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Arimidex

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Comments

  • oldcat46
    oldcat46 Member Posts: 3
    edited September 2009

    Ladies...



    Here's a question that probably seems strange -- it does to me. I've been taking Arimidex for the last year and a half with the more common se's of bone and joint pain. About a month ago, I noticed I was breathing in a strange smell, something like a burning smell. Sometimes my mouth tastes a little metallic as well. Has anyone had a smell disorder from Arimidex? It's with me all the time now. Thanks for any input!!!



    Mary

  • windshift
    windshift Member Posts: 3
    edited September 2009

     I am a patient at a large medical center with a dedicated breast center. At one of my surgical followups, I also met with the medical oncologist who would be treating me with chemotherapy pending the results of my Oncotype test. At that appt, the oncolgist mentioned that she would also be prescribing Arimidex but would not start until she saw how well I adjusted to Rads.  Thank God, I dodged the Chemo bullit with an Oncotype score = 6. So, I moved right into Rads and am now approaching the half way point.  I am dreading the day that she will catch up with me since I am not really sure how I feel about the treatment. I certainly don't want to see the CA return but I just hate taking any type of medication and fear that the side effects.  Am I being a baby?  Does a lower Oncotype score have any bearing on this type of treatment or only on Chemo? 

  • kt57
    kt57 Member Posts: 75
    edited September 2009
    Windshift;  Chemo, in breast cancer treatment, is used to prevent distant recurrence (metastasis to other areas of the body), Rads decrease local recurrence (the breast tissue).  Arimidex blocks your estrogen production - VERY important in hormone receptor positive bc - which you are. If you develop cells that turn to cancer only if they have estrogen to feed them, then this drug can be real protection for you.  You may or may not have side effects from arimidex - everyone is different.  I have been on it since May -- have a few aches and pains that are well controlled with tylenol.  Five years on this med to give me 20 years of benefit is worth it.   Hope you have few side effects and are worrying for nothing.   
  • Lindissima
    Lindissima Member Posts: 37
    edited September 2009

    Hi windshift,

    I also got to forgo chemo because of my oncotype score (13).  I did this with a bit of trepidation, even after 2 oncologists and my radiation onc said I would get very little to no benefit from chemo. But everyone assumed I would take Arimidex, regardless of my score.Your oncotype score  gives you a recurrence percentage.  That percentage ASSUMES  you will be doing tamoxifen.  So if you're recurrence rate is 10% with a score of 6  (  and I am just guessing here, but it's sometning close to that, ask your onc), taking tamoxifen brings it down to about a 5% risk.  Arimidex or any  of other AI's are supposed to bring it down a bit lower. I have  been taking Arimidex for 4 moinths with very minimal side effects. About 30% of women who take AI's have SE's with this med. some  much worse than others. In my opinion, it's definitely worth a try to see if the side effects are tolerable for you. There is a thread on this board, "Anyone taking Arimidex with little to no SE's" you could check. Many women take fish oil, calcium/magnesium and Vit D3 for help with the SE's. You also need to consult more in depth with your onc as to what your actual risk of recurrence is with and without an aromatese inhibitor.I know how you feel.  i've always resisted taking meds myself.  But as someone on this board (JO) says, better SE's than breast cancer. Good luck to you!

  • patoo
    patoo Member Posts: 5,243
    edited September 2009

    Wind, I think generally a low Onco score (congrats on yours being that low - 6 WOW!) suggests chemo is of no value to prevent recurrence. 

    My Onco was 13 and I also did no chemo, only rads and now Arimidex.  As our friend JO says, it's easier to battle se's than bc.  So you would need to decide which one you fear most, se's or bc recurrance.  A baby - not at all!  You are looking at all your options.

    BTW everyone, I read on another thread that our JO took a fall in her basement and the trip she looked forward to with her DH is off; she is confined to a lounge chair and we are praying she recovers and can be back with us soon.

  • Sukiann
    Sukiann Member Posts: 88
    edited September 2009

    Thanks Patoo for letting us know about JO's fall. 

    To JO - get better soon so you can take that trip with your DH!  (((hugs!)))

