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Arimidex - Coping with the SE's

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  • Hi many many SE from taking Arimadex one of many is gaining weight. I don't have much of a appetite and eat healthy and work out and the weight just keeps going up! Please check out and discuss with a fellow BC warrior and researcher about New Research Study Post Cancer weight management. Just got off the phone from doing a interview with her. She is gathering information that can help other cancer survivors and it does not take much time. Click on clinical trials and research.

    Diane

  • Ex-Bronxite
    Ex-Bronxite Member Posts: 1

    I am about to start radiation and then begin Amiridex. It seems that weight gain is almost inevitable so I'd better start eating in a much better fashion right now. I basically am a healthy eater, but it sounds like you have to truly exercise and be very diligent in order to keep weight under control. I will be hopeful that the side effects will be tolerable

  • janett2014
    janett2014 Member Posts: 2,950

    So there's a thread I just stumbled upon: cough and arimidex (in forum Hormonal Therapy - Before, During and After). It hasn't been very active, but it became an "aha moment" for me.

    I have had a persistent cough for awhile but never associated it with Arimidex (actually Teva Anastrozole for me). I've been on the medication for about two and a half years and wonder if the cough is a side effect.

    I have occasional fairly minor joint pain but really no other side effects.

    I had hair thinning issues starting about a year before Arimidex, but a good dermatologist has helped me greatly with that.

    Anyone else have coughing issues not associated with a cold, flu, or allergies?

  • Goodie16
    Goodie16 Member Posts: 297

    I've been on Arimidex since September and have tolerated it so much better than Tamoxifen. At any rate, though, I have recently developed a ringing in my ears. I did a quick google search and it appears this can be a SE. Does anyone else have this? If so, were you able to treat it or do I just need to learn to live with it?

  • NY2TXbaby
    NY2TXbaby Member Posts: 113

    goodie16 - I too experienced ringing in my ears on Arimidex. When I asked my doctor about it she seemed to indicate it was not a known side effect. So I didn't even bother googling it. So glad to hear I wasn't just the only one. Because my joint pain in fingers and feet was getting worse she recommended I switch to Aromasin. She said the efficacy of both were the same, but people seem to experience less joint pain side effects on Aromasin. So far I have not had the ringing in the ears very often - only occasionally while on Aromisin. Not sure there is really anything that you can do about the ringing in the ears. Unfortunately I think it may be just another side effect we just have to learn to live with - like so many other things. Hugs, Candy

  • Goodie16
    Goodie16 Member Posts: 297

    Thanks for your response, Candy. I'll be sure to ask my onc about it and possibly switching to Aromasin at my next appointment in February. I'm so hesitant to switch AIs because I'm stable right now, but this ringing is really starting to interfere with my sleep and such.

    Best wishes.

    Carrie

  • katcar0001
    katcar0001 Member Posts: 321

    I've been following this board since I am going to start on Femara soon after my ooph.

    Carrie - I just wanted to tell you that I developed severe, high-pitched ringing in my ears while on Tamoxifen. It drives me insane sometimes, and it interferes with my sleep. The thing that has saved me from jumping off a cliff is using masking sounds at night, which I play on my ipod through a tiny speaker. Some people use pillow speakers. You can go on youtube and mynoise.net and look for tinnitus masking sounds. There is also an app. Play around until you find the one that soothes you. Unfortunately, one you get tinnitus, there does not seem to be a cure--rather you adjust to it so that it recedes to the background and becomes virtually unnoticeable.

  • Goodie16
    Goodie16 Member Posts: 297

    Thanks for the tips katcar0001! I will look those up on youtube and check out the app store.

  • homemom
    homemom Member Posts: 842

    Janett2014 - I have not had any thing out of the norm as far as a cough, but how did your dermatologist help you with your hair thinning? My hair looks healthy, but has definitely thinned.

  • janett2014
    janett2014 Member Posts: 2,950

    HomeMom,

    Regarding thinning hair, the dermatologist I see has me on several over-the-counter supplements as well as prescription pills, shampoo, lotion, spray, and injections in my scalp (those happen every 3-4 months and aren't as bad as they sound). It has all made a big difference for me. He told me he treats lots of women who have had cancer.

    Don't go to just any dermatologist; it needs to be someone who deals with hair issues.

  • homemom
    homemom Member Posts: 842

    Thank you Janett - it isn't too bad, but goes flat and my part isn't as full as it used to be. I'll keep that in mind when I start going back to the dermatologist

  • brutersmom
    brutersmom Member Posts: 969

    I am struggling right now whether to continue with endocrine therapy or stop. I think that the answer is going to be stop. After a year and 3 months on Arimidex I have started having panic attacks and I don't want to say suicidal thoughts but when I go to bed at night I don't want to wake up in the morning. I rarely sleep more then 3 0r 4 hours a night. I work a full time and I no longer love what I do. I recently took a break from Arimidex. I was a changed person after about a week. The old me was back. I started back up after 4 weeks off and the symptoms all returned. The MO switched me to Femera. For the last two weeks I have done nothing but cry. Everything upsets me. I can't stand to have my dogs touch me or bark. I almost hurt one last night. Today I did not take the evil pill. By noon I was beginning to find the old me. My next step is to try Tamoxifin. I will probably give it a try but I am not sure I want to bother. Has anyone walked this road and able to share some in site or suggestions.

