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Arimidex

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Comments

  • mgm42
    mgm42 Member Posts: 18
    edited October 2009

    Roxanne, my girlfriend was in that Zometa trial.  You are right on - Zometa helps with bones and offers some protection against recurrence.  I wasn't aware that the trial was completed.  I'll check with my friend, as she stays on top of all of these things.  Thanks for the heads up. 

  • pj12
    pj12 Member Posts: 18,108
    edited November 2009

    I came across this entry on another thread and thought it very informative on the subject of knowing if you AI (Arimidex in our case)  was working or not.

    Pam 

    Oct 26, 2009 10:32 pmTenderIsOurMight wrote:Having taken both Tamoxifen and AI's now for eight years, I know of no test which shows it's doing it's job.I do know of some tests to suggest it's not doing it's job: tumor markers which double, bone scans which turn positive, PET scans which light up. The latter are done only when there are problematic symptoms for most of us, although I do see a subjective increase of women who undergo PET scanning for staging initially. You can read BC.org's ASCO statement on tumor markers on the home page: they are still not endorsed, but many of us have oncologists who believe in them. No one knows the needed range of our blood estradiol while on AI's. How low to go vs how high not to exceed is currently anyone's guess, but most think being on the low side is somewhat better (MA-17 clinical trial and distant recurrences, Paul Goss MD). Nevertheless no one get's these values on a regular basis since the experts don't know what to do with them. There are fancy urinary bone tests which can be done to see if your bisphosphonate is likely working. They are still mainly done in research setting I believe.  Like the others have said, it seems the absence of further disease is what presumes the AI is still working.In the future, there may be some tests. Perhaps CTC's: circulating tumor cells, and DTC's: disseminated tumor cells may somehow help. These tests are run prior and during new chemo for mets. I don't know if the algorithm is refined and works though. There's work being done on the mucin receptor on the outside of breast cancer cells, as seen through blood work, with hopes that a vaccine may possibly work against any viable cells. There's a whole lot more, but I can't seem to remember a lot of it tonight.I keep taking my AI at 2:30 p.m. every afternoon. And yes, mawhinney, each day I ask, is it working? Only time will tell.Best to you,Tender
  • sobx
    sobx Member Posts: 108
    edited November 2009

    All I know is that I will take it and continue with SE's. Beats Cancer again. Ibuporfen helps with the stiffness and I walk and take yoga to help limber up.

  • katsOK
    katsOK Member Posts: 23
    edited November 2009

    Question on Arimidex.  Does it stop all aromotase in the body from producing estrogen, even the estrogen produced in the fat in our bodies?  I am overweight so am wondering how much estrogen reduction I will get from the Arimidex if it does not prevent the fat from producing    estrogen.  

  • mgm42
    mgm42 Member Posts: 18
    edited November 2009

    It was my understanding that aromatase does not produce estrogen, but rather disables cells from absorbing estrogen produced by the body.  I think that may be "why" many of us are worried about what happens when we stop taking this inhibitors.  At least this is what I was led to believe. 

  • pj12
    pj12 Member Posts: 18,108
    edited November 2009

    http://www.arimidex.com/arimidex-about/how-arimidex-works.aspx

    The above is a link to a video that explains how Arimidex works.  In a nutshell:  After menopause the ovaries are not producing estrogen.  But small amounts are being made in the liver, adrenal glands and fat cells.  This estrogen is a combination of androgen and aromatase that bind together to become estrogen.  An AI, Arimidex, bonds to the aromatase cell and prevents it from linking to the androgen cell and keeps it from turning in to estrogen.  So the drug does not stop estrogen from feeding the cancer cell... it stops the process that makes estrogen in our postmenopausal bodies.  While the video initially mentions estrogen and fat cells, when it gets into talking about how the drug stops the process it only, at that point, talks about liver and adrenal glands... maybe I missed something.  I'm not clear about E from fat cells.

    Carole:  In this video Astra Zeneca does say the drug can raise your cholesterol!!!

    I'm sorry I do not know how to hyperlink here.  you have to copy and paste the URL.