  • rreynolds1
    rreynolds1 Member Posts: 62
    edited September 2009

    Hi Ladies,

    I had an Onco score of 18 (low intermediate) and decided against chemo.  I was told chemo would only reduce my risk by 3% (total risk was 15%) and after much thought and discussion with my family I decided against it.  My tumor is highly estrogen receptive so my oncologist felt that Arimidex would be a real asset along with radiation.  It has been 2 weeks and so far no side effects.  It might be too soon but so far so good.  I took the advise of others on this site who suggested increased calcium and chondroiten (sp).  I started on that a month or so before starting the drug.  No pain and sleep like usual for a 59 year old woman.  Finger crossed that I continue with no SE but they would have to be bad for me to take myself off Arimidex.

    Thanks to all of you who pass on your tips.

    Roseann

  • patoo
    patoo Member Posts: 5,243
    edited September 2009

    Posted under 'Soy' on the Healthy Living thread but thought I would ask here too:

    Stopped to buy bread and, as I'm more inclined to do these days, read the labels.  Checked several brands of whole wheat, whole grain and stone ground and they all had soy oil and/or soy lecithin. 

    What bread do you ER/PR + ladies use - or do you just buy a bread machine and make your own?

  • chiquita
    chiquita Member Posts: 18
    edited September 2009

    I post this before but here it is again...I am on Arimidex for about 3 months and I have a lot of hot flashes my skin is full of Little bumps just like Gus bumps from cold (I am not cold).

    If I go out on the sun I feel like a lot of needles are poking my skin and I have to go back in the house were the air is on...can you help me and advise me what can I do????

    Thank you

  • sue-61
    sue-61 Member Posts: 262
    edited September 2009

    RE joint pain with Arimidex. I posted previously that my hip and knee on my left side hurt when I lay on that side. Well, I was at Walmart the other day, stocking up on Ibuprofen and I saw some BLUE GOO. It is generic emu oil. And yes, it is blue. It comes in a small jar. I bought it and I must say that first of all it smells good and most importantly it has taken away my joint pains. I think there is an expensive brand name gel but the name escapes me.

    The ingredients in the little jar are kind of odd. Aloe vera, glucosamine and chondroitin and methyl salicilate (which is in Ben Gay), and other things like MARIGOLDS.  I really don't care what is in it, it seems to be helping. Just wanted to share..........

  • sue-61
    sue-61 Member Posts: 262
    edited September 2009

    Jo, hope you are feeling better after your fall. (no pun intended as I think summer is nearly over.....)

    To the soy folks on this site: thank you.........but......

    You know what? I was treated at Dana Farber in Boston, MA, which considers itself the medical mecca of the WORLD, and no one ever mentioned soy to me. 

    Just a thought; hope everyone is well, Sue 

  • patoo
    patoo Member Posts: 5,243
    edited September 2009

    JO, I promise to take notes.  Hopefully there will be additional information that has not already been shared by tghe knowledgeable ladies here already.

    I actually left the store without bread and will ask about it when the class on nutrition comes up (yes, I will eat bread before that but follow your lead in seeing where the soy is listed)

    Hope it's only a bruise.  We need you here.  But take care of yourself however it turns out.

    Sue, no one ever mentioned soy to your but that doesn't mean it is okay.  Actually my med onc wasn't sure either but most things I've read here on this site says to stay away if you are hormone positive.   Can you specifically ask up at Dana next chance you get?  

  • hmm
    hmm Member Posts: 957
    edited September 2009

    Hi everyone,

    I am seeing my oncologist tomorrow and will ask about her thoughts on soy products and "report back".......... my oncologist is with MD Anderson.

  • cw89134
    cw89134 Member Posts: 62
    edited September 2009

    Re: soy products

    My onc is with the Nevada Cancer Institute.

    http://www.nevadacancerinstitute.org/default.aspx

    Not exactly MD Anderson but...

    Anyway, they have a registered dietician on staff and I've spoken to her about soy. The concern she has is with soy protein, not with all soy products. It seems to be a very controversial topic. I've also checked that subject out in Dr. Susan Love's Breast Book and she feels that soy protein in the low amounts contained in food are OK. She recommends against soy protein supplements and capsules.

