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For Arimidex (Anastrozole) users, new, past, and ongoing

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Comments

  • ruthbru
    ruthbru Member Posts: 47,693

    Jane, you truly might be just fine. People who post often, quite naturally, are people who are having more problems. Most of the other people are just off living their lives. I was a little 'flashy' at the start, but managed with fans and changing my wardrobe to layers I could take off and put on (and no turtlenecks!). I also was a little creaky, but as someone advised me, I just kept moving and that worked out too. Keep active, keep busy, try not to make cancer related things (including Arimidex) the center of your thoughts or life.

  • proudtospin
    proudtospin Member Posts: 4,671

    I have made it to 4 1/2 years before yelling uncle, no pain just weakness

    not sure what I will do now, 2 week vacation and then see

  • ruthbru
    ruthbru Member Posts: 47,693

    Have you checked out other things that could cause the weakness? It doesn't sound like an Arimidex related thing to me.

  • proudtospin
    proudtospin Member Posts: 4,671

    I have been reseaching other causes of weekness in legs, but it is a listed side effect so I am hoping to see at least some dif in the two weeks I am off it

    understand, I go to the gym 4 times a week, do strength training, treadmill and spend over  2 hours on weekends, about an hour twice a week after work so if anything, I should be stronger not weaker

    got to search out all options and since I have a tendency to have reactions to lots of meds...this is on the list

  • ruthbru
    ruthbru Member Posts: 47,693

    true...

  • proudtospin
    proudtospin Member Posts: 4,671

    I am alergic to so many dang OTC meds (like aspirin, motrin, benedryl....) that I do not think it much of a stretch for me to have a reaction here

    but hoping, I wanna do spin again! and be able to get up and move after done! like I used to!

  • ruthbru
    ruthbru Member Posts: 47,693

    Hope you can get to the bottom of it ASAP!

  • proudtospin
    proudtospin Member Posts: 4,671

    thanks, likely will post what I end up with but I wad DCIS to start and if I had started at a dif point, I might not now be looking to bail 5 months early

    I live near NYC so have a really good hospital and docs and comfortable talking to them on choices

  • ClaudiaMetz
    ClaudiaMetz Member Posts: 136

    Thanks Ruth I will look at that link.

  • lago
    lago Member Posts: 11,653

    justmejanis sorry I've been a bit MIA. Very busy with work and still finishing up some freelance. I'm feeling fine. Next month makes 3 years since my diagnosis so I'm back to normal. Which special shampoo? Did I send you info on the stuff all the women stylists recommend where I get my hair done? BTW be sure you don't have a thyroid issue.

    mybee333 don't be insulted if someone suggests you need a psychiatrist. It doesn't mean you are nuts. The psychiatrist, if s/he is any good will know if your issue is related to lack of estrogen what to do or will let you know that there is not much that can be done chemically but may have some exercises that will help you get through the mood swings.

    "Compliance" I have never missed a day but one time I took it twice. I thought it was the next day so when I looked at my pill container that afternoon I saw that day was still full. I started to take my pills, the first being anastrozole, then I remembered it was today not tomorrow Tongue Out But if compliance means taking it for 10 years I have a feeling I'm not so sure I'm going to do that. I'm almost 2.5  years

    But Holy Price Hike! I went to pick up my pills at   and they told me the price went up. I used to not go through my insurance because it was cheaper. 3 months ago I was paying $43 for 3 months. Now it's up to at least $55 a month. At that point I said check the insurance price. Insurance price went down to $15 a month but I can only get a month supply at a time.

    Pbrain I didn't start to have some SE till 3 months. I did go into chemopause but the night flashes were very minor. I'm not sure I even have them now on Anastrozole. I was stiffer for a while but now that I work out including strength training I'm not that bad at all. My hairline has started to recede a little but still looks better than before chemo. My eyebrows have thinned but that too might just be menopause. I do find that I am not as strong/can't build more muscle and tend to put on weight in the middle even though the scale isn't that different. This could just be menopause and a little Anastrozole too. Not everyone has huge problems with it. I do think I would feel better if off it but I really don't feel so bad.

    proudtospin keep us posted

  • Timbuktu
    Timbuktu Member Posts: 1,423

    According to my onco Arrimidex is still a 5 year plan,  The Tamoxifin findings don't effect Arrimidex.  At least for now...

