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Arimidex - Coping with the SE's

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  • ruthbru
    ruthbru Member Posts: 47,052
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    Walmart has many different brands of dark chocolate from 70% all the way to 90% cocoa (which is pretty bitter, like baking chocolate). I have sampled most of them in the name of 'scientific research'.......Laughing. I like all of them in the 70-82% range. Many grocery stores carry them too. Has to say the % on the bar, not just the words 'dark chocolate'. One prescription you may enjoy filling, just don't overdose!
  • mersmom
    mersmom Member Posts: 79
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    Thank you for all your research and reporting to us in the name of SE's. I have had a really bad day and I can always count on one of my sisters to pull me back and give me a good laugh. Hate to go to bed unhappy.

    I think I will have to wander off to Walmart and check out the chocolate. 

    Hugs to all...you are in my prayers

    Teri

  • ruthbru
    ruthbru Member Posts: 47,052
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    Hugs, prayers and chocolate back to you, Teri!

  • Dilly
    Dilly Member Posts: 394
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    Hi Ladies, I have sent my A scrip down to Costco to fill, and asked DH to pick me up some calcium and magnesium, either together or separate supplements.  Everything he found had soy listed as a main ingredient.  Costco didn't have anastrazole and so DH came home empty handed and will try again tomorrow.  Does anyone have suggestions or hints for which calcium supplements have no or little soy?  My DEXA came back decent, and onc suggests I begin A by supplementing with Calcium & D to help maintain bone density.  I also want to add fish oil - again I am looking for suggestions.  What supplements help you?

  • ruthbru
    ruthbru Member Posts: 47,052
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    I take VIACTIV Calcium chews, which also have vitamins D & K. It has soy lecithin listed as it's last ingredient. From previous discussions (I can't remember when or the thread, post-chemo brain?), I believe that thesoy lecithin is different than soy and is OK to take. I will be off line for a few days. Hope everyone stays well & SE-less!! Ruth

  • hrf
    hrf Member Posts: 706
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    For fish oil I use the NutraSea brand. It's a little more money than some others but it has no soy and no additives. Plus it is made from small fish like herring and anchovies which means fewer toxins which you can get with larger fish. I use Bone Basics for calcium and there is no soy in it.

  • molly52
    molly52 Member Posts: 142
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    Mini "Scientific" experiment.

    I received one of those emails that say forward to 7 people, etc.  the topic was we don't drink enough water and coke is bad for us.  It said Coke leaches calcium from our bones.

    My mini experiment is - those who have poor dexa scans - do you drink a lot of coke?

    and those who have excellent dexa scans - do you drink a lot of coke?

    I really like the chocolate medicine.

  • ruthbru
    ruthbru Member Posts: 47,052
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    good dexas; one, maybe two cokes a day at most

  • weety
    weety Member Posts: 371
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    I think it might be the caffeine that leaches the calcium from the bones, not the coke itself.  My doc told me coffee does it too.  I drink coffee daily.  I'm 39 and DEXA scan just showed osteopenia.  SIGH. . .

  • ruthbru
    ruthbru Member Posts: 47,052
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    Oh, Oh......if it's coffee, then I'm screwed!!!

  • jessamine
    jessamine Member Posts: 123
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    For those curious- (I think it was back on the old thread that dosages came up), my onc told me to switch to half a pill a day. I'm having a hard time with SEs and my estradiol levels were basically zero- he said keeping them at 6 or so was better (balancing BC risk with the risks caused by no E -- he said for therapeutic purposes it just needs to be under 11, I think, don't attack me if that's totally wrong that's what I remember off the top of my head- I'll get the real info after I see him next week) and that we should try this. I'm seeing him and getting retested in a week- meantime I've already gone to half and just a few days in feel a million times better! I will keep you all posted, as it seems to be unusual. I'm also going to be doing the tests for the other forms of E myself just to be sure.

  • karen1956
    karen1956 Member Posts: 4,521
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    I haven't had a coke, or any other soda since I finished chemo 4 years ago....and never have drank coffee....gave up caffeine years ago.....so for me, chemo and AI's were the cause of my loss of bone density....

  • loulou40
    loulou40 Member Posts: 31
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    My DEXA showed osteopenia (T score hip -2.4), I don't drink Coke, never have and only have one very weak coffee a day.

    My low BMD is caused by Chemo induced menopause at 39, being small framed and not eating enough calcium during my teenage years.

