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Arimidex

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Comments

  • jakhope
    jakhope Member Posts: 16
    edited June 2010

    Hi there, I have to tell you I got those tone-ups shoes by skechers and my legs and knees are feeling so much better. I am wearing them ALL the time and feel a huge difference. Thank you.

  • Julia257
    Julia257 Member Posts: 203
    edited June 2010

    Good Morning, I'll be starting 5 years of 1mg/day Arimidex on 6/16, I had my last AC 5/26.  I have OA in the hips and Osteopenia.  I know the overall big picture is to keep the beasties away and I'm very grateful and hope and pray it works for all of us.  But anticipating the se's and expense, is there any data or has anyone's onc suggested cutting that dosage, perhaps 1/2/day or 1 every other day?  Thank you.

    May I please join the A Team?  I'll hang some heavy bling and try to grow a mohawk.

  • pj12
    pj12 Member Posts: 18,108
    edited June 2010

    Jo,

    I've been wondering... do you get much natural sunshine? I mean HIGH NOON and no sunscreen. When all else fails, go to the source :-)

    pam 

  • jessamine
    jessamine Member Posts: 123
    edited June 2010

     julia- I had a conversation with my onc just the other day in which he said that if my side effect issues were too bad still after we tried everything else, he would suggest cutting the dose in half. I expressed the same reservations as Jo-5 brought up, and he said that (for me at least, having had the chemo) it would only slow things down, not work less well, and that the cells were going after with the A are slow growing so that wouldn't be an issue. He explaned that the chemo attacks the fastest growing cells in the tumor (or left in the body in the case of surgery first), and hopefully eliminates them, then the A is used to clean up the remaining slow growing cells. This made sense to me as I had a grade 3 tumor, had chemo first, and by the time I had surgery the path on that came back grade 2, apparently b/c the chemo had wiped out the grade 3 cells leaving only those behind.

    That said- you should really try everything else first probably, including aromasin, etc, if the A really does affect you too badly to take. And your situation may be different and that may not be an option for you.

    Also- I have only been on the A for a few weeks, so I don't know what will happen to me around the 3 month mark when the pain, etc, are really supposed to kick in, but I had really severe side effects almost immediately (terrible anxiety, depression, mood swings) (which according to my onc is common)- but they are already receding (according to my onc, also common). So whatever happens, try to ride it out, it doesn't necessarily mean it'll last for 5 years.

    ps re: expense- there are a lot of organizations that help low income women pay for A and the other AIs etc, and I am looking at all of them! If you (or anyone else) are having trouble, personal message me, I'll send you a list. If you all live in the US at least, others I don't know, but I guess you probably just have health care that doesn't suck so you don't need help!

  • MTG
    MTG Member Posts: 337
    edited June 2010
    otter wrote:

    MTG, how do you even find your laptop when it's buried underneath all that stuff???  :)

    Otter - I love the visual ! It's esp funny since my laptop is one of the few flat surfaces in my home that isn't covered with stuff !

    All - Have any of you ladies looked into and/or tried gelatin supplements for joint pain ?

    I remember "grown ups" talking about it helping hair and nails back when I was a kid, but there seems to be a lot of write ups about it helping joint pain, mostly in muscle magazines but if it works for them.... I haven't really found anything scientific other than one study at Ball State that was sponsored by the parent company of Knox Gelatin, which - surprise, surprise - makes gelatin supplements. But Knox isn't a fly by night company and their supplements followed after people were using ordinary knox gelatin for this purpose so I'm wondering....

    Here's what I've found so far:

    Gelatin for Joint Pain,  http://www.ehow.com/facts_5646487_gelatin-joint-pain.html

    Certo Home Remedy - Fruit Pectin - Gelatin Powders - Certo & Arthritis, http://arthritis.about.com/od/certo/Certo_Home_Remedy_Fruit_Pectin_Gelatin_Powders_Certo_Arthritis.htm

    Health Benefits of Gelatin, http://hubpages.com/hub/Health-Benefits-of-Gelatin

    Joint Pain Troubles: Joint Health and Supplements,    http://www.bodybuildingforyou.com/health-nutrition/joint-health-supplement-1.htm

  • jakhope
    jakhope Member Posts: 16
    edited June 2010

    My Dr told me that Arimidex works daily and on a short time basis. The levels drop quickly so not to miss a pill. I would not cut in half or  not take it daily because it is out of your system quickly. I have had cholesterol and trygliceride problems for years. The Vytorin has helped me and also fish oil  (Lovaza ). This combo has had the least effect on my liver. I am only on Arimidex for almost three months so I do not know how this is going to effect my numbers on my blood work. I still will not give up my red wine.

