Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Arimidex

1109110112114115118

Comments

  • KKing
    KKing Member Posts: 17
    edited January 2011

    Just wanted to ask a question to all of you.  Is your bone density showing signs of osteopenia?? If so, are you taking ACtonel...I am to start taking it and have been reading about it,  seems there are drastic side effects.   Are any of you taking this, and if so what do you think.  Anything you can tell me would be appreciated.

  • otter
    otter Member Posts: 757
    edited January 2011

    notself, where did you read that "Arimidex suppresses the thyroid"? 

    All the pharmacology studies I've seen reported that Arimidex (anastrozole) is a very specific inhibitor that acts only on the enzyme "aromatase".  It does not affect the function of other endocrine organs, like the thyroid, and it does not alter the levels of other non-gonadal hormones.

    If you have evidence to the contrary (i.e., a scientific study that shows "suppression of the thyroid" by anastrozle), that would be very important for us to know about.

    OTOH, since alopecia or hair thinning can occur because of thyroid dysfunction (whatever its cause), it is important for those of us with hair-growth problems to have our thyroid function checked.  Apparently, hypothyroidism is very common among middle-aged and older women (especially in its subclinical form). 

    paamboli, I also have Hashimoto's and have been taking Synthroid for almost 11 years (way before any encounter with BC).  My Synthroid dose has been adjusted (decreased) 2 or 3 times in the past few years, but everything I've read and have been told by endocrine docs indicated that a reduced need for thyroxine supplement is common with menopause and aging.

    My hair -- which fell out completely during chemo -- was growing back nicely at first, but became noticeably thinner after a few months on Arimidex.  I've now been on Arimidex/anastrozole for 2-1/2 years, and there is no doubt that my scalp hair is thinner than it was pre-diagnosis.  My onco said that's a known SE of Arimidex. Anyone who's visited a retirement center lately would probably know that, too, since many of the elderly women have very thin hair.

    It's always one more thing, yes?

    otter

  • otter
    otter Member Posts: 757
    edited January 2011

    Sorry, KKing ... I meant to answer your question too.

    I was already mildly osteopenic when I began taking Arimidex in June '08.  My onco was not concerned about it, though.  She said she thought the benefits of an aromatase inhibitor outweighed concerns about bone loss, unless the bone loss became severe.  She is monitoring my bone density and will not treat it with a bisphosphonate unless I actually lose bone on Arimidex and develop osteoporosis.  She did refer me to an osteoporosis specialist because of a different issue, and that doc also takes a conservative approach about treating osteoporosis.  In the meantime, after 2 years on Arimidex, a follow-up DEXA scan showed that my bone density had not changed at all.

    "Actonel" is a bisphosphonate (risedronate):  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000178.  It has the SE's that are characteristic of the oral bisphosphonates.  I can understand why you are concerned about that; I was, too.  So, I'm grateful that my onco and osteo docs are taking a wait-and-see approach.  (I hope I don't regret that at some point.)

    otter

  • ruthbru
    ruthbru Member Posts: 47,794
    edited January 2011

    Do lots of 'pounding' weight bearing exercises; walking, running, dancing, weights....swimming & biking don't count for bone building. Eat calcium rich food, take calcium suppliments with Vitamin D. I wouldn't add a biohosphonate unless I had seriously done all that I still showed serious bone loss. (That being said, I do a yearly DEXA to closely monitor what is going on with the bones.)

  • paamboli
    paamboli Member Posts: 43
    edited January 2011

    I am in a serious grouse about having my hair get crummy due to taking Arimidex since October. I have used Rogaine for years, to counteract a genetic predisposition to thinning hair, ( both my mother and her sister had wigs at 40 ), and managed to keep things looking really good, until now...Rogaine does not do squat when faced with the power of A. Does anyone know of supplements that might be helpful? Does the hair loss slow down after awhile? Not according to otter...I guess I'll try burning incense and beef up my beanie collection. Sigh.

    paamboli

  • suzie14
    suzie14 Member Posts: 208
    edited January 2011

    Paamboli...I use Biotin 5000mcg for my hair thinning problem from arimidex. I take 15,000mcg. There are some other supplements out there, sorry, I don't remember the name of it, but for me it was a little bit too much for my pocket book. The Biotin seems to be helping me.

