Complementary and integrative approaches

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  • kira1234
    kira1234 Member Posts: 3,091
    edited July 2011

    SusanK8, It makes sense they would be easier to absorb. Now I will have to find them to buy. I've been using something called nature code which I thought were a good vitamin supplement.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Otter, I hope you did copy and paste this info on the other complementary thread at the risk of looking biased. As far as i can see, i,m the only newcomer on this thread and kinda resent being treated like a grade 5 student

  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    Luan, I think Otter meant newcommers to breast cancer, correct me if I am wrong Otter.

    Are any of you on hormone suppressors? My naturapath said something interesting to me but I have not had time to look up the research yet. She said that Aremidex comes in one dose only for starters which makes no sense to me at all. Then she said that there is research that indicates tht a lower does does the job just as well. She recommended 1/4 of a tab twice a week as apposed to one every day. Hmmmm...

  • kira1234
    kira1234 Member Posts: 3,091
    edited July 2011

    Merilee, I am on Femara. I really don't understand the one size fits all either. I think your naturapath is thinking outside the box which I wish more Onc.'s were willing to do.

  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    Well when I ask the Medical assistant at the Onc's office what number we are trying to get to with the suppressors, it was clear to me that she did not know what she was talking about because she said "there is no number. Hello!" My estrogen is at 32 which is very low and I have concerns about the rest of me that needs some, like bones, heart, brain. She said that it only targets breast cells. Wrong again. Scary right?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Merilee, am having severe SEs from Tamox and the onco refuses to give me the lower 10 mg dose :((((

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited July 2011

    Luan .. can you take 10 mg in the morning and 10 mg at night?  I tried taking my Tamoxifen that way.  I had horrible SE's too, but in the end my doc said I could just take the 10 mg a day and it would be okay.

    hugs,

    Bren

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    My onco is not even doing a hormone panel !!!!!!!

  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    I haven't even started yet and my estrogen is at 32, that is why I started questioning.

    Luan- I lost my hearing in my left ear while on Tamoxifen-was on it only 6 weeks. Don't let your Onc blow you off. The day I quit taking it and found another Onc I couldn't hear out of my left ear and everything I looked at had an orange tint. The Onc I had at the time said" Keep taking it, it will get better." Right! I still can't hear out of my left ear and that was 2 years ago. By the way the FDA is collecting info about hearing loss & tamoxifen.

  • mollyann
    mollyann Member Posts: 472
    edited July 2011

    I've always been confused by this. If the goal is to lower estrogen blood levels, why don't all the oncs measure?

    Some of the older women are already at 15 blood level of estradiol without intervention of an AI. What would an AI do for them?

  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    Great question, if anyone knows the answer I would love to know as well

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Binva, i,ll ask the pharmacist, excellent point ! Will just have to work around that onco of mine ! He has got horrible horrible reviews on the net, just my luck :((



    Been off Tamox for four weeks.(returning on it after my breasts MRI end July) and i can still feel its effects exactly at the same time i took in the evening, this kinda of allover pain, realllly weird :((

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited July 2011

    My onc doesn't test but my PCP does if I ask.

  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    And this my dears is why I also see a naturapath. She really seems to get it, and is up on all the latest research.

  • otter
    otter Member Posts: 6,099
    edited July 2011

    Yes, Merilee, by "newcomer" I meant someone who wasn't already participating in this thread or in the "Alternatives" forum -- most likely, someone who had just been diagnosed with BC or was undergoing treatment and was in the information-gathering stage.

    Luan, I'm sorry if you thought I was referring to you when I used the word "newcomer" in the preface to my posts.  And, I'm sorry if that made you feel as if you were being "treated like a grade 5 student."  After 4 months on these Boards and more than a thousand posts, you are hardly a newcomer.  OTOH, I've been reading and posting here for 3-1/2 years, and I seem to learn something new every day.  I try to keep an open mind, always.  :)

    otter

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Merilee, that is very scary, i,ve noticed i,ve become hard of hearing and that what people say or the TV just does not register, maybe the vertigo is somehow connected to this phenomena. I will be reallyy concerned the day i start seeing through an orange filter :((



    Do you have to go back on Tamox.? Did u get this wooshing sound in your ears ?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    2tzus, do you know how my onc measures if Tamox is working, by the SEs ...when i tell him about them, he says "good, it,s working". How archaic is that ??