  • lago
    lago Member Posts: 11,653

    Timbuktu My NP also says it's still 5 years but be prepared for 10 years because the studies are pointing that way. I have not questioned my onc about it because I'm only at the 2.5 year mark.

  • mybee333
    mybee333 Member Posts: 672

    My first oncologist was at a very large research hospital/university. He was part of the team that developed the parameters, etc. for oncotype testing. In my first meeting with him he said that while the current recommendations were for five years, they're finding that after 5 years, women are taken off their AI and they get cancer anyway. So now he was involved in research to see how 10 yrs works but weighing it against the long term potential risks of permanent damage from side effects from taking the medication that long and if it outweighed the benefits of prolonging life. That was my introduction to the AIs. Oh and he also said that he probably wouldn't be my doctor anymore when the results were in and I needed to make my own decision at the 5 year point because he planned to be retired. He seemed to be a very nice man who was a doctor as well as a researcher and spoke simply and truthfully. He also said that the long term side effects of these drugs are unknown as they haven't been around long enough but that the AI was my best defense, my only defense, really, as they shrink and starve any potentially remaining cancer cells. As I mentioned in an earlier post, I was enrolled in a research study there too, involving measuring loss of muscle strength/grip as well as subjective experiences of muscle and joint pain. I liked the doctor but left the center as it was 1 1/2 hrs from my house and I didn't have enough sick days left to make my appts. at a facility so far away. The whole conversation was very unsettling to say the least and I have been scared ever since.

  • Timbuktu
    Timbuktu Member Posts: 1,423

    To tell the truth, logcally, it made sense to me that 10 years would be better than 5.  My mother's cancer returned after 15 years.  And i have a friend who has been on Tamoxifin for 20 years, just on the judgment of her onco,  My onco is very dogmatic.  I don't like that.

  • Timbuktu
    Timbuktu Member Posts: 1,423

    That dr sounds good to me.  They don't have all of the answers and I don't like a dr who thinks they do,

    I suppose our best hope is that in the intervening years a real cure is discovered and we can toss these pills,

  • mybee333
    mybee333 Member Posts: 672

    I didn't realize until I typed the above how much that conversation impacted me. Scared is not exactly a good starting point for your life and yet that is what sits with me as regards BC. I'll have to look at that some more. As a consequence I have never identified myself as a survivor at all but rather as someone who is waiting for a potential inevitable bad outcome of some kind. The statistics are actually quite good for a positive outcome. My 3rd MO said that for every year of life I gain a % pt for BC in my remaining breast. So if I live 20 more yrs. I have a 20% chance of BC in my left breast. She said the AI would reduce that risk for as long as I took it. I'm not taking one now.

  • mybee333
    mybee333 Member Posts: 672

    T. - Our posts crossed. I thought the same thing about the 20 yrs in the above scenario. Who knows where the science will be in 20 yrs. anyway. Things move so quickly now.

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793

    I think the issue with this whole discussion is that the incremental benefit isn't a linear curve, but rather one that starts out with a relatively high incremental benefit over the first two years, and then slowly approaches, but never quite reaches, zero.  (I looked up "exponential functions".) 

    The "helps most in the first 2 years" is very important, and something I noticed inadvertantly in a UK study.  I forgot what it was comparing, but the duration of AI time was 2 years, and a substantial benefit.  So if this observatin is corect, even doing the 5 years would be "extra insurance".

    I am not advocating stopping after 2 years, but helpful to know that a significant benefit is already achieved by that time. 

    Anyway, there does come a point where the incremental benefit would just not be worth continuing on the med for most patients.  I am making this up, but let's say that at 5 years, the incremental benefit would be to raise my chances of making 10 years disease free from 88% to 88.2%.  I don't think I would sign up.  But if it turns out to be from, say, 85% to 88%, I would need to consider it.