    Pam 

  • mgm42
    mgm42 Member Posts: 18
    edited November 2009

    Thanks so much.  That was very informative and I appreciate it.  Hope all is well with you.  This is my second week back on Arimidex and although the SE's are back, I want to thank all of you on this page.  Because you share so openly about how you feel, the aches, the pains, the miseries and yet you perservere, you give me your collective strength to stay on this stuff as long as I can manage.  Thanks again.

  • ChrisC433
    ChrisC433 Member Posts: 70
    edited November 2009

    mgm42:  It is certainly not the easiest of drugs to handle. My hands are so stiff and sore.  My ring fingers keep locking up and hurt when I release them.

    You are right though.  The alternative is much worse.  I will live with my aches and pains if it means i don't have to deal with surgery, chemo, and rads again!  I guess we are all just looking for the best way to deal with the SE's as they occur.

    Hugs to all...

  • enjoylife
    enjoylife Member Posts: 187
    edited November 2009

    I take Arimidex at night and don't have problems with sleep normally but my sister takes hers in the morning and she is also doing fine I think whatever works for you. Since chemo I also am on a calcium supplement once a month from having Osteriopenia sorry if I misspelled but there are so many meds and long names at 58 (in a week ha) I have all my meds typed up so when  go for any test or dermatologist etc I have my list with me

  • sobx
    sobx Member Posts: 108
    edited November 2009

    Was walking through Walgreens the other day and saw a neti pot. I think a few back you all were talking of them. Just thought i would throw that in. At least you know I have been reading the post. I'm just a little slow down here in the south.

  • rreynolds1
    rreynolds1 Member Posts: 62
    edited November 2009

    Is anyone experiencing huge mood swings?  I wake up in a great mood then later in the day I become a real crab.  Little thing will set me off.  I can't seem to stop myself.  It's like permanent PMS!

    Roseann

  • pj12
    pj12 Member Posts: 18,108
    edited November 2009

    Hi Roseann,

    I am not experiencing mood swings but it is the one side effect my med onc always asks me about.  Either she thinks I am unstable or it is a common SE of Arimidex... the latter I am sure.  

    Even though I have been thinking how good I am doing my DD just said I move like I am 100 :(  Not what I wanted to hear.

    Pam 

  • hrf
    hrf Member Posts: 706
    edited November 2009

    My hands are a little stiff but it's manageable. My mood is miserable but I don't know if it's the Arimidex or other factors. I think I was miserable before the Arimidex. But my hair is not growing back and that is pretty bad along with not being able to lose weight.

  • carolehalston
    carolehalston Member Posts: 8,079
    edited November 2009

    I have no problem with mood swings but I'm taking Effexor, 75 mg, daily.  The med undoubtedly helps mellow out my moods and also helps with the hot flashes.  Yesterday I wasn't bothered with what I called my "heat waves"!  I warn my dh, "I feel a heat wave coming on."  He'll be sitting in the living room, perfectly comfortable, and I jump up and turn the ceiling fan on high!  Poor fellow doesn't complain. 

    I keep watching for trigger finger after reading that Arimidex can cause it.  Last night both little fingers hurt.  I took a couple of Tylenol for arthritis.  Playing golf 2 days in a row might have something to do with the fingers hurting. 

    All in all, I'm doing well on Arimidex so far.  Fingers crossed.

  • mgm42
    mgm42 Member Posts: 18
    edited November 2009
    Carole - I'm so glad you are doing well on the Arimidex.  That's GREAT!  By the way, I have a nice set of Calloway clones that I'm looking forward to using after I have my trigger finger surgery sometime next year.  Yeah! 
  • katsOK
    katsOK Member Posts: 23
    edited November 2009

    I took my second dose of Arimidex last night, how soon will it be before I have hot flashes?  My hands have been "asleep" both mornings and that is the only thing I see that is different.  They wake up with me shaking my hands for a few seconds.  

  • JackieFolk
    JackieFolk Member Posts: 1
    edited November 2009

    I started taking Arimadex in March of 2009 after finishing chemo and radiation. I didnt notice any thing at first. Now Im to the point I cant walk without a cane or walker, I cant grocery shop etc... M knees hurt like no other pain I have ever had. Yet Im afraid to not take it. I keep telling myself its this or would I rather have my cancer back. I dont know the answer.

