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Arimidex - Coping with the SE's

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Comments

  • carolehalston
    carolehalston Member Posts: 8,212

    I took the low dose aspirin daily for several years and then stopped.  I'll check with my PCP about taking it again.  Thanks Ruthbru.  You're always up on things.

  • Chris13
    Chris13 Member Posts: 112

    I think D, being fat soluble, is best taken with a meal that includes fat. That can be at night with a larger meal. One study showed an advantage of taking it with the largest meal of the day. I take it with my breakfast, which always includes milk. 

  • Colette64
    Colette64 Member Posts: 15

    hello all!

    I just started Arimidex last Friday (it is my fourth day), and i am experiencing stomach pains. Is that a known side effect? Is it temporary?

    Thanks! 

  • ruthbru
    ruthbru Member Posts: 47,698

    Are you taking it with food? If not, maybe that would help.

  • sweetandspecial
    sweetandspecial Member Posts: 1,669

    Good point Ruth.  I've only been nauseated from it once.  I accidentally took one before bed on the same day as I had already had one in the morning.  I was a little sick to my stomach all night long, probably from both the extra dose as well as an empty stomach at that time of the night.

  • Holeinone
    Holeinone Member Posts: 1,418

    Colete, 

    I have been on Arimidex for almost 1 month. I get stomach pains in the evening, sometimes feels like its on the sides, but it is tolerable. The joint pain, muscle ache is annoying me the most. I am sure it will get better, and it will be easier to be more active when spring is here. Our dx & dates are almost the same...

  • ruthbru
    ruthbru Member Posts: 47,698

    You can try varying the time of day you take it too & see if that makes any difference.

  • 13kkan
    13kkan Member Posts: 9

    Here is a question on one has asked.  Are there women out there taking Arimidex that are experiencing no side effects?  I have put off my MO about taking Arimidex because of fear of worsening side effects. I already have arthritis, extremely thin hair from chemo, and depression. 

    Thank ladies. 

    Kay

  • ruthbru
    ruthbru Member Posts: 47,698

    I took it for 5 years and was fine. In my little town, 5 other ladies I know personally have or are taking anti-hormonals. None have had significant problems with them. It is just natural that people who have difficulties with it are the ones talking about it here, most people aren't are out just living their lives. Try it with an open mind, it is your biggest gun (way more than chemo even) in your fight against recurrence.

  • Holeinone
    Holeinone Member Posts: 1,418

    Kay, 

    I have read what Ruth just said is factual. I figure if I could endure that horrific chemo, I can put up with the side effects of Arimidex. I am not thrilled with it, but I really believe it will give me a fighting chance to prevent mets. I had a lot of cancer in & outside of the nodes. 

    I have only been on it for one month. We are both stage 3, I think you need to try it. You can always switch AIs or quit, but it is certainly worth a try.

  • ruthbru
    ruthbru Member Posts: 47,698

    For me, chemo lowered my recurrence risk 20%, Als 40%.....HUGE! I would have hated to do all that other horrible crap (which I never, ever want to do again!!!!!!) and then not do the thing that would help me the most to avoid having to.

  • aviva5675
    aviva5675 Member Posts: 836

    Im 6 months in and doing pretty well.  Starting lately to have extremely minor aches in toes and fingers, and hot flashes, but have had those for years.  So far so good.

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    I have the joint aches but with osteoporosis arthritis who know what's more redponsible. Also have a trigger finger that is starting to really hurt. But. I could have gotten that front my diabetes. So ill stick with what I know. Been on it 21 months. 

  • Bloominhappy
    Bloominhappy Member Posts: 3

    Hi !

      This is my 1st post, and I was only able to add minimal info on my history in the profile part.

       I had dense breasts and cysts/fibroadenaomas since I turned 17 in 1981. 1st BC was in 2003 - lumpectomy - no chemo and no rads.

       2nd BC was 2012 - T1b grade 1, 0/2 nodes IDC , er/pr+ Her2-, and DCIS - lumpectomy, 4 x taxorene & Cytoxan, rads too. I tried arimidex but at 5 weeks in I couldn`t stand straight and hurt bad. We stopped it and I tried it again - same probs. Onc was not responsive to helping so I stopped it again. 3rd BC dx'd Jan 2014 - DCIS - grade 3, multifocal and necrotic, IDC er/pr+ HER2-, T1c, grade 2, 0/1 node . Bilateral mastectomies 2/24/14. Next week I see the onc.

