Arimidex - Coping with the SE's

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  • doxie
    doxie Member Posts: 1,455
    edited September 2012

    bethu77 - It is very easy to be confused by the Oncotype data.  A negative of ER on the Oncotype chart doesn't necessarily mean that you are ER- unless you had a 0.  If your doctors sent your tissue in for testing, this is unlikely.  An ER in the negative range means that your ER is low or weak enough to negatively affect your Oncotype score, meaning that it will push you to a higher recurrance rate.  I am 5% PR+ and it showed as very low, as a negative, on the Oncotype, but it did register above 0.  Adding to the confusion is that a HER-2 +++ is in the positive range, but, unlike a high rate on the ER or PR, raises your recurrance score.   These three and other data is plugged into a complex formula to get the recurrance rate.  The ER, PR and HER2 data is only some of what goes into figuring the Oncotype score. 

    Hopefully your MO can better explain the content of the report.   

  • 1marmalade1
    1marmalade1 Member Posts: 308
    edited September 2012

    I DID have rads after a mastectomy - 0/5 nodes. 

  • MamaV
    MamaV Member Posts: 907
    edited September 2012

    moonflower - namaste - I like that autocorrect!  Thanks!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2012

    Hot flashes....blah!!!! You may already know all this, but here are some things that helped me: invest in a bunch of fans; big ones for by your bed, tower ones for by a desk, lap ones for watching TV. Also get rid of any turtlenecks and heavy pull over sweaters. Buy sweaters that zip or button in the front, so you can take them off quick and easily. If you can get your wrists cool, it will cool off the rest of your body. Have a cold water bottle or cold pop with you and you can sneakily roll your wrists over it to cool off.

  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited September 2012

    Hot flashes, I used to get at work, I would use antipersperant around my hairline so sweat wouldn't drip down. The things we do.

  • bethu77
    bethu77 Member Posts: 320
    edited September 2012

    I met my new oncologist and love her! I found a note from my old onc that said I was mixed ER/PR. I have always tested as ER+ until the oncotype test. It should ER-. My new oncologist said I was mixed ER+ and ER- and she felt confident about me taking the Arimidex. I just don't want to have another diagnosis of cancer. I am hoping this works. 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2012

    Good. So glad you have found someone who will work WITH you!

  • barbyjean
    barbyjean Member Posts: 108
    edited September 2012

    A good doctor that listens to you is priceless! We all deserve that.

    I agree with F the hot flashes! If only we could convert all that heat to energy, the world crisis would be solved! 

  • barbyjean
    barbyjean Member Posts: 108
    edited September 2012

    A good doctor that listens to you is priceless! We all deserve that.

    I agree with F the hot flashes! If only we could convert all that heat to energy, the world crisis would be solved! 

  • Bexter3
    Bexter3 Member Posts: 61
    edited September 2012

    I am feelin' ya sistas!! Took tamoxifen for one year, off because of severe blood disorder... Now on Arimidex since August... Joints, bones, hot flushes, sweating, blah, blah, blah... Tried Femara, worse AND had migraines. Same with Aromasin. Back on arimidex and day 87 of migraines... Nausea, puking... And new really gross, actually puking in my sleep, aspirate some... On antibiotic for pneumonia caused by that.... I'm only 43 so the benefits of a longer life are great, especially because I have a 9 yr old boy. Onc says I should just quit, but the cancer that invaded me is highly likely to return, so that is not a "real" solution... Using yoga, meditation, hypnosis, essential oil massage on head, aromatherapy, accupuncture, chiro, on and on... But still severe migraine... HELP! Only you know what the SEs are like... What should I do???

  • Bexter3
    Bexter3 Member Posts: 61
    edited September 2012

    I am feelin' ya sistas!! Took tamoxifen for one year, off because of severe blood disorder... Now on Arimidex since August... Joints, bones, hot flushes, sweating, blah, blah, blah... Tried Femara, worse AND had migraines. Same with Aromasin. Back on arimidex and day 87 of migraines... Nausea, puking... And new really gross, actually puking in my sleep, aspirate some... On antibiotic for pneumonia caused by that.... I'm only 43 so the benefits of a longer life are great, especially because I have a 9 yr old boy. Onc says I should just quit, but the cancer that invaded me is highly likely to return, so that is not a "real" solution... Using yoga, meditation, hypnosis, essential oil massage on head, aromatherapy, accupuncture, chiro, on and on... But still severe migraine... HELP! Only you know what the SEs are like... What should I do???

  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2012

    Have you talked to your doctor (and I'd go to my GP, not oncologist) about a prescription migraine medication?

  • Bexter3
    Bexter3 Member Posts: 61
    edited September 2012

    Yes, I am seeing a neurologist and taking gabapentin for them, but no real relief. I have had severe post mastectomy pain syndrome and severe radiation damge so am on a barrage of pain meds alreadys. I always had migraines associated with periods, but after a recent radical hysterectomy, I'm sure my body is hating me with no estrogen... But since my dx was triple positive, estrogen is my enemy anyway. Just got off phone with onc... Same option, stop the AIs, but I really want to see my son grow up... So they said I just have to way quality over quantity... Really at 43? After 2 1/2 years of fighting to win? All the research shows FIVE YEARS of AIs work, not one, not two, but 5. I am so depressed. I started crying but my head feels like it is going to explode so I need to stop. Has anyone else had success fighting back debilitating SEs from these damn drugs?