  • pj12
    pj12 Member Posts: 18,108
    edited November 2009

    CaroleH,

    My pinkie finger, left hand, has been very sore lately with no explanation.  Gets better as the day progresses but flares up again next AM.  How weird.  I can't blame it on golf though.  If you find a cure, let me know.

    Pam 

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

    Kat43, se's are different for everyone and may start right away, a month later or even 2 years later.  There's no telling.  It does seem that everyone did get the hot flashes.  I've been on since March and I think mine started around May/June.  However, they are pretty mild and only last a few minutes for me; usually no more than 2-3 times a day.

    JackieFolk, you started Arimides the same time as I did altho I didn't do chemo.  Are you taking (or can you take) any supplements for the joint pain?  Or mention it to your med onc?  I know it doesn't work for everyone but the glucosamine has worked quite well for me for the hip pain which came back after years of being gone.  Only had issues with one knee recently and could walk fine but was unable to go up or down stairs.  Ortho doc gave me a cortisone shot 3 weeks ago and now I'm pain free - almost ready to run a marathon (yeah, right!)

    But, as JO-5 always tells us, se's of Arimidex are easier to manage than se's of BC.

  • carolehalston
    carolehalston Member Posts: 8,079
    edited November 2009

    JackieFolk, sorry you're experiencing such horrible SEs.  Have you tried taking glucosamine/chondroitin and fish oil caps?  I've also been drinking 4 oz of pure cherry juice daily for about 3 wks after I read that it contains an ingredient that's in anti-inflammatory meds.  I try to exercise regularly.  I've only been on Arimidex 7 wks, so my SEs will possibly become more severe with time and estrogen deprivation.

    I would definitely recommend Effexor for the hot flashes and mood swings.

    Good luck to all of us who take the dreaded little white pill.

  • samedaynurseJan
    samedaynurseJan Member Posts: 162
    edited November 2009

    I dont do much posting on the boards anymore, I am actively involved in taking care of our breast cancer sisters at work, but I do continue to read the Arimidex board when I can. On a positive note.....I have been taking Arimidex for 10 months now....I take it every morning at 7:30am , I take 2000U of Vit D3, Calcium Carbonate, and 500mg of Magnesium daily....it is my belief that these supplements esp the Magnesium are making my Arimidex journey very easy so far. I also walk close to 2 miles every day rain or shine....I have 1-2 huge but brief hot flashes every day and beyond that I cant mention a single problem I have, a little creakiness here and there but activity helps that. Both my BS and Rad Onc tell me that the bigger percentage of their patients do not have disabling symptoms with Arimidex. I just wanted to say something positive and wish you all the very best of luck on our journey to good health !!!! 

    jan

  • carolehalston
    carolehalston Member Posts: 8,079
    edited November 2009

    Thanks, Jan!  Your post is very encouraging.  I'll have to look into taking Magnesium.  Is there any danger in taking too much D3?  I was tested recently and my D level was normal.

  • samedaynurseJan
    samedaynurseJan Member Posts: 162
    edited November 2009

    You are most welcome Carole :)

    I was moderately deficient in Vitamin D......I take 2000u daily, it needs to be in a gel cap form and it needs to be D3....people who are highly deficient get a prescription for an even larger dose...1000u gel tabs are also available and might be fine for you if you are well within normal range, read up a little bit on the magnesium, it helps to stop the joint and bone pains when used with your D and calcium, I get my extra calcium in Total cereal , organic skim milk and then the calcium carbonate....it sounds like you stay active and spend good time in the sunshine , way to go !

  • katsOK
    katsOK Member Posts: 23
    edited November 2009

    Hi, I have been having some nausea since starting the Arimidex, not to the point of throwing up but just uncomfortable.  Is this a side effect of the Arimidex?   Does it go away if it is?  My vit D3 is not in gel form but I got it at a really personalized pharmany that specializes in vitamins etc.  Should I go buy some more?  Thanks for any response.   Kathleen

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

    I keep forgetting the cherry juice.  Will try to remember when I go to the mall this evening.  My ortho doc had me on an anti-inflammatory 2x/day for my knee and hip (both are much better) but I would much rather do the juice if I can find it.