    J

  • pj12
    pj12 Member Posts: 18,108
    edited June 2010

    The half-life of Arimidex is 72 hours. I believe the dosage was tested from less than 1 mg/day up to 20 mg/day. 1 mg daily seemed to provide a stable, consistent level. My conclusion is that I should take one pill a day as close to the same time as i can to make it easier to remember but if I am late a few hours it will not endanger my life.

    pam 

  • Julia257
    Julia257 Member Posts: 203
    edited June 2010

    Thank you all for your sage advice, I appreciate it so much.  Thinking 1/day = 5 years then 1/2 would logically mean 10 whole years of prophylaxis... just me being delusional.  Wishing you all and myself the best possible journey and results on this A train.

  • patoo
    patoo Member Posts: 5,243
    edited June 2010

    Julia, 1/2 may also mean only 50 percent protection as well, or, what if it's not effective at all and you have no protection?  We each must weigh the pros and cons of our decisions but we want to do everything we possible can to keep this beast at bay.  My best to you on whatever you decide.

  • Julia257
    Julia257 Member Posts: 203
    edited June 2010

    Thank you patoo for your good wishes, you have such a kind saying as well.  My wish and prayer for your good health.

  • horsegal13
    horsegal13 Member Posts: 46
    edited June 2010

    I got my new Skecher's Shape Ups, now I need to start wearing them to work. Very comfy, but I have to get used to the feel of the soles. I sure hope they help my knees, they are killing me! Other than that and some hot flashes, I'm doing good on Arimidex so far!

  • NatureGrrl
    NatureGrrl Member Posts: 681
    edited June 2010

    I'm going totally off-topic here, but JO-5, you're in one of my favorite parts of the country -- that corner of Ohio where it starts to get hilly, you aren't too far from Lake Erie, lots of snow in winter but they do a great job keeping the roads open, and summers are bearable... plus my best friend lives in Cleveland.  I lived near Kirtland for a couple of years and loved it... I especially miss going to the lake and looking for beach glass, and walking in the woods any time of year.  I learned to snowshoe there.  Next time you're there, tell Erie I said hello!

    As for keeping things straight, I've been relying on my brain (OK, everyone, pick yourselves up off the floor as soon as you're done laughing), but lately I've noticed that I'm getting overloaded and I'm going to have to figure something else out.  I love computers and may end up going that route but there are some things that I still like paper for (I still use 3x5 cards for sorting ideas, as otter mentioned) and I suspect this is one of those times when I'll use paper.  I like the 3x5 card idea -- a little tab for each med and cards for each SE or other information.  At least, I think that's where I'll start... it's definitely going to require some organization!

    And oh, yes, I have nighttime and morning pills that I can't take within 4 hours of calcium, so I'm up to taking pills 3x a day, calcium and D3 in the middle of the day... and one of my morning pills, I'm supposed to take WITH food, and one withOUT, but that's just too much, I just take them together without food... for someone who didn't take anything a little over a year ago, this is frustrating!

  • painterly
    painterly Member Posts: 266
    edited June 2010

    Julia257

    Remember Arimidex is a one size fits all pill and we are not all one size. We may not need the prescribed dosage. I think it's wiser to be pro-active, read as much as you can and decide for yourself if you get to a stage where the SE's are intolerable. Also, the oncs don't test our hormone levels, if they did, they would realize not all women need the same dosage. Good luck and go with your own instinct.

  • balsie
    balsie Member Posts: 228
    edited June 2010

    I started taking my A at bedtime.  It may all be in my head but the SE's seem to be less.  I just keep moving through it....what else is a gal to do.   Hope you are all having a great night! 

    grace & peace & wisdom

    Balsie 

  • jessamine
    jessamine Member Posts: 123
    edited June 2010
    painterly- my onc checks hormone levels regularly
  • Julia257
    Julia257 Member Posts: 203
    edited June 2010

    Painterly, thank you for your good wishes and all the best to you too.  Also you bring up a good point...we come in a wide variety of sizes and weights.  Do they really know that 1mg/day is as good for someone at 250lbs as it is for someone at 150lbs?  If I may ask another question...when I asked my onc what followup should I expect from now on, he said blood tests every 3 months...was not specific.  Is every 3 months the usual timeframe and what blood tests should they do?  Thank you very much.

  • weety
    weety Member Posts: 378
    edited June 2010

    Yeah, I wonder about that one size fits all approach too.  Do you think it is more likely to depend on body weight. . . or on the amount of estrogen it needs to suppress?  I'm just wondering because I'm just barely over 100 pounds.  Seems weird that I was given a kid's dosage of zoloft, but the same dosage as women twice my size for an AI.