    gentle hugs ~ suzie

  • paamboli
    paamboli Member Posts: 43
    edited January 2011

    Thanks Suzie- I'll try the biotin, and think about taking up trance dancing...

    paamboli

  • otter
    otter Member Posts: 757
    edited January 2011

    paamboli, my hair loss has stabilized.  I'm not losing any more hair; It isn't getting any thinner.  I think the thinning maxed out after maybe 6 months on Arimidex.  It's about as thick now as it was then.  Also, I can tell that I'm not losing any more hairs in the shower or my comb than I did pre-chemo. I suspect that means I just have fewer active hair follicles now, than I used to have -- fewer hair shafts per square inch of scalp.

    I do have some thinning and receding at my temples, but that began well before my BC diagnosis and really hasn't progressed very much.  That's just a combination of age (I'm 58 now), natural menopause, genetics (my mom's hair is thin), and probably a bit of Arimidex effect.

    It sux, but my new standard is chemo:  it's not as bad as being chemo'ed.

    otter

  • ananda8
    ananda8 Member Posts: 1,418
    edited January 2011

    otter,

    My surgeon told me that Arimidex suppresses the thryroid.  She was the one who suggested that I have a full thyroid panel done.  I have no idea where she got the information.

  • Dabulls23
    Dabulls23 Member Posts: 7
    edited January 2011

    I was on Arimidex from Nov 5th until Dec 21 2011..Had tremendous SE...Heavyness on chest, short of breath, fatigue, exhaustion, joint and muscle pain and pull, dry eyes, edgy, anxiety, emotional, depression...I am too afraid of SEX as it was painful once during this time..A total positive person became a almost basket case that is how bad it was...Dec 18th my left leg got charlie horse which pulled my complete left side from calf all the way to upper neck-lower head area...Next day I started having floaters and headach..I ended up in emergency where they did Cat scan and Ultrasound for leg-Doppler..I sent email to my Onco and his ofc called back to stop taking Arimidex...I have a FUP to see him Jan 28th..I was so scared that something bad was going to happen to me as I was so emotional ready to cry with lil things..All this started 2 wks after I had started on Arimidex..

    Hoping the next meds they put me on won't give me so strong SE...Weight gain is another SE with Radiation and Arimidex...

    I felt what kind of living is this where I feel like I was almost dead...Don't need to live long suffering..

    Armidex can kill me with Heart attack, stroke, High BP, cholesterol and not taking it will kill me with cancer some day...I think cancer has less chance of killing me in next 5 yrs but Arimidex has more chances of killing me within that time...My personal and honest opinion... 

  • paamboli
    paamboli Member Posts: 43
    edited January 2011

    otter-

    Thanks for the hope. At 71, I do not expect the buoyant tresses of my youth, but as my hair has not gone gray, my scalp makes a nasty contrast to brown hair. With luck, I'll have the same slow-down experience at 6 months.

    paamboli

  • patoo
    patoo Member Posts: 5,243
    edited January 2011

    Dabulls23, thanks for sharing.  Those SE's must have been extremely frightening and I'm glad your onco had you stop.   Too bad they wait so long to get you in for a new appt to discuss another.  We can all understand your feelings as this med affects each of us differently.  Please keep us updated on what will be the next steps.

    HUGS.

  • Dabulls23
    Dabulls23 Member Posts: 7
    edited January 2011

    THanks Patoo....Hugz right back at ya...

    I wanted to include my Onco DX score was 14...Now with taking Arimidex or any meds i want to know by what % does it improve my reoccurance chance? It it very low like 1 or 2% than I may consider not taking it at all..I want to discuss this with my Onco..

    Take care and god bless!!

  • wenweb
    wenweb Member Posts: 471
    edited January 2011

    Dabulls23:  I have the same DX as you and also the same Onco DX score.  My onc told me that my chance for recurrence was 9% with Arimidex and doubled without.  The Onco DX numbers include the fact that a medication is taken.  I believe the study was with Tamoxifen, so perhaps the numbers improve with an AI.

    wendy 

  • ruthbru
    ruthbru Member Posts: 47,794
    edited January 2011

    If you are estrogen positive, an anti-hormonal is your BIGGEST gun against recurrence. Chemo lowered by chances by 20%, arimidex by 40%!!!

