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Arimidex - Coping with the SE's

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Comments

  • aviva5675
    aviva5675 Member Posts: 836

    wait and see how it goes- Ive been on since Sept and really no side effects. Had hot flashes already so hard to say if those are worse or not...but overall no side effects for me...knock on wood...

  • sweetandspecial
    sweetandspecial Member Posts: 1,669

    Yes, checkers - now don't go borrowing trouble Smile.  There are lots and lots of women out there who are not troubled by SEs from this drug.  You don't see them here because they don't need the community support, they're just out there living their lives.  I personally had more SEs early on (first 6 months or so).  A couple of those issues resolved on their own and the rest are not interfering with my quality of life.   Wait and see what happens - you may be one of the lucky ones!

  • bondsy
    bondsy Member Posts: 49

    I haven't heard about the permanent hair loss! I'm getting ready to start on Arimidex this Sunday, as I will finish radiation in two days. Anyone out there having that SE of hair loss?

  • nativemainer
    nativemainer Member Posts: 7,923

    I took arimidex for almost 5 years (started out on tamoxifen).  I had some hair thinning at first that stopped after a few weeks, and may have been related to stress at the time and not just the arimidex.  I did get hot flashes, but they were only problematic at night and neurontin took care of it.  I did get joint stiffness and sometimes pain, but I found that taking an anti-allergy drug, loratadine, available over the counter,  helped a lot with that, as did keeping moving with walking.  It wasn't exactly fun, but it wasn't horrible, either.  

    I want to repeat what has all ready been said--not all women have side effects.  Many have none.  There are lots of things that can be done IF side effects crop up.  

  • kjiberty
    kjiberty Member Posts: 687

    CHeckers:  Please don't put the cart before the horse. I, too, heard many horror stories (one from one of my best friends), but you need to remember, everyone reacts differently. I was scared to death to start taking it, but I figured the sooner I took it, the sooner I would be done taking it. Yes, I had joint stiffness and yes, exercising is not my favorite thing to do.  However, what you need to do is figure out what you do like.  I have osteoporosis and know lack of exercise is not an option.  I lift weights 2's a week, and do yoga 2-4 times a week.  It has made a world of difference.  If there's a yoga studio near your home, try it.  I love it!  If I don't do it, I miss it.  Yes, I walk, but am a chit chatter, so it's my excuse (when the weather is good) to visit with my friends.  The joint pain started about 3 months in and ended about 9 months later.  Hot flashes are now fewer and far between. If you cannot manage your symptoms (many DO NOT have unmanageable symptoms), your MO will give you other choices.  Do not be afraid to take this drug.  You need to consider the alternative.  

  • checkers
    checkers Member Posts: 48

    Thank for all the positive remarks! 

    I know I'm being a bit silly with worrying about this but until I had cancer the sickest I've been in my life has been sinus or ear infections!  I'm 52 and before this, the only time I was hospitalized was when I was 2, for eye surgery and then when I gave birth to my 2 daughters.  I was even getting paid at the end of the year for not using all my sick days!  I guess I just a worrier.  I've been the care giver for my husband who has had his share of illnesses over the past 20 years including a liver transplant, ulcerative colitis, and cancer and he just takes everything in stride. His answer always is "You do what you have to do".  Wish I had that mentality. I tend to question everything!

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    Checkers, questioning is good! Don't do anything blindly. But on the other hand don't worry about things that may not happen. I've been on A for 18 months. At first I had Hot flashes. But what bothered me most were the Cold Waves. I just got teal cold and even sitting under a blanket with a hat on couldn't warm up. They last a bit longer than the hot flashes. And they were usually followed by the hot flashes! LOL.  I also have degenerative joints and bone on bone knees. Yes they hurt. But not much more than normal. I take an anti inflammatory for that and did before any cancer tx!. I am also on Tramadol for my knees. All before BC. Is it worse on A? Some days good some days bad. But it was that way before tx too. I am staying on A. Even with the joint aches because I understand that. If I went to a different kind of med who knows what that might bring. So i will just take it and wait til I don't have too. Much love. 