  • jessamine
    jessamine Member Posts: 123
    edited June 2010

    I brought this up with my onc this week, actually, and he said (I believe) something along the lines of what weety suggested- that it was the amount of estrogen not the weight of the person. To be honest I mostly absorbed the part where he said that even though I'm tiny it made sense to take the full dose and not the why as much.

    My onc also does an every three month follow up- I've still been seeing him more cause of problems, but soon we'll switch to that. I know he tests tumor markers and estrogen levels- other than that I don't know. Anyone else?

  • loulou40
    loulou40 Member Posts: 31
    edited June 2010

    My Onc checks my hormone and vit D levels every 3 months as I was pre menopausal prior to Chemo - I'm 39 and we need to make sure I'm still post menopausal, my blood levels indicate I will stay in menopause, (FSH rising)

    .
    My blood estrogen level has been  undetectable (below 3) for the past 6 moths, I am a small frame and thin. My Onc has never suggested lowering the dose, he says the low estrogen level are great for my BC, but not so good for my bones - on zometa for osteopenia.

    I tolerate the Arimidex well, no joint stiffness just get achy sore legs of an evening which over the counter analgesia fixes. The hot flahes are OK, no night sweats, so I guess I'm lucky.

  • Julia257
    Julia257 Member Posts: 203
    edited June 2010

    Yes that does seem strange to me weety.  Thank you for the info jessamine.  This is my second go around with bc, the first, 18 yrs ago...I've never had my estrogen level checked.  I googled fat and estrogen and there are many links including to this website...9/08 question, can you control estrogen levels by lowering body fat?  Answer, Dr Weiss..."After menopause most of the estrogen in your blood comes form a chemical process in your fat and muscle cells. (before menopause from the ovaries) The more fat the higher the estrogen level in your blood".  So then doesn't it follow that the amount of fat one totes would have a significant impact on the dosage of A?

  • painterly
    painterly Member Posts: 266
    edited June 2010

    Excellent comment Julia257.

    Last fall I attended a breast cancer lecture put on by the doctors at the breast clinic.

    They talked about diet and exercise as a preventative and also exercise to relieve joint pain from arimidex. After the talk, patients were invited to ask questions and talk about their experience. Two women stand out in my mind. One was a stocky sturdy woman and one was a slim woman. The stocky sturdy woman was involved in dragon boat racing and had no significant se from arimidex. The slim woman said she could hardly move from joint pain and asked how can she get relief from the joint pain from arimidex if she cannot even move to do even the slightest bit of exercise.

    One of the doctors responded to her comments. He said maybe arimidex is not for her as it is certainly not for everyone and that quality of life is very important.

    At the time of the lecture, I had only been on the drug for about a month without any noticeable SE (little did I know that 3 months later I would feel differently).

    I often think about the slim woman and expect that she gave up on the drug (as 34% of patients cannot tolerate it due to the extreme pain involved).

    A point I would like to make is: instead of giving up the drug why cannot we balance quality of life and the drug by only taking 1/2 or even less? As we are not one size women.

    Women should learn to be proactive and have their hormones tested. My breast clinic does not test hormone levels and the tests I get there are for blood pressure, red/white blood count and cholesterol level etc. I asked to have my vit. D checked. It was in the normal range. I asked to have my hormones tested: answer was that they do not check hormones. So how can the docs give the same pill to all women without knowing their hormone levels. This really baffles me.

    This is why I believe women should be proactive and have their hormones tested. I finally had mine tested somewhere else and discovered I was in the good range level of around 3. So it is up to me to keep it there.

    So maybe some women can stay at this level on only 1/2 a pill and balance quality of life with the drug. I have read on these threads that some women just gave up on the drug which is a huge pity unless they have found an alternative way of keeping their hormone level down in the safe zone.

    I saw Dr. Northrup on PBS last week. She made comments about how patients often speak of their breasts as being "looked after" by such and such a breast clinic or hospital. So they leave their breasts (metaphorically speaking) at this place and don't give them another thought. Dr. Northrup's belief is that women's breasts are the individual's responsibility and that you should be looking after them and not just relying on the onc. at your respective clinic. I was very impressed with her comments.

    So women: be proactive and be informed and make decisions which are right for you.

