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Arimidex - Coping with the SE's

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Comments

  • pj12
    pj12 Member Posts: 18,108

    It's like the bald guys with the thick beards :-) Mother Nature has a perverse sense of humor!

    pam 

  • nativemainer
    nativemainer Member Posts: 7,944

    Ronna--many women benefit from switching AIs, and I hope Femara does better for you.  But I really would recommend asking for a Vit D level test.  I had a lot of aches and pains, mostly from arthritis I had before being diagnosed, that Arimidex made worse and all of them have all but disappeared with Vit D 3 supplementation.  With all the blood tests we have done, taking one more vial isn't much of a big deal. 

  • don23
    don23 Member Posts: 213

    How much Vitamin D is considered safe? My Vit d score came in at 34. My onco says that is normal but should I be doing anything to up it some more and if so how much do I have to take?

  • nativemainer
    nativemainer Member Posts: 7,944

    HOw much Vit D to take is a bit of a controversy.  My PCP prescribed 1000 mg per day.  I take OTC Vit D, and  based on the info from the Vit D thread

    (http://community.breastcancer.org/forum/79/topic/741446?page=37#idx_1085)

    that dose is probably too little for my initial level of 25.  I currently am taking 4,000 mg daily and will be having my levels checked again in a few months.  I take my Vit D as Vit D3 (Vit D2 is available but not as effective as it is not the active form) and, when I can find it, in a combiniation capsule of Omega 3 Fish Oil with Vit. D3.  I was skeptical at first, but after a month of supplementation and not doing anything else differently I noticed that my joints aches and stiffness were almost gone, and my depression was better.  Omega 3 is known to help with depression, and so is D3. There is a growing body of research linking low Vit D levels with the occurence, recurrence and spread of cancer.  

  • nativemainer
    nativemainer Member Posts: 7,944

    Forgot to say--target levels for Vit D3 in people with a cancer diagnosis is 60 to 100 ng/ml

  • don23
    don23 Member Posts: 213

    Thanks for  the info. NativeMainer!

  • Grayt
    Grayt Member Posts: 32

    Good luck to you, Ronna!

  • Grayt
    Grayt Member Posts: 32

    Don23, I had a dickens of a time bringing up my Vit D from 26.  I took 2,000iu/day from October through April which raised it only to 28.  Surgeon then upped the dosage to 6,000 and by June I was up to 60.2.  Now I don't take any at all except what's in my multi & calcium.  Good luck!

  • Grayt
    Grayt Member Posts: 32
    "Facial Hair After Chemo" is a topic thread on this site where I've read assuring information that the fuzzies will disappear on their own.  I completed chemo in late April and am definitely ready to leave behind all memories of it, including fuzz!  I really do believe it's lessening Cool
  • ronqt1
    ronqt1 Member Posts: 565

    Thank you guys, I will keep Vitamin D test in mind, my one year cancervisary is coming up soon. I will continue to view this wonderful thread. A silly question, who does Vitamin D test?

    I am now a Femara queen.

    Hugs,

  • pj12
    pj12 Member Posts: 18,108

    My medical oncologist ordered mine on a routine lab work order.

    pam 

  • Julia257
    Julia257 Member Posts: 203

    The subject is most definitely closed!  Thank you so much Grayt, for your responses and the encouraging news.  Best wishes!

  • Annabella58
    Annabella58 Member Posts: 916

    Mediagal:  Hi, yes, it's perfectly legal to get my drugs from a reputable canadian pharmacy...they are indeed constrained to follow the same FDA guidelines when they ship to the US; in fact, in Canada, they are very heavily fined if they do not.  I got the script from my oncologist and the reccomendation to use the canadian drug also as "long as it was not made in India and was not the generic".

    Now, as to the generics....in the U.S., they are not constrained to use the same "filler" or inert ingredients for generics.  Some people react to this.  The active ingredient can vary by small amounts.  Some folks do not care, but my doctor does.  I do.  Hence the name brand.

    However, even he felt safe enough to this very AM give me a script for generic arimidex, since I thought I'd ask again.  He's very conservative, even down to no to garlic supplements or fish oil caps.  Well, I call the pharmacy, only to find out they have had a massive recall of arimidex from India.  That almost all of it, ladies.  Check the list below that someone before me helpfully researched and posted that make generic arimidex.  Call your pharmacies and see if they've got the news.  My canadian pharmacy does not even have any generics that are not from India and they've already pulled it all.  I called and asked their head pharmacist there.

    No generics for me until they work these new bugs out! 