  • patty9999
    patty9999 Member Posts: 43

    Yep, no need to ask for trouble if it's isn't there.  Just have to wait and see what happens.  Everyone's body is different.  No hair loss for me.  I've just had the joint aches.  Nothing related to the Arimadex, but they think I have spinal stenosis now.  Been going through PT for 7 months now.  I switched from generic to name brand Arimadex for three months.  Was doing better.  Then, switched back two weeks ago.  But, am going back on name brand as was having issues with my legs more than normal when on the name brand.  Don't know that it's the Arimadex, maybe just coincidence.  Go to see oncologist tomorrow for my normal scan.  We'll talk about the generic/name brand then.

    Sweetandspecial is right.  The people with no se's don't come here.  And, there are plenty.  Two of my coworkers have no se's.

    Patty

  • sweetandspecial
    sweetandspecial Member Posts: 1,669

    Checkers - I'm like you.  52 years old and prior to diagnosis at 51 the only time I ever needed to use sick time was for my annual gyno appointment or if one of my kids was sick.  I had more than enough sick time in my bank to get full pay the entire time I was off for the BMX and then another 2 weeks for the exchange surgery, and I've still got around 3 weeks banked.  I've never had a sinus infection and no ear infections since I was little.  Once in a great while I'll come down with a cold but they're few and far between.  I've always bragged about my great immune system........so sometimes I gotta wonder what the eff happened that BC was able to get a foothold in me!  I don't, however, lose any sleep over it.  BC happened, I did what I needed to do, am following the arimidex regimen as instructed, and am living my life with the plan of making it to 100 years old before I die Smile.  I may cause a few guys to die of a heart attack at the nursing home if I flash my perky bosoms though!

  • loral
    loral Member Posts: 818

    Checkers I'm like you too. I'm 52 and before BC I never even spent 1 day in a hospital, I was more worried about never waking up from the anesthesia. I too would get occasional sinus infections, I always took lots of vitamins and was the healthiest person I new. Never got sick days never missed work. BC snuck up on me and everything is changed.

  • checkers
    checkers Member Posts: 48

    Interesting so many of us were healthy until BC.  Here's hoping good health helps with the SEs Smile

  • ruthbru
    ruthbru Member Posts: 47,698

    I think being in good health otherwise really does help; first to be able to get through the initial treatments, second to be able to bounce back from them faster, third to minimize the SEs of anti-hormonal (exercise is the biggy to help with achiness/stiffness), fourth to make anti-hormonals more effective (if you can keep the weight down & muscle tone up you will have less estrogen circulating around for them to contend with).

  • patoo
    patoo Member Posts: 5,243

    checkers, I have to ditto the others.  I was diagnosed at age 60 but was healthy otherwise.  This month marks my 5 years on Arimidex/Anastrozole and I can say the SE's were few to none.  The few were manageable.  We all react differently and you may or may not have a hard time.  Won't hurt to try as you can always stop and/or try something different if intolerable for you. 

  • MissyL
    MissyL Member Posts: 1

    I have been on the generic of Arimidex since last June. I have tolerable joint stiffness/pain and I have gained 17 pounds since. I have to admit though that I have not been careful with what I eat. I have been trying walk on the treadmill a few times a week but in the summer my husband and I walk a couple miles almost every evening. I take care of six toddlers at my house so you would think it would help with the weight, but it doesnt lol. The feeling of being tired, weight gain and joint pain are my only complaints. I appreciate everyone sharing. 

  • Springtime
    Springtime Member Posts: 3,372

    Hi All,

    I'm new here. I've been on Tamoxifen for 5 years  in March and my Onc wants to discuss (at my appt in April) moving to an AI for 5 years, or staying on Tamoxifen for another 5 years. I'm now post menopausal, we were not so sure about that 5 years ago when I first started the Tamoxifen.

    Have any of you here been on Tamoxifen for 5 years before moving to an AI?

    Or have any of you been on an AI for longer than 5 years?

    Thx.

  • ruthbru
    ruthbru Member Posts: 47,698

    Studies have shown that tamoxifin has been shown to continue to reduce recurrence if taken for more than 5 years (although that has risks of it's own so that not without controversy)  Some doctors are keeping ladies keeping ladies on Arimidex for more than 5 years based on those studies, but they are doing so purely on a 'hunch' because studies have not (yet, anyway) confirmed this is true for it. As tamoxifin and arimidex work in entirely different ways, it is not a given. My doctor wanted me off after 5 years & I was glad to be done. There is a thread about Arimidex for 10 years, but I don't know how active it is. I am not sure about switching from one to another. Drives you crazy, doesn't it!!!!