    Merilee,.so wish I could afford all the alternatives out there, i know i would feel.100% better

  • mollyann
    mollyann Member Posts: 472
    edited July 2011

    2tzus,

    I've heard other women here complain that their cholesterol went up. WebMD had a short article on a study from the San Antonio Breast Cancer Symposium: 

    Newer Breast Cancer Drugs May Carry Higher Risk of Heart Problems Than Tamoxifen: Study

    By Charlene Laino
    WebMD Health News

    Reviewed By Laura J. Martin, MD

    Dec. 9, 2010 (San Antonio) -- Postmenopausal women with early breast cancer who take newer hormone drugs known as aromatase inhibitors are 26% more likely to develop heart disease than those who take the old standby tamoxifen, researchers report.

    "Treatment with aromatase inhibitors is associated with a significant increase in the risk of cardiovascular events, specifically heart attacks, angina, and heart failure , compared with tamoxifen," says Eitan Amir, MD, a senior fellow in oncology and hematology at the Princess Margaret Hospital in Toronto.

    However, the actual risk of any individual woman developing heart problems was relatively small -- about 4% -- in women taking either aromatase inhibitors or tamoxifen, he says.

    In fact, the analysis showed that 132 patients must be treated with an aromatase inhibitor before one cardiovascular problem occurs. "This number needed to harm is relatively high," Amir says.

    But a woman who already has risk factors for heart disease and takes an aromatase inhibitor has a 7% chance of developing heart problems, Amir tells WebMD.

    For the study, Amir polled the results of seven trials of tamoxifen and aromatase inhibitors involving nearly 30,000 postmenopausal women with early breast cancer.

    The study was presented at the San Antonio Breast Cancer Symposium.

    Aromatase Inhibitors vs. Tamoxifen: How they Work

    About two-thirds of breast tumors are fueled by estrogen.

    Tamoxifen, which blocks estrogen from getting into cancer cells, slowing tumor growth, has been used for decades to treat breast cancer.

    In recent years, its use has been largely supplanted by aromatase inhibitors, which actually shut down the body's ability to make estrogen.

    ----------------------end excerpt--------------

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    2tzus, thanks for sharing, makes me feel a whole lot better to know i,m not the only one :)) You need to take charge and ask your family doctor to do the tests that oncs don,t do. I mean my onc never told me i had to get regular gyneco fmonitoring while on Tamox, had to find out on my own (and his wife died of ovarian cancer while i was getting treatment)...

  • mollyann
    mollyann Member Posts: 472
    edited July 2011

    Luan,

    That is a myth that if you have side effects from Tamox or an AI then it is working. A study came out proving that wasn't true.  Somebody posted it on BCO. Yikes, I don't know how I would search for that or in what thread it was in.Surprised

    It doesn't seem fair that the women with the worst side effects wouldn't at least get some payoff for their suffering.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Wow, thanks Molly, maybe that,s why my onco is putting me back on tamox instead of switching me. I,ve got to live with the adryamicin sequella, so between heart problems and going deaf, i guess the latter is better...?

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited July 2011

    Unfortunately, those myths about SEs = therapeutic effects abound. I think sometimes docs tell cancer patients that to make them feel better. 

    Luan, there is another poster on BCO - Chevyboy, who has reported severe hearing problems as a result of Tamoxifen. It's a pity that your onc is so set on the 20mgs. There really is nothing in the science saying that the effects necessitate 20 mgs for everyone. You might want a second onc. opinion on that in addition to one from a PCP. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    2tzus, will have to ask my gyneco to measure my hormones, the system here does not allow one to switch from one specialist to another :((



    I would think also that the progesterone factor is as important, i was positive at 95%, what happens with that i would like to know....

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited July 2011

    My sense is that the test to measure hormone levels is limited in what it can actually show because it is so dependent on the moment in time.  I've had mine taken and my doctor drew very general conclusions from it, that I wasn't in menopause (which I knew) but he said that the specific number is not very helpful because it fluctuates so much.  So maybe thats why they don't routinely use the test?

    Luan some of the side effects from tamoxifen ease after the first few months.  I hope that is the case for me.  When i was on it I had no side effects at all by one year.   