  • pj12
    pj12 Member Posts: 18,108
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    jessamine,

    Congrats on having an onc who will do estradiol levels and consider them in your treatment plan! Most won't but it seems basic to prescribing meds.

    pam 

  • painterly
    painterly Member Posts: 266
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    Jessamine

    Thanks for sharing your estrogen level result. My level is about the same, around 6. It will be interesting to compare our next results. Mine will be in October.

    I am also eating lots of anti estrogen foods to help with the lowering of estrogen levels (broccoli, cauliflower and b.sprouts).

    Glenis

  • weety
    weety Member Posts: 371
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    I had my estrogen level checked right before I started an AI (actually it was my gyn's advice to check it, not my onc)  The test they used was not sensitive enough to give a smaller number, but my numbers came in at <12, and remember that is before starting the AI.  I am very small framed, petite and thin, so my gyn questioned whether or not I even needed to go on the AI.  He thought that my minimal fat would not be producing much estrogen and the adrenal gland would be minimal as well.  My onc was still adamant about needing it, though, so I went ahead and started it.  I wish I knew if I was putting up with all this achiness and bone density loss for nothing.  I wish I had done a more sensitive test and gotten my exact number from the start, but I have Kaiser and that's the one they use.  I suppose I could go to an outside source and pay myself, but now that I've started the AI, I'd have to stop and wait till it was out of my system.  Does anyone know how long that would take?  Meanwhile, is the cancer going to take off like a wild fire?  I'm afraid to stop!  What advice does anyone have?

  • jessamine
    jessamine Member Posts: 123
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    I don't think you would have to go off the A to get tested- I know I'm planning (along with the drs' ok) to keep up on both estradiol and the 2-16 ratio (less mainstreamed way of testing other forms of E in the body) without stopping the A. If it was low enough on, maybe you would feel okay going off long enough for that test? According to my onc- (maybe just RE:my case but I got the idea it was general info)- What the AIs target are slow growing cells. In my case, I had chemo, and was told that that had taken care of the fast growing cells and that since we were going after the slow ones now, we had plenty of time to tweak the tx and get settled in to it, because nothing would happen that fast. It's scary, so I don't want to go too slow, but it is something to know, stress-wise.

    The idea with my treatment plan is to take the half dose of A and make up the difference with the also effective (but un-side-effect-y b/c they influence the other forms of E) DIM and Calcium D-glucarate and flax. I don't want to get into this whole argument, but they do work. If you don't want to do take them, don't. I'm just letting people know what I'm doing cause it's interesting to know what other people are doing/ are trying. I spent the last month taking full dose of A and stopping all those methods as a test measure, and my levels went UP slightly. ALso, they effect mostly the other forms of E- so the idea is this way I will be covering all my bases. Of course, if my levels shoot up on the lower dose, I'll go back up.

  • MTG
    MTG Member Posts: 337
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    Jessamine - I for one find your treatment plan fascinating and cutting edge. It's nice to know about the various options out there !

  • MTG
    MTG Member Posts: 337
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    Ladies - Just did a quick check on Coke leaching calcium. Turns out it the phosphoric acid not the caffeine that causes the probelm. The good news, coffee does not leach calcium. The bad news - VARIOUS sodas, whether diet or not, can contain phosphoric acid since it's "added to many kinds of soda pop to help keep the carbonated bubbles from going flat." http://life.familyeducation.com/nutrition-and-diet/healthy-lifestyle/36000.html .

    It gets more confusing because not all soda has phosphic acid. According to the same source I cited above, Tab, Coke, Diet Coke, caffeine-free Coke, and Mr. Pibb (whatever that is) have Phosphic Acid and so do leach calcium.  On the other hand, Pepsi Free, Diet Pepsi Free, Like Cola, 7-Up, and Mountain Dew had no phosphoric acid in them.

    I dont drink soda but drink tons of Sltzer, either Vintage or ShopRite. Although the Vintage lists "carbonated water", it gives no clue as to how it's carbonated. So I'm just left scratching my head.