  • Springtime
    Springtime Member Posts: 3,372

    Yes it does drive me crazy!! I was so hoping to be done after 5 years. UGH. 

  • ruthbru
    ruthbru Member Posts: 47,698

    Well, your stats and mine are similar, so I would ask a lot of questions before I agreed to stay on on

  • carolehalston
    carolehalston Member Posts: 8,212

    I've been on arimidex for 4 1/2 yrs  and am counting the days until my 5 yrs. are up.  My main complaint is weight gain and difficulty in losing weight.  I'm also tired of the warm flushes, mainly at night.  I have taken 75 mg Effexor for the 4 1/2 years and I think it is the reason the flushes are warm, not hot. It also helps me mentally.  Before I started on the arimidex, I read this whole thread and took some of the advice seriously, particularly the importance of exercise. 

    Recently my right wrist started bothering me, but it was following a round of golf.  I may have injured it somehow.  We all had some aches and pains and maladies prior to arimidex so we can't blame it for every joint issue.  Getting older also plays into the equation for oldies like me!

    Those of you starting on arimidex, be reassured that a lot of women tolerate the drug without unmanageable SEs.  Those women don't usually post on this site.

  • [Deleted User]
    [Deleted User] Member Posts: 814
    Carol, Im just over 2 years on A. Strange you mentioning about the flushes. I was all good in this area until about a month ago I noticed a bit of a change. Not real bad but noticeable. I like to periodically encourage those on the A team, cuz I ALMOST gave it up. The joint pain seriously made me feel like 80 or 90... That was about 4 mths in and lasted for a number of months. I definitely found, once you "got going" it helped. Ive increased my walking (about 2 mile a day) and Im faster than I ever was (Im no fitness queen). So in my case Im doing much better with virtually no joint pain now.
  • Jayaytea
    Jayaytea Member Posts: 9

    Chiming in..  "There baaack " 

     I was post menopausal and finally free of suffering thru hot flashes, when I was started on Arimidex.  I cried when they started up again after a few weeks.  But then, I started crying about anything!  After 3 mos my oncol put me on Effexor for the flashes and depression SE. 

    My first year on it is here, and I can say that most SE had lessened to uneventful until the last couple of weeks.

    NOW IM GETTING HOT FLASHES AGAIN!   Is this common or do I need to investigate!?

  • Jayaytea
    Jayaytea Member Posts: 9

    haha.!  Sorry - third paragraph should read "...my SE had lessened to un eventful" not "uneven tofu"!!! LOL - guess I should preview my posts!

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    jay, mine started up with A again too. They have never really gone away completely but they are maybe one or two a day. I can live with them because each one has its own side effects. I'll take the one that I know. I'd mention the change to your MO anyway. If it's a while before your next appt. I'd call. Nothing to lose by making him aware of it. Much love. 

  • nativemainer
    nativemainer Member Posts: 7,923

    While I was on arimidex the hot flashes would wax and wane periodically.  I think it happens to some of us.  But good idea to check with the doc just in case.  Mine said it happens. 

  • kjiberty
    kjiberty Member Posts: 687

    Carolhalston:  I have a little bit of soreness in my wrist as well as my elbow area.  I spoke w/the doc about it and her ordered an X-ray.  Nothing in the elbow, but minor arthritis in the wrist.  

  • dlz913
    dlz913 Member Posts: 8

    Thank you musical and sweetandspecial for your comments.  I often wondered if in the biopsy process, cancer cells could be released into the blood stream.  Sweet and special, what your doctor said is the first time I have heard of a doctor saying it is possible.  Makes sense to me that cancer can spread this way but my docs have all said no.

    Hugs to you both.

  • [Deleted User]
    [Deleted User] Member Posts: 814

    dlz913, Hugs right back at you! Smile

    Im sure theres another thread dealing with this somewhere re biopsy and cancer cells getting into the blood. Cant remember its title, but it may be of some help. I'll have a look and see if I can find it.

    From memory, I was told Chemo was to "mop up" any possible stray cancer cells that may have gotten out of the breast area via the blood system, as my nodes were clear, but Im hazy on it all and how exactly that might happen. I also had clear but close margins.

  • ruthbru
    ruthbru Member Posts: 47,698

    On a Stage II thread, we have been talking about aspirin and it's role in recurrence risk. Even though it doesn't have anything to do with Arimidex, I think it is important enough to share it here too. Of course, if you aren't already taking a daily low dose aspirin, you should check with your doctor before starting to do so. The following is a July 17, 2013 article from Healthline. Pretty exciting!