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited July 2011

    Even that is hard to generalize from. My SEs from Tamoxifen actually got worse and worse, especially after the 12 month mark. I think it would have ruined my health permanently had I stayed on it any longer. Sometimes I could barely function on 10 mgs/day. It has already made other conditions harder to treat and it has made my periods a living hell - in fact, I am seeing my second doctor because of that - thanks, Tamoxifen. As for saving my life - I have no idea yet.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    That is what is happening to me, i was relatively doing not so bad, except for the pain, but everything hit me like a timed bomb all at once a few months ago.



    We are being told to get some sunny vit D, is anyone minding the photosensitivity associated with all the meds, don,t think the creams work in this case...

  • macygrace
    macygrace Member Posts: 205
    edited July 2011

    I'm fairly new on here. I can't say I post too much because the things I occasionally read really make me cry.  And I know things are just going to get worse for me as I have read what others are going through. I'm trying to fight this as best I can and always go to the clinical trials, new research topics ...hoping to hang on until a cure is found. I love people and can't believe cancer patients have to go through all this .

    I'm on tamoxifen. I did the Adriamyican, Cytoxen for a few months and it did nothing. The cancer actually spread to more area's. My onc wasn't sure if the cancer was in my bones or not. The reason being is ....I was hit by a train when I was 16 yrs. old. Had two car accidents in one night. I got hit by a motorcycle while I was on a moped...LOL! I've had 2 heart surgeries and have a mechanical heart valve and take blood thinners. I've always been a fighter and kind of feel like this is the one fight I just can't win. And it makes me angry enough to try this:

    I take a product which has fermented wheat germ freeze dried extract. ( Not sure if I'm allowed to say the products name)

    I chop up a clove of garlic at least 6 times a day.

    I eat avacadoes every day and shoot for some broccolli too.

    I drink 8 glasses of green tea and 3 evening glasses of roobios tea.

    Sliced tomatoes and tomato juice .

    When dinner time comes I eat like a normal person. I got kids....Cool

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Merilee - thanks for starting this thread!  I wanted to add a couple of points -

    Many, many people read these threads but don't post so women new to breast cancer learn a LOT from lurking - I know I did, and still do!

    I have been on femara for close to 2 years, minimal side effects that I notice.  However, I do have heart disease in my family (father has had 2 bypass surgeries - one a single at age 35 in 1972 and a quadruple at age 65).  My father is doing well, very active etc. but obviously I want to watch out for heart issues!

    On femara, my cholesterol went up 40 points.  My HDL ratio was 4 which is just a tad high.  I am in good shape, not really overweight, etc. and had a cholesterol reading done 6 months prior to diagnosis (at age 44) so I am sure femara is the culprit.  My GP has a pharmacist who works with her and recommended a supplement called CholestOff by NatureMade.  It sounded hokey, but I have been taking it for 6 months.  It is plant based sterols.  My oncologist had me do a fasting blood test for cholesterol as part of my quarterly appt.  My Cholesterol went down 30 points.  My HDL which was already good, went up 4 points and my tri went down, so my ratio is now 3.5.  I brought my Cholestoff to appt to show my onc, and wouldn't you know it, she takes it too!  She is pretty up on supplements, tests my hormones every quarter as well as my viatmin D and is a huge proponent of taking Vitamin D, believing it to be a significant factor in BC.

    Now, I had a pretty good diet to begin with, and have not changed anything - as a matter of fact, still butter my whole grain (Dave's Killer Bread brand) toast (with organic butter of course).

    As this is naturemade brand, you can buy it at rite aid where it is often buy one, get one half off.  My onc. buys it at Amazon.  I have not checked Costco for anything similar.  Neither of my docs talked about putting me on a rx for cholesterol, but I am so thankful that this worked.  

    Sorry this is so long, but thought it may be helpful for some of you!

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited July 2011

    My cholesterol is borderline and my PCP has me taking red yeast rice which is a natural statin. I will be retested in August and will let you know how I did.

    Macygrace, welcome. I read about the wheat germ extract. Do you notice a difference in how you feel?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Macygrace, Aprilgirl, thank you so very much for sharing !!! Have heard about plant sterols and wheat germ (looks like anything fermented is a bonus). This is exactly the kind of info we need !! Edited to add, they,re adding plant sterols to everything now, it,s the "new thing"



    Macygrace, wow, you had a lot of accidents and must be in awful pain, i,ve had a few myself....:(( I am really really sorry for what you are going through, no one deserves that much bad luck, my prayers are with you, stay strong

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