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Life on aromasin

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Comments

  • MaryNY
    MaryNY Member Posts: 486
    edited May 2012

    Mybee:

    The Oncotype DX test is yet another tool in the oncologist's arsenal to help predict recurrence risk. Some rely on it to help them make a decision on whether chemotherapy would be useful or not. A low score suggests little or no benefit from chemotherapy while a high score suggests a lot of benefit. It's done using on a small amount of the tissue removed during the original surgery (lumpectomy, mastectomy, or core biopsy) . After the surgical procedure, the tissue sample is fixed in formalin and embedded in paraffin so it can be preserved for further diagnostic testing, including the Oncotype DX test.

    I don't think the Oncotype test is usually done for Her2+ tumors. From elsewhere on the forums, I read that if you're Her2+ the score is heavily weighted, adding about 12 points onto the score and almost invariably puts you into the intermediate range, or higher, where chemo would be advised anyway. Also since triple negatives are a fairly small subset of those with breast cancer the Oncotype DX test is probably less conclusive.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited May 2012

    Just found this - am interested due to my severe osteoporosis. http://www.medicalnewstoday.com/articles/241240.php#top

  • ptdreamers
    ptdreamers Member Posts: 639
    edited May 2012

    That definitely sucks. I too have osteoporsis and do not need further loss. I am getting prolia shots every six months but there are questions about that also. What are we suppose to do???

  • MaryNY
    MaryNY Member Posts: 486
    edited June 2012

    I've only been Aromasin for a week and a half. Two nights recently I've woken up during the night to go to the bathroom and as soon as I moved got the most awful cramp in my lower right leg. I've occasionally gotten cramps in the foot but nothing as painful as these which feel as though they are deep inside the leg muscles. Are cramps a known side effect of Aromasin? Is so, what remedy is there, if any?

  • ginger_mea
    ginger_mea Member Posts: 135
    edited June 2012

    Mybee - I looked at my pathologies yesterday and don't see oncotype on it, maybe like MaryNY said because I was triple positive they didn't do it?

    MaryNY - I have never experienced anything like that yet from the A.I. I have gotten cramp in my foot.  Maybe you should check with the dr. if its something you get again, not sure if blood clots would be a concern in there or not, just saying...

    I had very high liver functions come out on my blood work done by my primary, I am wating to hear something he wants to talk to my Onc first???

    Ginger

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    My fingers sometimes cramp up when I'm typing or they "freeze" in a curled position and I have to use the other hand to straighten them!  Very odd. Calf cramps occur on and off. Did not have this before being on Aromasin, but since going off the drug I still have the cramps so not sure if Aromasin is to blame..  I think there can be many causes of cramps. 

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    That's right - now that you mention it.  I do eat a banana every day, because of my Afibs mainly. I am going to google potassium and aromase inhibitors and see what comes up--

  • MaryNY
    MaryNY Member Posts: 486
    edited June 2012

    I will start eating a banana a day to see if it helps with the cramps.

    Dogsandjogs, I see you started a thread back in February on Aromasin and potassium but got no responses. Your fingers cramping up when typing sounds painful. I would hate for that to start happening. 

  • vivirasselena
    vivirasselena Member Posts: 51
    edited June 2012

    Well, I just got off of Arimidex...and my doc switched me to Aromasin.  HOPEFULLY........the SEs of this will make it tolerable. Last stop is Tamox.

    Dang. 

  • proudtospin
    proudtospin Member Posts: 4,671
    edited June 2012

    I am on aromasin and yeap, cramps big time in legs at night and also in feet when I swim

    but if I eat  banana, no cramps.

    nurse at my PCD office said there is something about the banana that the potassium goes right to where it should!

    got sick of bananas so now making a smoothie with them

  • kira1234
    kira1234 Member Posts: 754
    edited June 2012

    Well starting aromasin today! Let hope no rash or constant runny eyes and coughing from this one. I really didn't like the eczema big time! I had all the aches and pains as well as the hot flashes from the Femara, so guess that will be similar.

  • stephN
    stephN Member Posts: 133
    edited June 2012

    I started aromasin about a month ago after the side effects of Femara got to be too much.  So far so good.  I'm keeping my fingers crossed.  I do have hot flashes, but I think I would have those anyway since I had my ovaries out in Dec.