     By the way, for those who are interested in the Whys, here's one explanation: "Because good health depends upon our bodies being able to maintain a one-to-one balance between calcium and phosphorus in our systems, calcium is released from our teeth and bones into our bloodstreams to help balance the phosphoric acid in the pop we drink. Eventually the phosphoric acid is excreted, taking with it the released calcium. Thus, a habit of soft drink consumption actually robs our bodies of calcium, leading to a condition known as osteoporosis - soft teeth and weak bones."" (from the same link I provided above)

    For other articles, see                                                                      http://search.aol.com/aol/search?query=leach+calcium+cola&s_it=keyword_rollover

    Edited to add: Just check snopes - a good sourse for looking into the varoius internet warnings that we all receive and it points out that the concentration of Phosphoric acid in coke is relatively weak so who knows what the truth is. http://www.snopes.com/cokelore/acid.asp

  • karen1956
    karen1956 Member Posts: 4,521
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    Weety....I took AI's for 3 1/2 years before stopping 5 months ago....just saw my onc today for 3 month appt....he would really like me to give AI's a chance again, but says wait till I'm ready..then see how it goes...if side effects are bad again, then stop saying I gave it my all.  I feel very comfortable in my decision...the cancer is either going to come back or not come back....and I don't believe anything will happen quickly. I have a good weight, eat healthy and try to walk daily....since stopping the AI's...most of the side effects are gone....I am walking much farther than before...walking 3 1/2 mile a few mornings/week....could never have done that on AI's.....One of the things I've noticed since stopping AI's is people commenting that I "look good"....it is the first thing my onc said to me when he walked into the room.  I don't remember hearing this so much when on the AI's....my QOL has improved both cognitively and physically.

    Jessamine...one of my docs mentioned DIM a couple months ago when I made the decision to stay off the AI's atfter a 2 month break....but I haven't checked it out yet....forgot to ask my onc about it....I do take magnesium, and VIT D...onc wants me to start back on calcium (stopped because it binds me too bad)...also stopped my Actonel when I stopped the AI's...if onc has me do a bone density again after my November appt depending on the results if I'll start back up.....

    LouLou....I'm also osteopenic...was borderline osteoporosis after a year on AI's but Actonel brought scores back into osteopenic range and stayed stable.......

    I'm trying to take only what I need to stay healthy and do my best to keep the cancer from coming back....Don't remember if I've had my estradiol levels done or not.....but I don't worry about it....I was heading into menopause at time of Dx...chemo put an end to my periods then with ovaries out, I'm sure the only estrogen is the little bit other glands make....maybe I have my head in the sand....

    Wishing us all many years of dancing with NED.

  • one-L
    one-L Member Posts: 653
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    I am new to this thread, but have been reading the post and find them very interesting and informative.

    I have been on Arimidex for 5 months and the SEs are just now starting to affect me.  My hands are beginning to do the freeze up thing and I wake up in the night and boy do they hurt.  My knuckles sound as if they need to be oiled and feel like they are clicking instead of moving smoothly.  My feet hurt in the morning and when I take that first step in the morning, I am not sure that I can keep my balance.

    I do take gabapentin, for neuropathy in my arm.  I haven't noticed that it keeps the joints from hurting.  I am on a dose of 4 x 300 mg each day.  

    I went to my GYN today and he wants to switch me from Arimidex to Evista.  I also take Actonel, because I found out I had osteopenia when I had my bone density test done, right after I finished radiation.

    I will talk to my Onc tomorrow, since I haven't heard too much about Evista.  Ok, I hadn't heard anything about Evista until  today.  It does say it will not work for  pre-existing conditions, but since I have had the cancer removed and have NED then I think it would  keep cancer from forming again.  At least that is my take on it.

    So I guess my question is, have any of you had any experience with Evista?  If so what did you Onc say about it.  Did you continue to take Arimidex with the Evista?  So many questions and I just hope someone can help me get through this without so much pain.

    Thanks,

    Juannelle

  • weety
    weety Member Posts: 371
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    Does anyone know anything about aredia?  My onc is suggesting I get this for my osteopenia, but I can't find ANYTHING on it (except I can find some stage IV gals on it) when I do research.  I think it's a bisphosphonate.  Onc said it was "standard" recommendation for women with osteopenia and on an AI.  Why can't I find much about it then?

    Juanelle, I don't know much about evista, but I do remember at one point that my onc was thinking about evista since I was not a candidate for tamox (mom had uterine cancer). I have since had my ovaries out, so now on an AI.  I do think I remember her saying it was usually used for women at high risk of getting breast cancer (before breast cancer, not after) but that there just hadn't been any studies yet done on it for women who had already had breast cancer. Sorry I can't help any more than that.