  • Lovelyface
    Lovelyface Member Posts: 563
    edited January 2011

    Ladies, I need help please.  I am actually a triple negative.  Less than 1% positive with estrogen and 2% positive with progesterone.  My Med. Onc. wants to put me on aridimex and shockingly on Zometa (I think this is given via infusion).  He gave me a CD about Femara, in which he appears and says that he had not accepted any monies from any pharmeceutical company to appear on it.  Anyway, he says that Aridimex is similar to Femara and wants me to take it for 5 years.  But imagine me taking Zometa.  I have early stage BC, grade II, so I am shocked why he is trying to put me on such a drug which is given for bone metastasis.  And being only 2% positive for progesterone, I am not sure what to do.  Before my BC, I had had many problems which seemed to be coming from having no estrogen.  My blood estrogen was >20, where the normal range should have been >41.  No doctor seems to know how to interpret this when the blood test comes out this way for postmenopausal women.  My OB wanted to give me a HRT patch to use, but before I could decide, I got the BC diagnosis.  And now I am facing with this decision.  Should I take such a scary drug, or two scary drugs.  This med. onc. never gives you any information, i.e. my benefits for taking it, versus not taking it.  I really need to find a new Med. Onc.  What should I do?

  • wenweb
    wenweb Member Posts: 471
    edited January 2011

    Lovelyface:  Did you have a bone density test done?  It could be that your onc wants to use the Zometa due to osteopenia or osteoporosis.  The AI's (which include Femara, Arimidex, and Aromasin) can cause thinning of the bones.  Perhaps he wants to slow down or prevent further progression of this process.

  • Lovelyface
    Lovelyface Member Posts: 563
    edited January 2011

    My Med. onc. knows nothing about my medical history and has never asked me about anything, even if I did have any bone conditions, he wouldn't even know about it.  I don't have osteoporosis, never had any reason to do the bone density since I just finished menopause at age 51, and am now 53.  I don't have any history of bone thinning or anything like that.  Actually, I once paid for a bone density test at Longs where these medical people come and provide tests such as cholesterol, bone density etc.  One has to pay out of pocket for these tests.  I chose to do the bone density but later found out that they recommended those tests for women 65 and over.  My results was that mine was in the normal range for my age.  Anyway, the company returned my money telling me that yes, the test is administered to women over age 65.  I have no idea why my med. onc. is recommending aridimex and zometa to me. I think zometa is for his financial gain, as his oncology group is busy with infusions all day long.  Sorry, I am so venting right now.

  • pj12
    pj12 Member Posts: 18,108
    edited January 2011

    Lovelyface,

    I have read some discussion of giving zometa prophylactically to prevent mets to bones but it's mostly unproven and still being investigated.  I think. Are you at greater risk because you are triple negative? I don't know... just asking.  You might post on the Triple Neg thread and see is anyone there is being treated with zometa to prevent bone mets. 

    And a second opinion is always a good idea if you are uncomfortable with your treatment plan.

    Good luck.

    Pam 

  • Lovelyface
    Lovelyface Member Posts: 563
    edited January 2011

    Thanks Pam.  I will post there at TN where I go everyday.  As for the TN's in my support group, no one had any percentage of positive hormones so they haven't been prescribed any hormones.  I am scared to take Aridimex because I feel that it will lower my estrogen even more, and I honestly have felt and experienced that we get triple negative BC because we don't have any estrogen left.  I know that I have struggled with lack of estrogen since 2004, having had really frizzy hair, frequent urinations and knee pain. One very smart doctor had finally pointed it out to me, after I had done a million other tests.  I could try the Aridimex and leave if I have severe SE's, but for Zometa, I am not sure.  I am one of those people who has never ever taken prescription medications and now I am faced with everything that is out there. I have gone thru chemo and now will have rads.

  • ruthbru
    ruthbru Member Posts: 47,794
    edited January 2011

    You need to see a different oncologist, and quick. First, if you are triple negative, anti-hormonals will be of NO help to you. Second, the latest research is showing that Zometa does NOT lower recurrence rate in early stage BC, so if you do not have bone loss issues, there is NO reason to take it. !!!!!!!