  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2012

    Do you exercise? Sometimes that helps....

  • Januaryice
    Januaryice Member Posts: 120
    edited September 2012

    One week on Arimidex and so far so good. When did everyone start to feel the SE's?

  • spunkyboobster
    spunkyboobster Member Posts: 738
    edited September 2012

    Mine seem to hit me hardest at the 6 month mark. I'm hoping they'll subside.  Going to the onc today, but not too optimistic that she'll take my se's seriously.  I'm constantly surprised that the onc's who work with this everyday still don't put much credence into our opinions.

  • Tskaiser75
    Tskaiser75 Member Posts: 32
    edited September 2012

    Three months on the "A". I thought my side effects started within the first month but talking with my Oncologist she said the pain was still left over from the chemo - 3 months in and the pain/discomfort is definitely worse. I have been taking the claritin but not much relief. I'm flying to see my mom whom I haven't seen in 3 1/2 year(long story) tomorrow and dreading the 12 hour traveling. I don't move very fast, long or well! On a good note - attended a Cancer Survivor Reception yesterday and made me feel great to know I am not alone in this battle and there is a light at the end of the tunnel. Even with this site and all the other info out there sometimes you still feel like you are on a deserted island. Hope everyone has a Blessed Day! Thanks for all the info and insights. 

  • ananda8
    ananda8 Member Posts: 2,755
    edited September 2012

    Five years ago today, I underwent a partial mastectomy.  Just three more months of Aromasin and I am done. 

    Ladies, you all will get through this.  I won't say time will fly because every day can be a struggle, but time is our friend.  Don't forget to breathe. 

  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited September 2012

    Thanks, notself! I am only on my second month, so I am glad to know it can be done.

  • SusannahW
    SusannahW Member Posts: 470
    edited September 2012

    Tanks notself!

  • SusannahW
    SusannahW Member Posts: 470
    edited September 2012

    Thanks Notself!

  • Concierge5
    Concierge5 Member Posts: 3
    edited September 2012

    Hi this is the first time that Im writting, so far I had only been reading your comments, I have been an arimidex for 1 year and 2 months, boy it seems that the se are getting worse and I wanted to hear more of how your dealing with them. hot flashes, worst are the joint pains all over, I thought I was the only one with the ankle pain, just started and feeling so tired all the time, ect any good input as how to deal with it...

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2012

    I'm only 15 days into arimidex and so far no real side effects, but I have noticed the last couple of days, when I first get out of bed I'm so stiff I just kind of scoot, but just going to the bathroom and going to make coffee seems to get rid of it. I first thought it was the chilly mornings, and I do have degenerative joints, but from reading these posts, I'm thinking it could be A. I just pray it never gets worse than this.

    Do you take Claritin? Not Claritin D.



    Blessings

    Paula

  • ananda8
    ananda8 Member Posts: 2,755
    edited September 2012

    Everyone who has had breast cancer needs to get her Vitamin D3 blood level checked.  If it is under 30 that is part of the reason for muscle and bone pain.  Mine cleared up completely when I got my level up to 50ng/ml.  I take 4000 IU per day of over the counter Vitamin D3.  The prescription stuff did nothing even after a year.  The over the counter stuff worked just fine. 

  • ptdreamers
    ptdreamers Member Posts: 1,080
    edited September 2012

    Does ayone know what meds/supplements are no no's while on the once a week Vitamin  D 50,000 units? My onc who put me on it didn't say anything.

  • ananda8
    ananda8 Member Posts: 2,755
    edited September 2012

    I don't think there are any no no's.  I will be surprised if the prescription Vitamin D does you any good.  I was on it for a year and it was a waste of time.  Over the counter D3 that you can get at any health food store will work much faster in raising your levels.  Talk to you doctor about switching.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2012

    Notself thanks for the advice about vit. D. Is that for just those in treatment? Or for anyone diagnosed? I'm asking because I haven't had surgery or chemo yet. I'm about 17 days on arimidex. My yearly labs showed low D in April even though I take calcium with D. So now, I'm taking D3 1000 iu.



    Blessings

    Paula

  • ananda8
    ananda8 Member Posts: 2,755
    edited September 2012

    I am unaware of conflict with any treatment plan and Vitamin D. I was taking 1000 IU all through my radiation treatment.  I am on Aromasin and am now taking 4000 IU every day to keep my levels around 55ng/ml.  You may want to check with your doctor about Chemo and Vitamin D.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited September 2012

    I've been on a generic Aromasin since around August 11th.  I was also on a mega dose of Vit D (50,000 units once a week), months before starating the Aromasin.  The Vit D Rx ran out a few weeks ago and I hadn't followed up on it.  I was doing fine on the Aromasin until I stopped taking the Vit D, but never made the connection.  Yes, ankle pain!  Insomnia, nightsweats and increased fatigue.  

    I did not have any of these symptoms when I was dx'd with low Vit D (pre-BC dx), so I attribute them to the Aromasin - but also that I'm low on Vit D.  Does this sound correct? 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2012

    Kam170...WOW! Good to know! I will certainly be checking my vit. D levels when I see onc on the 9th.



    Blessings

    Paula

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