  • lafish
    lafish Member Posts: 32

    hey Brutersmom, just wanted to let you know that when I started on each AI I was on an antidepressants for a few months, I had both anxiety and depression issues. After about 6 months on antidepressants I stopped taking them after discussing with my GP, other side effects made me switch to tamoxifen and for whatever reason I am not having any issues with depression.

  • jpBCfree
    jpBCfree Member Posts: 72

    Brutersmom your side effects sound terrible and not sure you need to take the 'big guns' of AIs with your stage 1 no lymph DCIS. My diagnosis was similar and my doc was pushing AIs but I did a ton of research because concern for more intense SE and permanent bone loss from AIs to gain just a couple percentage points lower for recurrence compared to Tamoxifen. So I opted for Tamoxifen and 6 months into it very mild/few SEs and feeling confident that I can make 5 years. Check the 'bottle o tamoxifen ' discussion for more info.

    Also key for any of these strong drugs is healthy diet (foodforbreastcancer.com, nutritionfacts.com) and daily exercise (30 minute walk) and stretch. Helps your liver process it all.

    Good luck and take care

  • brutersmom
    brutersmom Member Posts: 969

    Thanks all for your replys After 78 hours off Femera. (I was only on it for 2 weeks) I feel that I am a human being again. The feeling of not caring if I lived or died is gone. I actually have had two nights sleep of 7 hours or more. I am looking forward to spring. Everyday while on the drugs was just putting one foot in front of the other just to get through the day. Even my dogs sense the change. My break in February took 2 weeks to begin feeling human again and then I caught a cold so I never really got to feel what it would be like to be off ALs. I tried Arimdex again and within 3 days I felt shaky inside. We then tried to give Femera a try. I spent most of my mornings crying over every little thing and was not a nice person by evening. Ask my little dogs. I wouldn't even let them touch me. They love to snuggle against me.

    My MO had suggest I try Tamoxifen. I think before I do that I am going to take a couple of months off. I am hitting my busiest season at work and would really like to be at my best for a couple of months. I also want to give my body extra time to recover. I did not realize how bad I was on the drug. On my last visit my MO gave me the choice of no meds and closer follow up or trying Tamoxifen if the ALs fail. My 2 year is coming up in June with my surgeon. I think I will make my decision of Tam vs no med at that time.

  • swivel2020
    swivel2020 Member Posts: 7

    Kaymax1, yes, I have been wondering if it's the Arimidex that's making me so exhausted after doing simple chores. Or is it a delayed side effect from radiation or my recent reconstruction?

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900

    To 509377 . There is a lot of discussion in the Alternative Medicine forum on marijuana, and you may need to try different formulations. Illegal where I am, and takes about 1 1/2 hours to get where I can buy it. I asked at the store for recommendations for sleeplessness , joint/pain issues. I was not interested in the "high". Blends with higher CBDs vs THC were suggested as well as "indica" vs "sativa". The first time I purchased buds and drank as tea or made cannibutter-cookies. The second time I tried either a tincture or "tar". The buds seemed to work better. The tincture does not seem to do anything, and the "tar" seems to make me restless.

    2009 ER+ left breast. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

    2016 ER+ left breast. Normal right. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Blood pressure dropped during chemo and remains lower than it was (probably a good thing), do not know if TC had this affect. It dropped almost immediately during 4 rounds of TC, and continues running lower than it was, I am taking anastrozole. I have been taking a BP med for the last couple of years, and it seems like it was usually 120-130ish/80 prior to chemo. During chemo it was often 95-105/60, and is now about 115/65.

  • nativemainer
    nativemainer Member Posts: 7,945

    BlueGirl--chemotherapy is known for decreasing blood pressure. There is a joke in the medical community that the best treatment for high blood pressure is to get cancer and do chemo, most people end up coming off the blood pressure meds and never going back on them.

    It will never be a popular treatment, though.


  • Houston2016
    Houston2016 Member Posts: 248

    Hello Everyone, I've been taking Anastrozol since December 2016; most of SE was joint stiffness in the hands, fingers and toes, and bilateral hip when walking or getting up from sitting too long. But recently, in September 05 I started to feel aches behind the back above buttocks, thigh and ankle aches, weakness, but no numbness. I went to PCP who did blood work. My calcium is 9.6 and ALP is 105. I also have generalized aches on my arms, biceps. Could these be bones Mets symptoms or Anastrozol? Does anyone have similar experience? Thank You.