    Anyway, we just don't know at this point.  Which is because AIs are relatively new as medications.  But ever so glad we have that option. - Claire

  • mybee333
    mybee333 Member Posts: 672

    Good information. Great perspective. Positive in focus and I like that. :)

  • lago
    lago Member Posts: 11,653

    Claire I haven't read about any of the studies for AIs for 10 years but my understanding of 10 years of Tamoxifen is that the extra 5 years provides the most benefit starting the 10 years after treatment not the 5-10 years after treatment. If that is true for AIs I can't  help but wonder if its more beneficial for those who have slow to moderate grade (grade 1-2) cancers than those who have fast grade 3. These are the type of questions I will ask my onc if and when the recommendation moves to 10 years instead of 5.

  • Timbuktu
    Timbuktu Member Posts: 1,423

    Thanks for that Claire.  The wisdom of the group is great.

    I don't think there can be statistics for 10 years because the drug has not been around that long.  That's why my onco wanted me to have chemo although my second, third and fourth opinions all said no chemo.  She said at the time (two years ago) the drugs have only been around for 6 years so there's no way to know what will happen down the line.  Tamoxifin has been around for 30 years and they just came up with the findings that 10 years are better than 5,

    The last utube I saw, put out by Sloan, says that there is an excellent chance that in 10 years breast cancer will no longer be a problem.  Let's hope and pray he's correct!

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793

    Because I am on the board (and Finance Committee chair) of the Chris Elliott Fund, an organization providing patient support to brain tumor patients, I keep reasonably current on the work being done in the genetics/microbiology arena.  So I would agree that in 10-15 years, most cancers will be curable.  And I think the this will happen because of a few key discoveries.  The genome sequencing was huge, and so is BIG DATA as we have the ability to crunch large amounts of information and see patterns as never before.

    I find all of this very exciting.  However, we are still in the world of 3rd generation chemo, herceptin, and anti-hormonals as the best options for most of us.

    My intermediate dream is for those diagnosed with primary brain tumors to have the same chance of survival as I had....that is, that most be able to look forward to long and healthy lives, vs something like a 4% survival rate for Glioblastoma.  That is why I am doing work in that arena.  I have a friend who had a pancreatic cancer diagnosis 2 years ago who I think will make it.

    Really looking forward to a world where genetic testing is part of the initial diagmostics and then a custom genomic-based therapy based on the individual characteristics of everyone's cancer.  That is where we are headed, and I think that ten years from now is a reasonable timeline to see this start to come together.

    Seattle is one of the centers for all this research, and one of the reasons I find it so exciting to live.  Just think....just last Sunday, I cycled by labs that just could hold the cure to all our futures! - Claire

  • Timbuktu
    Timbuktu Member Posts: 1,423

    Claire, how wonderful that you are involved in this work!  And so glad to hear that you are so hopeful too.

    I have a friend who was diagnosed with a brain tumor about 3 or 4 years ago,  He was "given" 6 months.  He's still working and raising his family and doing well. We just went to dinner together.  No one knows the future but there is much reason to be optimistic!  Who knows?  Maybe in our lifetimes we'll look back on these treatments as the dark ages.

  • kjiberty
    kjiberty Member Posts: 687

    Claire, thank you for your work!  I truly hope you are correct that cancer will be a thing of the past and there are cures.  It strikes too many people too young.  

    Lago:  You said that perhaps your risks for BC were higher as you live in the city  I feel the same way living out the country? Pesticides/fertilizers from farms?  Damned it you do, damned if you don't.  

    Ruth:  Love your recipe.

    My SE's, for me, are manageable. I do wake up with "claw fingers" sometimes, my knees could use an oil can lube on a daily basis.  My hair is still very thick, fortunately.  Hot flashes occur about once a day around 8:45 p.m (!).  My biggest challege has been weight gain.  I exercise, lift weights, do yoga 4-6 times a week but still am gaining weight.  It's very frustrating  I just have to consider the alternative, so all is good.

  • ruthbru
    ruthbru Member Posts: 47,693

    Here is a unscientific theory that I thought of myself: most ladies who are taking Tamoxifin are premenosaual, if after 5 years they are still in that stage of life....well, once they quit the drug, their ovaries will start pumping out the estrogen again. Since we are all post-menopausal, and as estrogen production declines with age....maybe after 5 years there's not much estrogen left to supress. Does that make any sense?