    Here is what breastcancer.org (Dr. Marisa Weiss) has to say about soy protein:

    http://www.breastcancer.org/tips/nutrition/ask_expert/2000_07/question_06.jsp

    Who knows who is right (if there is a "right" on this subject)? One of the low carb cereals I've been eating for years has 14g of soy protein. The dietician recommended against eating a lot of it. I'm still undecided (and eating the cereal) based on what others say on the subject. Since I also have diabetes (in addition to breast cancer) and watch my carb intake, this cereal is one of the few cereals I can eat with my blood glucose spiking.

    It's not easy, is it?

  • Sukiann
    Sukiann Member Posts: 88
    edited September 2009

    Patoo,

    I went to the store yesterday in search of a bread without soy.  I really didn't think about it until you posted the other day.  I'm usually up on these things and I can't believe I didn't pick up on how many things have soy in them.  I found one kind of bread - it's actually a roll up but you can at least make a sandwich (even though I shouldn't be eating sandwiches anymore with all the weight I gained from treatment).  Anyway, the bread is Joseph's Lavash Rol Ups Whole Wheat.  I don't know if you have this brand where you live but if you don't check other roll ups, maybe there is one that is soy free.  Maybe with all the soy added to processed food I'll end up losing weight if I avoid them!  One bummer though is that I found out that the fish oil I was taking that seemed to work for joint pain has soy in it.  I couldn't believe it!  I've been taking it for only a week or so so I'm not going to worry about it but I'm on a search for a soy free fish oil now.  I think I'll try Whole Foods.  Anyone have a brand that is soy free?

  • coonie
    coonie Member Posts: 2,582
    edited September 2009

    ((((((((((Jo))))))))))) so sorry to hear about your fall!!! Hope the MRI goes ok and it's just bruised. The boards just wouldn't be the same without you all those weeks:)

    My hands and feet are SERIOUSLY giving me a hard time lately. I'm almost positive it's the Arimidex. The joints and even bones in bottom of feet are sooooo painful. But, it's better than the alternative.

    Hugs to all Arimidexers!!!

  • GrammyNancy
    GrammyNancy Member Posts: 24
    edited September 2009

    Sukiann,

    I take Natrol Omega-3 Fish Oil and it does not have soy...think I found it at CVS.

    Nancy

  • patoo
    patoo Member Posts: 5,243
    edited September 2009

    Thanks everyone.  I will check out the roll-ups and also have to look at the Omega-3 Fish Oil I bought and started taking 2 weeks ago.  No, It's not easy.  But I could stand to do without bread as I bet I would drop some weight.  < sigh >

    Back to work now.  Have a wonderful day everyone.

  • glassist
    glassist Member Posts: 26
    edited September 2009

    Patoo - I was also shocked to find that soy is in practically EVERYTHING.  I did find a good bread source, however.  The "Bran for Life" bread, which is in the freezer section of most grocery stores, has no soy and is very healthy and high fiber.

  • Sukiann
    Sukiann Member Posts: 88
    edited September 2009

    Thanks Grammynancy.  I'll check CVS.  I was at Stop and Shop this morning and looked for the heck of it and all brands (I think they had just 4 different brands) had soy.

    Coonie, I'm with ya on the hand and feet! Can't get my wedding band and engagement rings off.  I may have to have them cut off.

    Also, anyone having trouble breathing?  It's not really like I can't breath it's that I wake up in the night trying to catch my breath.  It's very scary and didn't start happening to me until a couple of weeks ago.  Maybe it's sleep apnea?  That's all I need, another medical condition to add to my list.  Don't know if this could be a se of the arimidex. 

  • hrf
    hrf Member Posts: 706
    edited September 2009

    Teh fish oil I use is Nutra Sea and it does not have soy listed as an ingredient. It is made from small fish like anchovies and sardines. I take a spoonful every day.

  • hmm
    hmm Member Posts: 957
    edited September 2009

    Hi everyone,

    Just got back from my appointment with my oncologist at MD Anderson and she feels that it is okay to have products with minor amounts of soy and said how hard it was to avoid this to begin with as so many things contain it ( as we all have discovered). She did say to avoid the soy products themselves.

    I also asked her if they are still saying 5 years for taking Arimidex as some people have said that their oncs are leaning towards 10 years.......... she said right now they are saying 5 years but did not know what would be recommended when I reach 5 years.

    Said that I would "report back" and that's it.....

    Wishing all a nice day.