    "A 2,000-year-old drug that costs just pennies could be the latest weapon against cancer. New studies link aspirin use to lower risk for at least eight types of cancer: those of the breast, colon, esophagus, stomach, prostate, bladder, ovary and skin.

    Harvard researchers reported that women who took low-dose aspirin (100 mg) every other day had a 20 percent drop in colon cancer risk, compared to women who took a placebo, according to new data from the Women’s Health Study. The findings were published in Annals of Internal Medicine.

    “Evidence that aspirin may have cancer-protective properties is both pervasive across medical literature and increasingly robust,” says Marc Penn, MD, PhD, FACC, co-founder and chief medical officer of Cleveland HeartLab.

    Earlier studies have reported that 75 mg a day of aspirin may cut colon cancer risk by 17 to 28 percent, and also lower the risk of death after a colon cancer diagnosis by 30 to 40 percent.

    The study adds to many other new findings suggesting that this ancient remedy may be a remarkably affordable wonder drug that could help prevent cancer or stop the disease in its tracks. Here are a few particularly noteworthy new studies:

    • Breast cancer: In a Scottish study involving 116,181 women, those who took aspirin regularly for 3 to 5 years had a 30 percent drop in breast cancer risk, while a 40 percent risk reduction was seen after more than 5 years of aspirin use.
    • Skin cancer: Women who take aspirin regularly have a 21 percent decrease in risk for melanoma, the deadliest form of skin cancer, compared to non-users, according to a 12-year study of nearly 60,000 women, ages 50 to 79, published in the journal Cancer. After 5 or more years of regular use, risk for melanoma fell by 30 percent.
    • Prostate cancer. Taking aspirin may help men with prostate cancer live longer, by inhibiting the cancer’s growth and spread, according to a 2012 study of nearly 6,000 men published in Journal of Clinical Oncology. The ten-year death rate from the disease was 3 percent among the aspirin users versus 8 percent in non-users.
    • Other common cancers. Daily aspirin use for prevention of heart attacks seems to have an extra benefit: lower 20-year risk of developing or dying from several common cancers, including a 42 percent reduction in colon cancer and reduced risk for esophageal, gastric, biliary, and breast cancer, according to an analysis of more than 41 trials published in Lancet.

    Warning Signs of Breast Cancer

    Why Does Aspirin Reduce Cancer Risk?

    Also known as acetylsalicylic acid, aspirin has two effects that may explain why people who take it regularly for heart attack prevention are less likely to get cancer, says Dr. Penn, who is also director of cardiovascular research at Summa Cardiovascular Institute in Akron, Ohio.

    “Aspirin decreases inflammation, which has been shown to play a role in cancer development, and also blocks platelet function,” reports Dr. Penn. “Platelets carry significant amounts of growth factors that may contribute to tumor growth in areas of tissue injury.”

    Slowing Down DNA Damage in Patients at High Risk for Cancer

    Another new study offers surprising insight into how aspirin may combat cancer. The researchers discovered that the headache-and-heart-attack prevention pill may slow down DNA mutations in abnormal cells in people with a pre-cancerous disorder called Barrett’s esophagus. People with this disorder are at increased risk for esophageal cancer.

    In a new study published in PLOS Genetics, the researchers analyzed biopsies from 13 patients with this disorder and tracked their health for 6 to 19 years. The scientists found that on average, in years when the patients took aspirin daily, they accumulated new DNA damage ten times more slowly than they did in years when they weren’t taking the drug.

    The team plans additional research to explore the theory that aspirin’s anti-inflammatory powers are why it reduces DNA mutations that could lead to cancer."

  • patoo
    patoo Member Posts: 5,243

    Ok, usually take one 75 mg aspirin off and on, more off,  so I'll start taking mine again regularly.  Heard Vit D3 is best taken at night so will add this on my night stand as a reminder.  I'm getting ready to go off anastrozole, I think, next month when I see my MO as it's been 5 years and he never seemed to think I needed to be on longer so anything I can do to keep my recurrence risk down works for me.  Thanks Ruth.

  • [Deleted User]
    [Deleted User] Member Posts: 814

    dlz913, this may help with the biopsy thing....

    http://community.breastcancer.org/blog/what-my-pat...

    ruthbru, interesting post. Thanks.