    I get my non generic arimidex from Canda, it is astra zeneca made in Canada.  Yes, it's still 500.00 but that is better than the 1,000.00 I was paying for a 90 days supply here.(300.00 before insurance ran out).

    I hate to spread bad news, but ladies, this is NEED TO KNOW stuff!! Call your oncs, your pharmacies and ask where they get their arimidex from!!! If it's from India, call your onc at once!  My pharmacy is a Rightair and the pharmacist was about to call me to tell me that she was in the act of pulling every generic arimidex she had from India off the shelves.

    The following generic Anastrozoles are made in INDIA (almost all of them)

    1.   Accord Healthcare Inc. imprint AHI

    2.   APP Pharmaceuticals, LLCDB02<ins cite="mailto:mtg" datetime="2010-07-13T20:00"></ins>

    3.   Ascend Laboratories, Llc AN;1<del cite="mailto:mtg" datetime="2010-07-13T19:58"></del>

    4.   Breckenridge Pharmaceutical, Inc. AN;1 - Made in India

    5.   Cadila Healthcare Limited - A7

    6.   Zydus Pharmaceuticals (USA) Inc. - A7

    7.   Dr. Reddy's Laboratories Limited RDY;1

    8.   Karalex Pharma, LLC 3RP;1

    9.   Pack Pharmaceuticals, LLCAN;1<ins cite="mailto:mtg" datetime="2010-07-13T20:59"></ins>

    10.  Three Rivers Pharmaceuticals, LLC 3RP;1

    The following do not state where they are manufactured, so I'm gonna assume...

    Cypress Pharmaceutical, Inc. 0376

    Mylan Pharmaceuticals Inc. M;34

    Roxane Laboratories, Inc. 54;077

    Sandoz Inc SZ;171 -

    There are only 2 generics that are clearly NOT made in India:

    Kremers Urban, LLC 71;KU -made in Ireland                                                     

    TEVA Pharmaceuticals USA Inc TEVA;A10 - made in Isreal.

    Since my onc has now OKd it (just not from India) I will post if I can find any from these companies or see if it can be ordered. 

    Good luck everyone.

  • sue-61
    sue-61 Member Posts: 262

    HI Annie, I posted on your new thread that I called Mylan and they said theirs is made in NJ.  I do have a supply of the generic but haven't started taking it yet as I have some Brand name left over: about  a week's worth.

    And thanks for bringing this to our attention. I really have no words for all of this.....except who can you trust today, anyway? 

    Sue 

  • carolehalston
    carolehalston Member Posts: 8,273

    I had fuzzy face before Arimidex.  Can't say whether it's worse after A.  I've heard the idea expressed that older post-menopausal women often don't suffer as much from A as younger women because we've been coping with estrogen deprivation for a while.  In my case I stopped HRT cold turkey, and do I ever miss it! 

    Check out the interesting new thread about generic Arimidex being recalled because it's made in India. 

  • Annabella58
    Annabella58 Member Posts: 916

    The interesting new thread is mine, same info as above.

    I certainly did not want anyone to get the arimidex that has been recalled!!! And my pharmacist is stressing that it is the Accord brand name (she did not know that at first, merely got a fax advising any and all generic arimidex by pulled if it came from India).  I'm someone that was scared of generics, got a  script for it today, only to find my pharmacist had just gotten this fax!

    Pharmacists advises that everyone call their own manufacturer of their generic and ask if it's affiliated with Accord.  Then call your onc on Tuesday and let them know.

    This is just disgusting....what people do for money, honestly.  And we are hostage to it.

  • pj12
    pj12 Member Posts: 18,108

    And why is it that when you're going someplace special and you have put on makeup(!) and fixed your hair (such as it is) and dressed up and you are in the car on your way and SUDDENLY there appears, on your chin, an inch long black hair that was not there an hour before?

    How can that be?

    pam 

  • Annabella58
    Annabella58 Member Posts: 916

    Hey gals:

    A wonderful lady just posted that she gets her generic arimidex at Costco and it's TEVA brand, made in Israel.  Which is NOT a suspect brand :)

    And she gets an awesome price, too!

    I bought this weird little hair trimmer thing called am emjoi.  It's like a little buzzy mini electric razor and it works like a charm on the Bagda hairs.

  • mac5
    mac5 Member Posts: 85

    Hello Ladies.

    Been gone for awhile.  This week has not gone as expected.  I was not accepted into the Drug Trial so I will not be taking Arimidex.  

    I have just started taking Abraxane by IV and I've been down graded to Stage III.  I will have 6 months of Chemo and Radiation.

    Thanks for letting me hang out with you for awhile.  All of you are awesome. It has been a great pleasure to chat.

