have to go for a "school tour", set for October 18 I think (need calendar), no photography allowed, I believe with a group of parents we will go through the school like we're in a museum or zoo, then there is a "playgroup" interview where I schlep my kid in and I guess we watch them like lab rats, then I have to write an email with my "impressions" from the playgroup, and then I am interviewed by a parent whose child is already enrolled to see if they think I will fit in (yeah, big problem there, I know) and then I wait until March to see if we got in, or were waitlisted.  And... i think I forgot a step in there somewhere.  Anyone hurl?  And yeah, that's what she said, double the dose of Effexor to like 70(?)mgs and it makes you lose your appetite (nothing makes me lose my appetitie, I can always eat, unfortunately).

    Damn, I could almost come and hang out with you, actually, maybe I can.... hmmm.  Today I am schlepping the playpen to my Dad's in Perkasie, and swapping wheels from summer to winter on the car at my cousin's in Lafayette Hill, and I will look for that missing switch I wanted to install up at Allentown... so if I get it, maybe we can meet up in Allentown soon?  Hey wouldn't it be cool if we could sort out a PA gals get together around the same time as the NoCal girls get together? 

  • kfinnigan
    kfinnigan Member Posts: 490
    edited October 2009

    Just a quick hi!!  I've been very busy at work and after work this week, but have barely struggled to read through this thread each day, and each time I would almost get to the end, work interfered...how rude!! haha  love to you all!

    Rachel, yeah I did hurl, eating my breakfast as I type...its crazy what you NYC gals have to go through!!  Although I hear some kooky stuff from coworkers about their wives and babies...

    Hi Mary, Leggy, Allie, lise-e, Patty part1&2, Ainm and of course you Helena!!  And veryone else!  We are off tosome secret warehouse sale and then Lake Tahoe before the snow and storms come our way Monday!!  See ya all tomorrow!

    Hi and welcome to all the newbies!! 

  • gelati1201
    gelati1201 Member Posts: 2
    edited October 2009

    Rachel,

    What a small world. I live in Warrington but our business is in Perkasie!! What are the chances of knowing anyone else who is familiar with Perkasie. If you ever get to Perkasie from March- Sept. stop by our Rita's Water Ice and get a free treat on me!

  • ktym
    ktym Member Posts: 673
    edited October 2009

    Rachel, agree with Kari on the hurling, but nothing affects my appetite unfortunatly.

    Kari, it seems like you've been busy at work a lot lately.  

  • PattiB
    PattiB Member Posts: 107
    edited October 2009

    Vitamin D update - Level at 29 s/b 30-80.  I was told to take 1000/2xday, that started on 9/21.  Had bloodwork done on 10/2, and level is now 36.  I'm still to continue 2/day until 10/21 then 1xday. 

    Rachel I still say your NY experience still reminds me of that Diane Keaton movie that chemobrain has made me forget the name of, oh now I remember "Baby Boom".  Good luck with the open house!  You are a great writer so I'm sure your email will be fine.

    I'm sure I know where Perkasie is, but just can't place it right now (chemobrain again)

  • jezzy234
    jezzy234 Member Posts: 127
    edited October 2009
    Hello everyone.  Well the good ol hot flashes have been  having their way with me for about 5 or six days.  It took me a bit to get into the routine and take the darn pill without forgetting about it till 11pm when I was finally drifting off to sleep.  I went to a nutritionist because my doc told me to take calcium with vitamin d  -I am down a half of an inch shorter since I began this whole schmeal of a mess - and I can't seem to take a pill without feeling a stomach ache so I take liquid stuff the nutritionist gave me.  Needless to say ,  I have been putting up with the hot flashes, have paid attention to what I eat , say and do to trigger the flashes and for the most part continue on.....don't we all??? So my triggers:red wine ( Frown) riding in the car with dd driving and not enough sleep and then sleeping at night ( yeah, doesn't make sense to me either!)  are key ones and then there are the run of mill no rhyme or reason hot flashes.  Oh yes, I forgot, really long boring meetings at work  where I start to drift off and then realize everyone is looking at me for an answer- THAT really triggers a hot flash!!!! I feel the sweat beading across the PFC hair with no bangs and try to blurt out an answer.  Actually I have gotten a couple of good laughs out of the seredipitous blurts so all is okay on that count..  I started to carry a fan around with me and you know, I don't really care!That being said, I hope all have a great Saturday and Sunday.  Later! 

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