    Pat 

      

  • ChrisMc
    ChrisMc Member Posts: 11
    edited September 2009

    Hi everyone,

    I'm new to the discussion board, just surfing around checking out whats up on the web site, haven't been online for a while. What is up with Soy?

    I've been on arimidex for 3 yrs now and sure will be glad when the next 2 are over, Heat flashes, osto in hip & spine, sore joints. Anyone have any help for the hot flashes, they are really a pain.

  • Sukiann
    Sukiann Member Posts: 88
    edited September 2009

    ChrisMc- you're right!  This thread has gone soy crazy!! he, he

    I've heard for the hot flashes that some women go onto Effexor (an antidepressant).  I take Cymbalta for depression and fibromyalgia and it works well so I don't want to switch.  The hot flashes are really bad for me too.  I tried to count how often I get them but I lost track.  I think they average about 1 an hour.  Does anyone know if these will taper off?  I also am on lupron shots so both arimidex and lupron contribute to the hot flashes.  I'm interested to see how I handle them in the winter time when I'm all bundled up.  Right now it's easy to take off a sweatshirt or kick off my flip flops but in the winter it will be harder.

  • ChrisMc
    ChrisMc Member Posts: 11
    edited September 2009

    Have just recently moved so have a new Doc, will ask about the antidepressants, oh ya at least 1 and hour, unless you are cold, seems when you want one it just doesn't happen, go figure.

  • Sukiann
    Sukiann Member Posts: 88
    edited September 2009

    I'm going to have to go off the fish oil.  My SIL just reminded me that I shouldn't be taking it anyway.  I have an ICD (implanted cardio defibrillator) for a deadly arrhythmia (yes, me and my siblings can just "drop dead" so we have icd's to prevent this) and there was a study a couple years ago that concluded that fish oil actually can attribute to arrhythmias in people who have icds.  So..... I guess I don't have to go to CVS to look for the fish oil without soy!  That being said, yesterday my hands were really bad and then they loosened up later in the day.  I took a supplement that my husband bought from GNC.  It is a combination of glucosamine, chondroitin and MSM.  Maybe that is what helped?  I don't know for sure but I'm going to continue to try it to see if it will lessen my pain.  Does anyone else wake up with hands that are numb/asleep?  It is so odd to have it happen to both of them.  Makes it so hard to shut off the d*&% alarm!!

  • GrammyNancy
    GrammyNancy Member Posts: 24
    edited September 2009

    Hey Girls,

    The PA at my onc office told me to try Vitamin E for the hot flashes that they have reports that this helps.  So I've started taking it and yes it might be working...if I can just remember to take it.

  • carolehalston
    carolehalston Member Posts: 8,273
    edited September 2009

    Sukiann, I've been having numbness and tingling in both hands and arms since my BMX 8 wks ago.  Goodness, I hope Arimidex doesn't make it worse.  I got my prescription order yesterday but haven't gotten it filled yet.  I've started wearing a hand/wrist brace at night because of the carpal tunnel symptoms that have developed. 

    I started taking Effexor (75 mg) a few wks ago to alleviate the hot flashes that came back when I stopped HRT.  The med has really helped.  I'm hoping it helps with the Arimidex-induced hot flashes, too.  I've been taking glucosamine/chondroitin for about 12 yrs and have not had any arthritis pain at all, and I'm 66.  But something tells me that's about to change.Tongue out

  • patoo
    patoo Member Posts: 5,243
    edited September 2009

    I started taking glucosamine/chondroitin with and/or without MSM for about 8 years ago for hip problems.  Became totally pain free and was able to stop taking it after about 5 years.  The Arimidex seems to have made it flare up again so I started taking them again about 3 months ago and now have great relief with only occasional pain when I bend the wrong way.  My hot flashes only occur a couple times a day and last just a few minutes.

    My Omega-3 Fish Oil is by Nature Made and has no soy.  Got it at Rite-Aid.

    So, as JO keeps telling us, Arimidex may have se's but fighting bc is much worse.

    Enjoy your evening ladies.

  • Sukiann
    Sukiann Member Posts: 88
    edited September 2009

    I will stay on the arimidex and continue to fight a recurrance!!!  I think I've found the solution in the glucosime, chondroitin and MSM.  I feel better today - just tired from the radiation - only 6 more boosts left!

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