  • nativemainer
    nativemainer Member Posts: 7,945

    Houston--the labs can be from either mets or the anastrozol. The generalized aches and pains are more likely from the anastrozol. If you had bone mets you would be more likely to have deep aching pain at certain points and not likely to be in both legs or both arms simultaneously. The aching, stiffness and weakness you describe are classic AI joint pain. Of course, the best thing to do is to talk to your MO and get a bone scan or PET scan to determine for sure if there are mets or not. Does the aching ever away completely? Like when you are sitting down and not moving for a while? If the pain goes away completely it is less likely to be bone mets.

  • dtad
    dtad Member Posts: 771

    Houston...high calcium can also be from parathyroid disease. I know our minds always go to the worst but it doesn't have to mean the worst. Good luck and keep us posted.

  • LettyF
    LettyF Member Posts: 39

    Hello

    I'm new to this thread as I just picked up my Rx for Arimidex yesterday as I was previously taking Tamoxifen and by baseline blood work in March and again last week showed me post menopausal hence the change. I was hoping the side effects would be less with this new drug as I was scared to death of all the SEs of Tamoxifen and this does not seem much better. I wonder if there is a homeopathic substitute or if I would be totally being irresponsible by not taking the medication. I had no evidence of cancer in my lymph nodes and with the BMX there was definitely clear margins as the left was prophylactic and my BRCA came back negative. I haven't taken any of the Arimidex yet and still contemplating it. Any advice and if I do take it what are safe supplements that I should be taking to offset some of the SEs without contraindications.

  • nativemainer
    nativemainer Member Posts: 7,945

    LettyF--your best protection against recurrence and the emergence of mets in the future is the anti-estrogen therapy. Statistically it's even better than chemo therapy, and that is the reason early stage bc no longer automatically gets chemo. There are no supplements or complimentary medications or treatments that are scientifically proven to provide the same level of protection as tamoxifen or the AIs. The side effect profile of the AIs like Arimidex is frightening. It's hard to remember that the majority of women taking these medications do just fine. It's also important to know that if you do have problems with Arimidex you can try one of the other AIs, or go back to Tamoxifen. I strongly recommend that you give Arimidex a try. You can do a lot to off set the side effects with excercise. I took loratadine (an over the counter allergy medication) and that decreased the joint aches notably. We are fortunate to have this option available to us, we may be the first generation of women with bc that won't have as high a rate of brain and bone mets showing up 25 years from now as our mothers do.


  • LettyF
    LettyF Member Posts: 39

    Good Morning NativeMainer,

    Thank you for the post. I've done some additional reading and called my Oncologist's office just to talk with them regarding some family history. My mother died of cancer (not breast - uterine/cervical cancer and eventually her kidneys/bones) when I was 10 and my father had a heart attack and passed away when I was 17 so I'm very leery. I also have my maternal grandmother who had breast cancer and my fathers sister as well. I really should just take the medicine and try it before getting all freaked out. I will look into taking the antihistamine as well.

  • dtad
    dtad Member Posts: 771

    LettyF....I take DIM in leu of an anti hormone. I also do several other things to lower my estrogen naturally. Please feel free to PM me if you would like more details. Good luck to all.

  • BarredOwl
    BarredOwl Member Posts: 261

    Letty has indicated she is not averse to trying the Arimidex prescribed by her Medical Oncologist and that she feels she should give it a shot:

    "I really should just take the medicine and try it before getting all freaked out."

    She further stated: "I haven't taken any of the Arimidex yet and still contemplating it. Any advice and if I do take it what are safe supplements that I should be taking to offset some of the SEs without contraindications."

    By my reading, the above is not a request for supplements in lieu of endocrine therapy, but for supplements that might ameliorate the side effects of her prescribed treatment plan.

    BarredOwl

  • wabals
    wabals Member Posts: 192

    HoustonAll my liver function tests were high on anastrazole.

  • BarredOwl
    BarredOwl Member Posts: 261

    Thank you for your input. I have revised it

    BarredOwl

  • ruthbru
    ruthbru Member Posts: 47,794

    I would definitely give it a far shot. Take it planning that it will go fine and deal with side effects when or IF they occur. Most people who are doing from okay on it quite naturally aren't posting about it. I have a number of local friends (sadly BC is quite common) who take or took it (including myself) with little to no problems, and none of us had such great problems that we had to quit early. It is a huge plus that we estrogen plus women have this option. Ladies I know who are hormone negative would give a great deal if they had something they could take after the initial treatments to reduce their risk of recurrence.

  • Tappermom383
    Tappermom383 Member Posts: 401

    Letty, I started on anastrozole on July 17. So far, so good. My dry eye problem seems to be a bit worse but I have drops for that. I take generic Claritin every day as folks have said it helps prevent the joint pain (which I haven't experienced). I'd go ahead and start taking it - you can always stop.

    MJ