    Sameday:  thanks; very informative.  My fish oil is in gel form but the others are a pill and I can't remember which one is combined with the D3 - Ithink it may be the calcium.  Have to look when I get home.  I may need to take it separately anyway because I think the dosage is very low when combined with the other.  Only asked my med onc this week to test for D levels so have no idea where mine may fall.  My glucosamine/chondroitin has magnesium as does my multi-vit.

    Kat43:  I've had maybe 3 very minor episodes of nausea since March when I started.  Nausea is one of the se's and from many of  these posts many of the se's may go away after a period of time (but we all have different experiences).  Here's a website with some information:  http://breast-cancer.emedtv.com/arimidex/arimidex-side-effects.html

  • carolehalston
    carolehalston Member Posts: 8,079
    edited November 2009

    SEs from Arimidex are totally unpredictable.  When I played golf and walked the course on Tues., my right hip joint started to hurt.  I played and walked again today and was on the lookout for the same thing to happen again.  It didn't!  However, play was slow today and I ambled along.  Didn't walk at a brisk pace like I did on Tues.  Maybe that made a difference.

    Personally, I have not experienced any nausea. 

    Stopped by the pharmacy today and picked up another bottle of little white pills!  This is the 3rd bottle.  So far, so good.

  • mgm42
    mgm42 Member Posts: 18
    edited November 2009

    SLEEP - I have found through personal experience that when I've had a good night's sleep (6 -7 uninterupted hours), the joint pain and muscle aches from Arimidex are much easier to handle.  I resisted using sleeping pills, although I suffered with insomnia.  But my surgeon's PA wrote me prescription for a mild sedative and encouraged me to use it in order to get some get good sleep.  She said it was important for bc patients to good sleep - not only while going through treatment, but afterwards too,  Then I was doing some research on fibromyalgia and learned that once again, SLEEP could reduce the discomfort of fibromyalgia pain.  I had tried benedyrl and Tylenol PM etc. but they didn't help me.  So, I decided to fill the prescription and try it.  Well, it worked and I'm feeling better than I have in many months.  I don't take the stuff every night, but when I'm having trouble, I use it.  I thought this information might help someone.

    P. S. On 11/9/09, I will have my two year mammogram and meet with my surgeon for my breast exam.  Please keep your fingers crossed for me. 

  • samedaynurseJan
    samedaynurseJan Member Posts: 162
    edited November 2009

    When I was diagnosed nearly one year ago, I had no clue in the world about Vit D levels and how important they are to our health, my level turned out to be deficient which I have also learned is common in the Midwest states and it has taken me this entire year to get it to a really good normal level, during that time I learned about the much improved absorption and value of the D3 in Gel cap form....I dont know if Costco is a nation wide store but I get mine there....200 caps per bottle 2000u each and the price is right.

    If you go to the Mayo Web Site and read about the side effects of Arimidex you will see that there are 50+ assorted side effects that someone has had or will have, almost every ache and pain we have or bout of nausea or bad nights sleep etc can be attributed to Arimidex or to the facts of life for a post menopausal woman. I know some women do suffer bad side effects and honestly I dont take that lightly but truly there are many more of us who find this *insurance plan* to be very doable.

    If you dont want to take a script for sleep but you need some help I do really well with a 3mg melatonin which I buy at Target......

    Fingers crossed for Marilyns 2 year mammogram.....my one year mammogram is 12/09/09 and another milestone bites the dust ! Happy week end to all of you.....

    jan

  • sobx
    sobx Member Posts: 108
    edited November 2009

    Best of luck to Marilyn and Jan. I had my first milestone in August and everything was fine. I take 3 ibuporfen before bed and 3 in the morning to help with the aches and pains. Everyone have great weekend. Me - I'm working as usual.

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

    Best to you Marilynn on your 2-year mammo and check.  My med onc gave me script to have mine since last was in Oct 08 when I was dx.  But I thought my BS said to have it when I saw her one year out post rads which would be May 2010.  I also thought you were supposed to wait a period of time (6-7 months?) after rads to give the tata time to heal.  Mine doesn't hurt but if I press it, it is a little tender so the thought of a mammo (read 'vise') right now is not on my "quick to-do" list.