  • lulubee
    lulubee Member Posts: 903
    edited June 2012
    Lessons I Learned Last Night

    Lesson #1: A person who accidentally takes her nightly dose of Aromasin twice will be physically incapable of sleep for approximately 12-15 hours. 

    Lesson #2: In the dark, it actually takes sixteen hours for eight hours to pass. Which, I'm pretty sure, is why I wound up thinking about Einstein for an hour between exactly 3:46 AM and 4:16 AM.

    Lesson #3: The key to reading the entire book of Numbers in the Old Testament in one sitting without getting the least bit sleepy is to take a double dose of Aromasin first. Now we know.

  • MaryNY
    MaryNY Member Posts: 486
    edited June 2012

    lulubee: I thought you were on Aromasin for some time but looked and see you've only been on it for two weeks (same as me). Are you sure the insomnia is from the Aromasin? I'm just hoping I don't get this side effect. Wondering if the sleeplessness typically strikes this soon.

  • lulubee
    lulubee Member Posts: 903
    edited June 2012

    Mary, the problem last night was I took it twice by mistake.  I haven't had trouble sleeping on the correct dose. I felt quite sure it was from the Aromasin, and both my onc and her nurse confirmed that connection when I saw them first thing this morning. Aromasin is mildly steroidal... and a double dose had me WIRED till almost noon today.  The research assistant at the oncology clinic just laughed when I told her I'd been awake for over 24 hours and why, and said, "Oh, no way are you gonna sleep on a double dose of exemestane!"

    So there ya go.

    FWIW, I was on Femara for over a year, and as long as I took it at night I didn't have insomnia with it.  I'm taking the Aromasin at night also. 

  • MaryNY
    MaryNY Member Posts: 486
    edited June 2012

    Lulubee: Yes, I did notice that you said you took it twice. But I figured that if a double dose kept you awake all night that even a single dose must have some effect on sleep. I've been taking Aromasin at night too as someone up above said it was working better for her that way -- I think less bothersome hot flashes. What I like about Aromasin vs Tamoxifen is the size of the pill. I was taking my 20mg of Tamoxifen as a split dose, 10mg in the morning and 10mg in the evening. At least that was the way it was supposed to be but I often forgot to take one dose and then would need to take the two tablets together the next time around. The tiny little Aromasin tablet is so much easier to take and somehow so far I haven't forgotten to take it as now I only have to remember once a day.

    I hope you can get a good night's sleep tonight. 

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012
    I was taking my Aromasin in the morning and couldn't fall asleep at nite until the wee hours.  The nurse suggested taking it right before I fall asleep.  So I do.  Right before I turn out the light, I take my little pill.  And it works, for the most part.  I wake up in 5-6 hrs. , but on work nites that's all I usually sleep anyways.  On the weekend, I am up an hour or so (yes sometimes reading the bible!) but then I go back to sleep and sleep on and off........if this is the worst, and I can reduce my recurrence, that is okay.  I had three babies that kept me up much more than this :)  Such is the life of a woman..............and sometimes I think it is still worrying about those three babies that keeps me up, even tho' they are now teens.Laughing
  • lulubee
    lulubee Member Posts: 903
    edited June 2012

    Mybee, I hear ya... I had one daughter who kept me awake round the clock as a baby, but I never lost one night of sleep over her as a teenager.  The other daughter slept beautifully as a baby, but kept me awake many nights all through her teens.  You catch it on one end or the other, if not both!

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012

    What is it with this wine thing?  Do you think the lack of estrogen makes us crave wine to compensate?  I read once (after my hysterectomy) that wine can increase what little estrogen you have left by 500%!  That's why it is such a risk factor.  And once I have a glass.........all I want is another.  I've never had this before.............Anyone else having this problem?  It's worrisome..............

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012

    The problem is it's difficult, once started, to stick to that one 5 oz. glass.  Also - I was told no more than a couple a week by my prev. BC team.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    My Dad's doctor told him wine was very good for your heart. He didn't have cancer though----lived to be 93!