  • Lovelyface
    Lovelyface Member Posts: 563
    edited January 2011

    ruthbru - thanks so much

    Ruthbru - do you think even with 2% positive progesterone, the anti-hormonals doesn't help?  Where can I get more opinions, is there any literature that you know about?

  • ruthbru
    ruthbru Member Posts: 47,794
    edited January 2011
    The progesterone doesn't play any part at all ( I'm progesterone negative), it's the estrogen that is the key to anti-hormonals. Go to the home page of BCO and scroll around at their topics. They have tons of research in every area. Thank goodness you are looking out for yourself!
  • wenweb
    wenweb Member Posts: 471
    edited January 2011

    Question for anyone out there that gets their Arimidex through mail order and lives in a state that has winter.  I just received a new order and I am sure that it was sitting in the cold in my mailbox for at least 2 hours if not more.  I do not think this even takes into consideration the way it traveled via the good old US mail.  I'm thinking that it's totally possible that it could have lost it's potency. And how would I ever know?

    I posed this question to the pharmacy when I ordered it and was told that there are no US regulations for how something needs to be shipped unless it specifically needs to be kept cold, not warm.

    I'm concerned.  Does anyone have an opinion?

    Thanks 

  • suzie14
    suzie14 Member Posts: 208
    edited January 2011

    I really don't know for sure, wenewb, but my opinion would be that the pills will be okay.

    Hope you get a more scientific opinion.

    Could you pose the question to the arimidex folks online?

    suzie

  • patoo
    patoo Member Posts: 5,243
    edited January 2011

    I'm in a cold climate and I also don't know the answer to that but think they would be okay.  Seems to me that if the cold were to affect the potency it would have to be in the cold way far longer than a few hours.  Of course it may be cold also enroute, but then it would be in and out of the cold, from warehouse to truck to post office to your mailbox.   I think like the pharmacy said, if it needed to be kept at a certain temp it would be specifically noted on the label/box or they would have to ship it in a climate controlled package.  I would worry more if it were a liquid maybe.

  • wenweb
    wenweb Member Posts: 471
    edited January 2011

    All medications have the range of what temp is should be maintained at.  It's always within a range that's (usually) comfortable for humans.  Freezing isn't one of them.  I personally think that when medication leaves a mail order pharmacy that it is pretty much outside until it gets into the hands of the owner.  

    Anyway, that's for your replies...that was my rant for today!! 

  • otter
    otter Member Posts: 757
    edited January 2011

    wenweb, since Arimidex isn't an enzyme or a hormone, it's possible that the chemical is pretty stable, at cold temperatures at least.  But, if I were you, I would contact AstraZeneca (or whatever pharmaceutical company makes the version you are taking), and ask them.

    FWIW, this is what the Arimidex "prescribing information" (a.k.a. package label) says about storage conditions at AstraZeneca's website http://www.inyourcorner.com/:

    "Storage:  Store at controlled room temperature, 20-25˚C (68-77˚F) [see USP]."

    Sixty-eight degrees?  It gets a lot colder than that in my house in the winter.

    otter

  • wenweb
    wenweb Member Posts: 471
    edited January 2011

    otter

    And it gets warmer in my house than 77 in the summer.  That's a very small range.  This is why it makes me nervous.  I am sure that it was at freezing or below for longer than the time it was in my mailbox.  

    I know that I am not to only one who receives mail order drugs that must travel in the winter.  I did go through this with another medication though.  Called the manufacturer, was told what temp it needed to be maintained at, and in the end they recommended that I not use the drug.  I called the pharmacy and relayed this information.  They agreed to resend the drug via overnight at no extra charge to me.  Guess what they did?  They overnighted it via UPS on a Friday.  UPS does not have Sat deliveries, so I didn't receive it until Monday. I'm guessing that it was outside of the recommended control temperatures for the entire weekend including Monday since I didn't receive it until the end of the day.

    I will be able to tell if the first drug I received isn't working, but there would be no way to tell if the Arimidex isn't doing what it's supposed to be doing.

    I slept well, but I'm still ranting :>)  Sorry everyone. 

  • suzie14
    suzie14 Member Posts: 208
    edited January 2011
    wenweb, you have a right to rant, and I am glad you slept well! I now have to do the mail-order thing for some of my meds which I do not like to do. I will take your "rant" and use it to the max, believe me!!!! Thank you for the idea!  suzie