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Arimidex - Coping with the SE's

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  • NatureGrrl
    NatureGrrl Member Posts: 681
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    Wrist is scads better today.  I'm still going to ice it and ibuprofen it but I can move my hand/arm without setting off a lightening bolt of pain; in fact, it can still hurt if I move it the wrong way but compared to yesterday it's a twinge, not a bolt.   Thanks, everyone, for all the help!  Sometimes I seem to forget the simple things!  

    Lakewoman, thanks for the tip! You rock!  Now I just need to find a man.... Wink (not likely given my current lifestyle!)

    MTG, when my mom started needing help with jars I bought her several different kitchen-helping-devices and have my own set of them... not sure why I thought I should get my own but now I'm glad I have them!

    Didn't know T builds bone... interesting.  Too bad that's not true for the other drugs!

    Enjoy the day, everyone!

  • sue-61
    sue-61 Member Posts: 262
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    Lakewoman, it is always nice to see your posts. Happy hunting, Sue

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
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    Thx, Lakewoman.  I need to look up the Toys in Babeland place as not very far from where I am being treated here in Seattle.  Now, I really get the benefits of keeping my libido intact throughout active treatment.

    Nature Grrl.....you mght want to duct tape your hands so that you can't use knitting needles for a few more days.

    When I was doing LIVESTRONG about 2 months ago, the Seattle Cancer Care Alliance volunteers were out.  They couldn't believe I was out there doing 45 miles in the pouring rain just 12 days after finishing radiation.

    Another funny exercise story from last night.  I went out to do a ride yesterday afternoon with the idea of hitting a friends photo exhibition at the Washington Bicycle Alliance prior to building party on roof deck here.  The first Thursday of every month is Art Walk, so basically a free party with most of the art galleries downtown participating

    However, some of the downtown area is "mixed" to put it mildly.  So not finding the place (but great galleries I didn't know about), I asked directions.  A couple of the "residents" directed me to bicycle storage at the Mission.  I decided that another day was a better idea.

    At least a good story for roof deck party later......

    Other learning is that even the homeless in Seattle often have bicycles!!!!!

  • crazy4carrots
    crazy4carrots Member Posts: 624
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    Medigal and anniealso:  Regarding purchasing Arimidex from Canada.  Just want to assure you that Health Canada regulations are every bit as strict as FDA (in some respects, even more so, such as no antibiotics allowed in milk for sale).  There is absolutely no reason to worry that Canadian-made arimidex is any less safe than U.S.-made.

    As for the cost:  each province negotiates with the pharma companies to get the lowest possible price for drugs on their formulary -- a major advantage of our single-payer system.

  • ruthbru
    ruthbru Member Posts: 46,929
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    Nature, my hands get achy when I think about a knitting marathon! I used to cross stitch a lot, but got pretty much out of the habit once I couldn't see good enough to get the needle threaded, and had to use HUGE count material; mine was a SE of AGE Frown!!

  • Lowrider54
    Lowrider54 Member Posts: 333
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    meadowlark - not so personal...once one hits stage iv with this crap - personal goes out the window - take a look at the "you know you are a cancer patient when..." thread. That said...here's the poop scoop - sorry about the length - blame it on having a 'Chatty Cathy' doll growing up...

    When chemo ended in March of 2000, scans, including full body bone scan, showed NED.  Tamoxifin prescribed even though chemo put me into premature menopause - I physically was not considered 'post menapausal'.  Yearly tests - mamo, blood work and general physicals and obgyn.  At the 5 year mark, mamo and scans again and NED and stopped the Tamoxifin.  I did the happy dance big time!  I was a success, I beat it! 

    Same yearly mamo, blood work and general physicals and obgyn, nothing to indicate any activity or a reason for any further testing other than an ultrasound at one mamo over a 'thickening' that turned out to be my normal lumpy boob. 

    Then comes year 10 - clear mamo but since I was now 55, doc thought a breast MRI was in order for a baseline.  They did an xray to see if my expander could go through an MRI.  Nope but  a funny spot needed further investigation. CAT scan.  More funny spots.  PET scan - sprinkles light up.  Expander HAS to come out as we need the biopsy and it is guided by the MRI.  What a week - breast surgery in the am, MRI in the afternoon on 9/09, home, bone biopsy all day on 9/11, home, colonoscopy on 9/14 and the final  on 9/16 - bone mets - NO local recurrence.  Started treatment that day.