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    I have a constant craving for sugar. Even after stopping Aromasin, I still crave it like crazy and ca't seem to lose the weight I gained despite jogging daily. I just joined a very intense exercise class which includes power-walking while doing arm exercises with weights, sit-ups, push-ups, stomach work etc.  Hope this will work.

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012

    Yes - I know it's bad for you. In essence.

  • fondak
    fondak Member Posts: 271
    edited June 2012

    I keep a thermal cup with ice water by my bed at night and wake up around 3 times during on average with a very dry mouth.  It's not that I'm thirsty it's just the dry mouth.   I have did that with chemo too. 

    Also, I dream a lot on aromasin. 

    As for joint pain, it's the other problem I've have with aromasin.  My knees, hands, neck, and back all feel like they belong to a very old me.

    I had to stop for two weeks with my recent ooph/hysterectomy and after about 5 days I felt so much better with sleep, energy and my joints.  I told the oncologist and she told me that my fatique was most likely from just finishing radiation and the joint pain should be much better after 6 weeks.  If not, she said she would change to something else.

    It's strange to go through a surgery like that and feel so much better shortly after than you did the week before the surgery. 

    Hopefully I will adjust.

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012

    It is strange.  I know that during the break between Arimidex and Aromasin I did feel a lot better. But....what acan you do.

    It's funny now that you mention it - I feel like I dream a lot too.  Wake up in the morning......just full of thoughts.  Didn't think that it might be related to the medication.

  • rgiuff
    rgiuff Member Posts: 339
    edited June 2012

     I also just started aromasin on June 3.  I took a 4 month break after stopping 3 years of tamoxifen in Feb.  I really don't feel that strongly about taking this medication with my Stage 1 diagnosis, but I told my Oncologist I'd at least try it, so I feel obligated to follow through. 

    On tamoxifen, I found that my mouth was often dry and that side effect did finally seem to go away after stopping.  Funny thing is, my hot flashes got worse after stopping it.  I finally got to the point with a little help from black cohosh, where they became minimal again.  Now that I've started the aromasin, I am noticing just a few slightly more intense ones at certain times of the day only.  I also am already noticing a drier vaginal area.  And I've had a rough time the past few nights with falling asleep.  I've had chronic problems since going through menopause with staying asleep, but never really with falling asleep, except when I used some testosterone gel for libido problems. Now I'm also getting that wired feeling again, so it's interesting to think that maybe it's the steroidal nature of aromasin that could be the problem.  I'm open for suggestions about what time of day is best to take it to avoid that problem, because if this becomes chronic, it will be a reason for me to quit.  My sleep is important! 

     I'm also wondering if whatever effects I'm feeling already will get more intense with time, as it's only been 4 doses I've had so far.  Not sure how long it takes to really kick in, but I think it's a lot sooner than tamoxifen.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    I already had weird dreams due to Flecanaide (an anti-afib medication) They are very strange and I wake up tired. In the dreams I'm either lost and trying to find my way home. It is always in Santa Monica where I used to work so I do know my way home from there. But in my dreams I get stuck in an industrial section and when I ask for help I am ignored or chased away. Or I casn't find the right bus to take!

      The other dreams involve packing stuff for a trip and I can't get ready in time and the others leave without me. And the third one is trying to find a bathroom, but the bathrooms have no doors or they are occupied.

    The Aromasin did not add other dreams (thank goodness) but did give me dry mouth and a dry cough like someone else mentioned.

  • mybee333
    mybee333 Member Posts: 672
    edited June 2012

    Interesting dreams.  All with themes of being left behind or finding things inaccessible.  Being left.

    rgiuff- I could not fall asleep with the Aromasin. At the nurse's suggestion i take it the instant before I turn off the light.  It helps usually.  Last night I did have some trouble falling asleep. testosterone can make you feel wired. I've wondered about an increase in it, at least temporarily as there is so little estrogen left. My night sweats have improved with time.  I have been taking it about two months.

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited June 2012
    Hi, Everyone, in the years I took aromasin, I took it at different times of the day. Finally, the one that seemed to reap the most benefits, was taking it after lunch!!! I hope that helps. I was on aromasin for 6 1/2 years. It definitely has kept me cancer free and estrogen free. I don't think I have an ounce left, he,he!!!Smile
  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited June 2012

    Kathy that is wonderful!  And you haven't had any bone loss?