  • chrissyb
    chrissyb Member Posts: 11,438
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    Hi weety, the link you are looking for is

    www.medicinet.com>home>pamidronate-injection index

    I have looked at this site and I think it will give you a whole lot of answers.

    Love n hugs. chrissy

  • chrissyb
    chrissyb Member Posts: 11,438
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    Weety, if you do a Google search with the word 'pamidronate' it will be the fourth listing on the page.  I'm pretty sure this will give you the information that you are looking for.

    Aridea is a pamidronate not a bisphosphinate.  They work in a very similar way.  Good luck, hope this works for you.

    Love n hugs. chrissy

  • kathylev
    kathylev Member Posts: 56
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    Wow!  I've stayed away from the boards for a while hoping it would decrease my anxiety and stress and help me focus less on BC for a while.  I've been on Arimidex for about 3 months now and went back to the old thread to see if anyone had addressed the SEs I'm feeeling and am so upset by the mean-spirited posts of some on that board.  Especially the one who rather viciously said "Arimidex could be the next drug exposed as a dud for adjuvant therapy".    Do they really think we are not aware of the side effects and the possibilities of reccurence?   The arrogance and spitefulness of those posters is apparent, what's unclear is why they turn it against those of us that suffer from the same illness as they do.  I'm grateful to Lowrider for starting a new thread for those of us looking for ways to cope with the side effects of the treatment we have decided on. 

    Juannelle -  My hands hurt too.   Mornings are worse.  My hands are usually numb when I wake up and lately my fingers have been cramping. I think the cramping actually wakes me up.  I have a constant dull ache in my fingers all day long. I can't say it stops me from any activities,  but I worry that it may get worse.  

    Sunflowers - I'm taking glucosamine and will try the wrist splints.  Thanks.

    Kathy

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    Juannelle, try googling "aredia and breast cancer."  I saw quite a few links although I didn't read any.  You might find what you're looking for there.

    I'll second wrist splints.  Very helpful, especially when I wore them at night -- it kept me from sleeping with my wrist and fingers bent/curled up, which seems to aggravate my wrist/hand problems.

    Other than that, I've been doing much better since I added fish oil to my regimen (along with vit. D3).  My results are only my results and anecdotal, but there are many things worth trying if your dr. approves because some of them seem to help a great deal of women.

    one-L, gabapentin didn't stop me from getting aches and pains from A, but when I went off the gabapentin, the pain increased quite a bit within days... it was extremely hard to stand up, etc..  As I've mentioned before, I didn't make the connection until my pharmacist suggested I go back on it.  Pain subsided within one or two days.  I'm not going off of it again for awhile!  Sorry, I can't help with Evista... 

    on drinking sodas & calcium, I don't drink them and haven't for years (maybe a couple of times a year I have one). My dexa was great but I attribute that to the estrogen I was on for years following a total hysterectomy, and not to not drinking sodas.  I'd be more cautious about the sugars and artificial sweeteners in sodas than the caffeine or phosphoric acid.

    kathylev, I think my pains started at about 3 months but they did subside with time, and as I've been on A longer, I've been experimenting and adding things that seem to help.  As always, check with your dr. before you try anything new, but please know there is help and you don't have to suffer. 

  • MTG
    MTG Member Posts: 337
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    A question for those of you taking the 50,000 IU Vitamin D Pills:

    My Mom's just been prescribed it, do you 1) Take the pill at any particular time of day ? 2) With food, esp a fat ? 3) any SE - I think some have had nausea - that can be minimized and how ? 

    Thanks all.

  • jsmiley60
    jsmiley60 Member Posts: 31
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    Well ladies my radiologist does not want me taking Arimidex while on radiation, so I will come back to this thread in a couple months when I will go on it. Thanks for your encouragement and support!

  • Lowrider54
    Lowrider54 Member Posts: 333
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    Here is a link to the bcmets.org site listing the treatments for mets.  You will find aredia. Hope this helps.  It is a very helpful site as well for other stuff.  Between this one and that, it is what helped me cope with the new journey I have found myself on.

    http://advancedbc.org/content/treatments-common-use-metastatic-breast-cancer

    Direct to Aredia link   http://chemocare.com/bio/aredia.asp

    Hugs....LowRider

  • Grayt
    Grayt Member Posts: 32
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    Thanks for the new topic thread!  Beginning lymphedema therapy AND Arimidex Monday.  Interestingly (or not) one year to the date from the mammogram that started this whole nightmare.