    That was how it went.  Today, it is much different.  The new technology and testing are so much better and detection of the smallest indication of a potential  recurrence is found very swiftly.  Most centers are now able to mamo, ultrasound, needle biopsy with instant results so steps are taken very fast should anything show up.  Mine was mets without a local recurrence.  It was a happen chance that it was found in September as you read above. 

    My suggestion would be to have a breast MRI along with the mamo as some are now recommending and automatically doing. - a breast MRI may have detected the sprinkles in the thorasic area   If you had an initially agressive bc, scans routinely would be in order. Staying healthy with diet and excercise are always good.  Know your body and if it starts acting weird or you start getting pains in odd places, just go to the doc - I did - a year prior they found I had brusitis in my left shoulder. Make sure everyone KNOWS your history - if there were spots on the x-ray, they would have seen them.  6 months later, gall bladder out with more tests that could have shown it. 

    And yes, every time something is weird, I did automatically think - the cancer is back so I would pretty much have the GP run a full set of blood work to check everything.  Try not to let it be the forefront of your life - it will be happy sitting always in the back of your mind, you don't have to encourage it...LOL. 

    Here is the present - lesions are tiny sprinkled throughout the entire spine - I do not have enough 'measurable lesions' to qualify for a trial. It is not agressive.  It is responding to treatment.  The funny spot in the lung and the uptake in the lymph nodes is completely resolved and the spots are smaller except one area at L3 which is now considered 'measurable' - and I can't find my recent MRI to tell you the size, but it is small.  It is better living through pharmacueticals, still working - pondering when to stop, just started a new treatment option since onc wants NO progression even if they was resolution, stabilized my finances and now it is all about being stress free and living life.  I am not a statistic anymore!

    LAKEWOMAN - HOORAY...tell these gals all about how to get your libido back!  It can be done!

    Happy Friday and Huge Hugs to All 

    LowRider

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    Claire, laughed out loud at your duct tape comment -- partly because it was funny, and partly because the first thought after "my wrist is better!" was "I can start knitting again!"  Of course I immediately quashed that idea.  Silly brain to send me such thoughts!

    And great story, I can definitely see homeless in the NW still having bikes. 

    Ruth, I know what you mean about eyes and cross-stitch. And SE's of age! :)  I still have two x-st projects I want to finish (one was for my mom, but I'll finish it anyway) -- fortunately with trifocals I can see fine to still do this -- but before I got them (9 years ago), yikes!  I was turning into my grandmother:  "Sally, can you read this medicine label for me?'   :)

    LowRider, thank you for sharing your story.  I especially appreciate you comments about trusting what your body is telling you, and your terrific attitude.  A big hug to you!

  • ruthbru
    ruthbru Member Posts: 46,929
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    Thank you from me too, LowRider; you are an example of really living (with or without cancer) a full and interesting life (if I can judge from this site, and The Date site Wink). Happy weekend to us all! Ruth
  • Medigal
    Medigal Member Posts: 183
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    lindasa:  I have no personal reason to believe that Canadian drugs are not as safe as our US drugs. I don't exactly hear news reports of Canadians dropping dead on the streets from their meds!  I was just going by the info I received on the phone from an Astra Zenaca rep trying to convince me that I was risking quality even purchasing "their" Arimidex from Canada instead of US.  Since I don't "yet" have "STUPID" branded on my forehead, my common sense told me that AZ just wanted to keep us buying from them in the US since, at that time, there was no generic and we were paying a small fortune for the drug.  I am SO thrilled that we don't have to be pawns to AZ's price greed, in my opinion, and can have cheaper choices whether we buy from Canada or the generics in US.

  • jsmiley60
    jsmiley60 Member Posts: 31
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    Well guys I got my questions answered, but I'm a little scared to start on Arimidex cause of all the se's you guys talk about. I started taking Vit D, calcium & glucosomine/chondroiton last weekend. I already have sore joints in my knees, sometimes back. I feel like I have aged 10 years in the last 11 months since my diagnosis!! Ugh! Please encourage me!

    As far as libido goes, mine is definitely back. I had absolutely NONE during chemo. The other day I saw two men with their shirts off and almost had a heart attack! Too bad that's all I get.........I'm not married or even dating anyone. Gee its hard to meet single gusy when you are sick from chemo and having the boobs removed. Lol! Maybe sometime soon I will get a date!