    Glenis

  • weety
    weety Member Posts: 378
    edited June 2010

    I had my estrogen levels checked right before I started the AI (only been on it for a week).  But here's the kicker. . . the test showed only that my level was <12.  How is that for an answer?  I asked if there was a more specific test, but was told that's what they do at Kaiser.  How am I supposed to know if I'm at 11 or 2?  That would make a HUGE difference on whether or not I stayed on the AI if I happen to be one of the ones who get the bad side effects.  Ob-gyn seems to question my need of an AI since I had a hysterectomy/oopherectomy and have little fat to produce peripheral estrogen.  But. . . onc is insistent. 

  • patoo
    patoo Member Posts: 5,243
    edited June 2010

    Julia, I just moved to a 4-month schedule with my med onc after one year of every three months.  He says after another year of all clear results we can go to a 6 month schedule which we would pobably stay on until the end of the 5 years on Arimidex.

    I just looked at my last lab report and don't know if hormone levels are checked.  There's nothing that says "estrogen" or "progesterone" - but then they don't really expect lay persons to read them.  Could it be labelled something else, or is he just not checking it?  Anyone know?

  • Julia257
    Julia257 Member Posts: 203
    edited June 2010

    I promise you, it will be my mission to find out why it is that it is 1mg for all.  There must be a reasonable explanation.  Surely the professionals involved and the Arimidex trials took a person's bmi into consideration.  On another matter I asked my CVS pharmacist to crosscheck A for any interaction with my multitude of supplements (mostly for OA) that I took before chemo.  The report, almost indecipherable, said there is an interaction with almost everything on the list.  But here's the thing, this report doesn't reflect double blind studies or anything remotely scientific.  Supplements are the big mystery items in the sky, unregulated, illusive, who know what we're taking and what interactions might occur.  In another forum it was encouraging to find out that someone was going on 8 years on Arimidex, that the 5 years was not written in stone.  Well here goes...it's day 1 for me on this A thing and I hope and pray we all have the best possible results and the best of good health. 

    Also thank you Glenis for a very interesting post on the lecture, the two ladies, and Dr. Northrup.  And I totally agree, it is essential that we are proactive in all things related to our health.  And thank you Weety and Patoo for the information.

  • Enjoyful
    Enjoyful Member Posts: 278
    edited June 2010

    Is anybody "twitchy" on Arimidex?  I've been on it for three weeks now and have developed facial tics and muscle twitches in other parts of my body, in addition to the usual joint pain and lack of energy.

  • pj12
    pj12 Member Posts: 18,108
    edited June 2010

    I am soooooooo glad to see this mentioned but sorry you are experiencing it. I had a very minor familial tremor before BC. It is so much worse now! Don't know if it is stress or Arirmidex SE. My PCP wants me to go to a neurologist but I can't handle any more bad news. If I get nervous or upset I am all atremble. :-( No fun!

    pam 

  • Enjoyful
    Enjoyful Member Posts: 278
    edited June 2010

    Yep, that and restless legs.  Sometimes I think I pedal miles on my imaginary bed-bicycle every night before I fall asleep. 

    This is some crazy medication.  My ob/gyn suggested I stop taking it, but since I'm stage IV and don't want chemo AGAIN, well, I'll just have to suck it up I guess.

    pj, does your doctor say it's not related to Arimidex?  Is that why he wants you to see a neurologist?

  • pj12
    pj12 Member Posts: 18,108
    edited June 2010

    enjoyful,

    I sincerely do not believe my PCP knows anything about Arimidex SEs. He first said it was stress related and gave me an RX for xanax. It really did not help, might have made things worse. That's when he suggested a neurologist and I said wait and see.......

    Anything caffeine makes it worse. Chocolate too.  Being nervous makes it worse. Yes, it also manifests as restless leg too. Two glasses of wine really helps but  that is not a real solution.

    pam 

  • lakewoman
    lakewoman Member Posts: 221
    edited June 2010

    I'll drink to that pj!!!

    Well I am still eating sweets~ so much for my ' best laid plans'!  BUT I am exercising ~biked 2 miles today canoed twice this week and kayaked over weekend.And jetskied for an hour hahhahah.Well I have to hold on!!!! I do not have the fatigue at this time, though I can still do a power nap when I lie down to read,,HEY if my body needs it I take it!!! I sometimes think that fatigue rears it;s ugly head whereever and whenever ty to arimidex...TY for listening once again! Oh and speaking of sex hahahha I just ordered another tube of orgasmix...Hey turning 70 and B/C are not going to get in my way of life!

  • balsie
    balsie Member Posts: 228
    edited June 2010

    Lakewoman ~ you crack me up!  I love it... orgasmix...I love you attitude & and you sure made me smile tonight!

    good night all

    Balsie 

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