  • flannelette
    flannelette Member Posts: 398

    Just saying hi. I too am 65 going on 85, after 4 & 1/2 yrs on arimidex. Stiff, creaky, had carpal tunnel after about 2 yrs, that went away, my hair's about 1/2 as thick as it used to be - never shed, just didn't grow, though right after chemo I had thick, curly hair, what I wanted all my life.......that went away, too. Am starting to catch up on this topic as my 5 yrs is up in Jan. Must say I've fallen off the calcium tablets but am thinking I'd like, very soon, to buy a nice big bag of prunes. One thing I can say is great and that is my skin...I've long since stopped using all mass-produced face creams, now only use virgin coconut oil or shea butter. I'm baaad, don't exercise, but do go up & downstairs 45 times a day...seeing my onc next month or so will be interesting to hear about latest studies on arimidex....

  • proudtospin
    proudtospin Member Posts: 4,671

    flannel, as a fan of prunes myself...they package them in air tight contaniners now and they stay lovely!  love my prunes!

  • Pbrain
    Pbrain Member Posts: 773

    Thanks Moon, Lago and Ruth.  I really am hoping I'm not going to experience too much with this drug.  Besides my first chemo (and maybe the subsequent 12 taxols) I'm usually a side-effect-free person.  Fingers crossed!

    Claire, I do hope we can cure cancers of all sorts in 10 years, but I work in the pharmaceutical industry and getting anything through the FDA is onerous!  So maybe we have the technology to do it in 10 years, and we can get it out there as RUO or IUO, but being available to the general populous...maybe if we go to the EU...

    Can you tell the FDA drives me nuts in my job?  Yell

  • dwill
    dwill Member Posts: 248

    GmaFoley, I am on Arimidex (Anastrozole) and since I have taken it for about 2 months ,  I have had hot flashes, night sweats, but my biggest concern is weight gain.  My face have rounded out and it looks puffy.  I hate to see myself in the mirror.  I can deal with the hot flashes and all--although it can be embarrashing when others are around and I need to adjust the air just for me--but I dislike the weight gain.  I don't know how much weight it is because I can't make myself get on the scale--but I see my face and it depresses me.  I know I am going to have to make some changes in my diet and excercise to compensate.  This sound vain but its really, really upsetting to know I am one of the people are having these SE and the weight gain is the most upsetting..

  • rcl
    rcl Member Posts: 1

    Just putting in my 2 cents regarding these drugs.  I was put on Aromasin after approx 3.5 years on Tamoxifen.  I really had no side effects from the Tamoxifen except for weight gain.  When I started the Aromasin I was fine for a few months and then started having awful back and joint pain.  My fingers would even lock up at times.  Was sent for scans and all my onc said was that there was degeneration of the discs in my back (which I had never had prior to Aromasin).  He attributed my "back pain issues" to getting older (late 40's).  Gradually, the back pain became intolerable most of the time but I stuck it out for abt another 1.5 years.  Finally, the onc took me off as I was in constant pain.  We decided to do no more hormonal therapy, even though I should have been on Tamoxifen or an AL for at least 5 years more.  It was a mutual decision that the onc was not happy with it.  This November, will be 10 years cancer free but I am left with horrible "degenerative disc disease pain".    When I initially started questioning my back issues and the Aromasin, he would not acknowledge that one had anything to do with the other.   Well, he has since acknowledged that perhaps the Aromasin could have aggravated an underlying back issue.  I disagree as I know my body and I truly believe the Aromasin caused my discs to degenerate rapidly.  Again, just putting in my own experience with these drugs.  But I do believe, at least for myself that the Tamoxifen would have been a better avenue than to do the switch to the Aromasin for which I regret.  It was a fairly new drug at the time and I was just following doc's orders.  If I had to do over again, I would not take any drug in the Armidex/Aromasin class.  Just my personal experience as I am left with severe disc disease now.  Wonder how many others out there in this community have had a similar experience?

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