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    jssmiley.... please, don't be afraid of Arimidex.  At least not yet.  Many  have no real SE's and of those of us who do, the SE's are often very managable.  However, if your SE's do turn out to be in the unmanageable range -- you can always drop the Arimidex, and/or try another Al.  Give it a little time -- most of my SE's passed quickly -- often, with time, our bodies adjust.  Only you can decide if you want to try to weather it out or not, but don't give up if you aren't sure.  I felt like I aged a TON during treatment compared to before, but a lot of that was chemo and rads, and I'm getting my mojo back.  I've been on A 6 months and feel no need/reason to quit.

    Yeah, dating is a whole 'nuther issue... but from stories on theseboards I know there are good men out there. At least you got the heart attack! :)  I get mild pleasure out of seeing men without shirts (ah, how I love construction workers!) :) but no stronger vibe.  Here's hoping we both find dates/good men!

    Check with your onc. and consider adding fish oil to your regimen.  

    A warm hug!  

  • chrissyb
    chrissyb Member Posts: 11,438
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    Hi jsmiley, I am on Arimidex and have been for 15 months.  I have had a range of SE's, but I have found that most only last a short time and are quite managable.  On the whole I feel pretty good, a little slower than what I was but that's not all bad.  Be encouraged and don't be afraid, give A a good try you may be surprised.

    Love n hugs, chrissyb

  • ruthbru
    ruthbru Member Posts: 46,929
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    Jeanne, don't be afraid of Arimidex. It is the biggest gun in the estrogen positive woman's arsenal, and we are so lucky that we can use it (ask any of our triple negative sisters!). Most people have few SE, and most of those diminish with time.....plan to be one of them until proven else-wise!  

  • patoo
    patoo Member Posts: 5,243
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    And as our friend, JO-5, always posts - SE's are easier to treat than BC. 

  • mohonda
    mohonda Member Posts: 10
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    This is to yoga Mom, in regards to effexor, I must say I did try that for 2 weeks and had horrible sleepless nites so bad I had to discontinue using it. I still wake up from hot flashes, to pee or from pain. But I started taking a calcium/vit d and magnesium product its called citrical  by bayer. Excellent product I was in the vitamin industry for over 15 years. I just started ameridex 2 weeks ago I am taking the generic version. Now, I have severe knee pain in only 1 knee when I wake up then it goes away. Has anyone experienced sdx in the beginning and then have them taper off or disapear? I am trying to find the other Ameridex thread. Can someone tell me where it may be. Oh and yoga mom I lived in the east bay and moved in March to FL to live with my brother because of the cancer. I sure miss CA

  • ruthbru
    ruthbru Member Posts: 46,929
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    I have known several ladies who were quite achy at the beginning (myself included!), who just kept moving anyway and that really diminished after a short time (for us anyway).

  • yogamom
    yogamom Member Posts: 6
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    Hi Mohonda --  CA misses you too (it's been cold here lately - in case that makes you feel better Smile).  Thanks for the info on the supplement and your experience with effexor.  As to the other Arimidex thread, I too wonder where it went but am v. happy to have this helpful one.  Someone started a new thread with the same name the other day, and I wonder if that has anything to do with the other one's disappearance.
  • Pawprint
    Pawprint Member Posts: 354
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    Hi All...I am getting ready to join the A-Team. Having my BMX w/TE this Fri Aug 13. Hospital one night then home. Starting Arimidex Saturday night Aug 14. Onc also gave me Fosomax cause i have osteoporosis. I also have osteoarthritis. I am 56 years old, post menopausal. Just wanted to say hi to everyone. Thanks for all the great post on the SE's. I will be back in touch here on this forum post surgery when my arms work and fingers can type.Smile
  • NatureGrrl
    NatureGrrl Member Posts: 681
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    mohonda & yogamom, this might be the thread you were thinking of (see below)... things got a bit heated on it for awhile so a new thread was started (this one) -- I don't know of any others with the exact same title as this one but the one titled "Arimidex" was about SE's.  Take a look and see if that's what you were looking for.  Claire posted a terrific tomato pie recipe on it recently Laughing

    OK, I can't get a link to work, sorry... but look for the thread titled simply "Arimidex".  It has over 3500 posts.  It's in the same forum as this one.  

  • mohonda
    mohonda Member Posts: 10
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    I wrote yesterday on how since being AX generic I have been waking up with severe knee pain. So last nite before I went to sleep I took 1 tb of fish oil and 2 gel caps of Evening Primrose oil and No Pain. I can;t believe it. Actually I can but for this to work at once is remarkable. This leads me to believe its inflammation that is causing achy joints. I feel great todayCool

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    Glad you feel great today!!  I think it's inflammation, too, although I have no real proof, just my own experience and gut feeling.  I started fish oil this week and I wonder if it's responsible for my wrist getting better so fast.  No idea, but I've never had that degree of pain subside so quickly.  My knees are still a bit creaky but my hands & elbows have quit hurting.