    Hope you don't mind if I drop in and say Hi once and awhile.

    Beverly (mac5)

  • ruthbru
    ruthbru Member Posts: 47,791

    I bought a little personal razory thing for the cheek fuzz & have had my upper lip waxed a couple times. I'm afraid to use Nair, 'cause what if I fry my face?!!! I don't know if I am more hairy, or if it's just because you lose ALL your hair during chemo, so notice it more when it comes back. ???

  • Julia257
    Julia257 Member Posts: 203

    It would be my honor to pluck any one of you!  Thank you gorgeous ladies.  It's a great day when you don't feel alone.  Have a wonderful weekend!  Julia

  • NatureGrrl
    NatureGrrl Member Posts: 681

    I saw posts here yesterday about generic A being withdrawn.  I can't find anything about it online and now I see those posts appear to be withdrawn.  Anyone concerned, please check with your dr/pharmacist; I'm personally doubting that there's been a recall and I know my pharmacist hasn't heard anything.  If anyone does have information about the recall please post links and reasons for the recall.  Thanks!

  • nativemainer
    nativemainer Member Posts: 7,944

    I've just double checked the FDA list of recalls for 2010.  Arimidex in any form is not listed as being recalled. 

  • yogamom
    yogamom Member Posts: 6

    Hi LisaSec --  Just wanted to chime in as another who was premenopausal (though I'm 52 not 38) and couldn't take Tamoxifen, so am on monthly Zoladex injections (no problems with those) and A.  My SEs have been hot flashes at night and resulting lack of ability to sleep, as well as severe vaginal dryness/atrophy/whatever, for which I use a low dosage of Estrace twice a week.  I think there are plenty of us in your situation who were zapped into menopause!

  • BlessedOne2
    BlessedOne2 Member Posts: 17

    Has anyone experienced the metallic taste since starting A?   I didn't get this at all during my entire chemo treatment, so I'm wondering what's up with this now. Wanda 

  • nmi
    nmi Member Posts: 112

    Beverly, sorry to hear you had such a bad week. It's just not fair!!!  I want a redo!! (tantrum!!).

    We better hear from you often,  Don't want that to sound bossy, but just care about you.

  • suzieq60
    suzieq60 Member Posts: 1,422

    I am totally over the hot flushes - they seem to be getting worse. After ten weeks on Arimidex, I'm going to give in and ask the onc for something to help. With summer coming here, I won't be able to hack it.

    Has anyone had any numbness since starting A. I have started to get numb fingers on my left hand - not when I wake up, but during the day. I guess they match my numb toes on my left foot from the chemo :)

    Sue

  • ruthbru
    ruthbru Member Posts: 47,791
    Yes, waxing hurts. Like ripping off a piece of duct tape from your skin Surprised!! But you get a real smooth look and feel that lasts awhile.
  • gsg
    gsg Member Posts: 1,700

    It's been 4 years since chemo and 4 years on Arimidex for me and I STILL have the fuzzies.  I'm afraid, for me, they are here to stay.  I get waxed and am happy with the results.  Would love to have it permanently lasered, though.  I do get lots of hot flashes and accommodate them by having fans everywhere...in front of my bed, on my desk at work, bathroom, literally everywhere.  So far I'm thankful that hot flashes and the white fuzzies are the only things I've had to deal with post-bc.  I know many of you have really suffered with Arimidex SEs.

  • Marie2
    Marie2 Member Posts: 11

    Thank You, thank you, thank you. . I can't begin to thank you enough for this thread and how much it means to find so much useful information. I am addicted to reading all the posts and find them all very helpful in knowing what to expect and how to manage SE if they occur.

    I was recently diagnosed so everything is new to me. I don't even know what stage I have (although I believe it is I). I had a lumpectomy and surgeon said he got clean margins. Oncologist felt one side was too close (.1mm opposed to .3mm) and wanted me to go back in and have more removed. I had 2 sentinel nodes removed both negative and oncotype score of 17. When I discussed with surgeon about more tissue removal he again said all margins were clear , but if I want, he would go back and remove more, he added that since I would be having radiation he didn't feel it was necessary to remove any more clean tissue. I choose not to have any more surgery. I have been taking Anastrozole for a week now and have my 1st consultation with the radiologist next week. This thread has helped to alleviate some of my fears, although I am still nervous as to how my body will react to the radiation and also what SE's I am going to experience from the Anastrozole and when. I am hoping I can continue to work while I am doing radiation but I know I will just have to wait and see on that one. You can bet I will continue to read all the posts as I can see I will find the comfort and support I need right here with all of you. Thanks so much for all these helpful postings.