  • KayNYC
    KayNYC Member Posts: 4
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    I started the Arimidex in late June. Doing well. The dry eyes that appeared to be a SE was well managed with artifical tears product. Aside from some joint stiffness in the AM, when I get up, I am feeling good. I am working on incorporating more activity into my life to drop the 25 pounds I need to bring my BMI down to a healthy range. Can't return to my strength trainining except on a limited basis since I have lymphedema of the arm/trunk/breast that will get worse if I use the heavier weights I used in the past to keep my weight down.Doing well with the nutrition part of the equation. Mammo, surgeon and Med Onc appts in late Sept. I will be doing the Komen Walk/Run in September.

    K

  • pj12
    pj12 Member Posts: 18,108
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    Hi K... are you just joining us? I may have missed previous posts. So sorry you are experiencing the edema. Where do you exercise in NYC? I walk 2 1/2 - 3 miles a day on the streets of my small town. Can you do that or do you have to go to a gym? I guess Central Park is an option. My son and his wife were just in NYC for their anniversary... love it! Last time I was there... 1955!!! 

    pam 

  • lakewoman
    lakewoman Member Posts: 221
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    WON"T be online for about week or so BUT prayers still in my heart..for all of you!  TY so much for your responses to my 'personal 'post..Hey Sue TY for remembering about hunting...and how I laughed at the post regarding me being on Mount Rushmore..our son is going to be there this week haha! OH &  speaking about hunting.hahah..MY ARTICLE WILL FINALLY BE IN OCT issue of Woman Hunter..I will post the  website and ONE can order it for $3.00 and since issue is all related to CANCER ,,part of that will be  for CA contribution!

  • ruthbru
    ruthbru Member Posts: 46,929
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    Hope you will be off doing something really fun, Sharlene......maybe something to do with sex, or hunting, or hunting for sex Wink?!
  • suzieq60
    suzieq60 Member Posts: 1,422
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    I'm glad some of you are getting positive results from the fish oil. I started taking it weeks before I started on the Arimidex so maybe that's why my SE's are minimal so far.

  • jessamine
    jessamine Member Posts: 123
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    Yes, I was going to post about the primrose oil too- definitely something to b aware of. FYI, the study showing soy to be dangerous was discredited- it turned out that while soy derivitives are dangerous (isolated soy protein, isoflavones) whole soy foods (tofu, edamame, tempeh, miso) are actually extremely beneficial (as had originally been thought). This isn't really the thread for it I suppose but I looked into it a lot (as a vegetarian trying to eat enough protein it was a big deal to me) and the new studies are solid, and I wanted to share.

  • hrf
    hrf Member Posts: 706
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    The most recent information I received was to stay away from soy.

    Some recent studies were done in Asia where women eat soy as a staple starting as children. That's a different situation.

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    There's some good, strong research that shows that the phytoestrogens in some soy (as differentiated by jessamine) bind up the ER receptors so that our own body estrogens can't access and feed them, and therefore reduce the risk of recurrence.  There still needs to be more research but the outlook is good.

    My own oncologist is very conservative and still advises against any soy except in low quantities, but after all I've read on this I'm inclined to go with my gut and trust tempeh, tofu, etc.

    The idea of soy *preventing* breast cancer is a different subject. 

    Everyone has to do what they think is best and follow their own gut, but when I look at the problems with meat and dairy as it is produced now, soy seems far safer for me as a BC survivor.  But as I said, everyone has to follow their own path. There's still so much that's art and not science and there aren't always definitive answers.

  • MTG
    MTG Member Posts: 337
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    jessamine and NatureGrrl - What's the current thinking on pre-made Veggie Burgers, like MorningStar Farms and other similar products. I used to live on them; my surgeon calls it my "soy addiction". But have really cut back. Are they soy derivitives and thus BAD or just plain soy and so OK to go back to. Could one of you PM me with links to articles so I can read them and bring up the subject with my docs ?

    KayNYC - If you do walk for exercise in Central Park and want a workout buddy, let me know. I walk a few times around the bridle path and resevoir or sometimes thru the Park but lately I've been bad so could use the motivation.

    Jeanne - Starting  A doesn't require any commitment, esp now that the prices have dropped. You can start and see how you feel. Take it day by day. It's a lot less intimidating that way. You can stop, switch or look here for answers at any time !