      I also have survived invasive bladder cancer T3b, cervical cancer and have a bone tumor in my shoulder that is either benign or a low grade chondrasarcoma. Many organs are gone, rerouted. I did gemzar and cisplatin for the bladder cancer in 2007. Life is errr....complicated LOL

      As I said, next week I see the onc. My er was 96% positive and he wants me to do the hormonal therapy. Did anyone have severe se's with bone pain to the point they can't stand? If so what did you do? Also he is likely going to recommend chemo. I went into shock with the taxorene infusions...anyone go thru that? I am not a pansy, truly, just a hot mess with treatments.

      Looking for info, and suggestions, and friends who been there :)

  • ruthbru
    ruthbru Member Posts: 47,698

    You already know you have trouble with Arimidex, so try one of the other anti-hormonals right from the start. As for chemo, you will have to work with your oncologoist about what choices are available for your situation. You do know that you don't want a taxorene, for sure. Best of luck & let us know how you are doing!

  • brooksidevt
    brooksidevt Member Posts: 1,432


    I'd also insist on a really in-depth conversation about AI's and how he can help you deal with them.  Bring someone along to prompt you at the right places if you don't think you can be assertive (i.e.pushy) enough to get him to 'fess up.  Also, this not being your first rodeo, you might want to consider a second opinion, especially concerning the AI stuff.

  • patoo
    patoo Member Posts: 5,243

    Bloomin, is this the same Onc?  If he/she was unresponsive before I would certainly try someone else.  Good luck and please let us know how you make out.

    13kkan, as ruthbru said, many who don't have SE's are not posting and have moved on.  I had minor SE's and am finishing up my 5 years.  As holeinone says, give it a try.  That way you will always know that you did as much as you could. 

  • Bloominhappy
    Bloominhappy Member Posts: 3

    Hi and thanks for responding :)

      The onc is the same one I had for the BC in 2012. I have no probs being assertive with Drs or being my own advocate, but many Drs have a prob with informed patients. My surgeon has asked me to be cautious as she feels he is the best local onc, an having had 7 malignancies - I need a good onc at all times.

      The onc and I did discuss the arimidex fails at my last appointment. I did explain that I asked for help with the se's, had no help given, and that I just prayed it would be ok to quit it and quietly went away. I also explained that I can't afford that this time. If he couldn't stand straight for 5 days he would be able to see the quality of life issue, but since it isn't him - it isn't a big deal.

      I am open to other meds, just not anxious to try ones with higher risks of blood clots.(My Dad died of blood clots)

      Chemo is another complicated issue. In 2012 I was dx'd with BC in Feb, had lumpectomy in June, chemo from July thru Oct, rads in Nov thru New Years. I had mammograms and MRi's every few months - nothing showed in Oct films. But in Jan 2013...it was going to town in the other breast. Drs don't think it was missed by imaging, but they also think the chemo had no effect on the tissues either. I am afraid of "stronger" chemo after the 2012 rounds.

      I do appreciate the input, and I truly am a Bloominhappy soul just trying to find my way thru this cancer like I have the others. I'll keep researching and checking the threads. Healing vibes to all!

                              Thanks :)

  • corky60
    corky60 Member Posts: 453

    Bloomin, my MO told me that Aromasin is the gentlest of all the AIs.  And I see in the discussions that some ladies find help with SEs by taking Claritin or its generic equivalent.  You could search that on the boards.

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

    bloomin welcome to the boards. Sorry to hear of all youve been through. 

    I don't want to sound like this is a "pat answer" but it may help. First, are you bent over all of the time or are you worse sometimes. DO you find with a bit of movement theres a little improvement? I truly felt like I was 90yrs old about 4 mths in. It hurt to get up out of a chair to get out of bed etc. My joints ached like crazy in my hands. I came so so so close to ditching it. I persevered because I did find the joints freed up after some movement. As things freed up I walked further. Im no fitness freak but see the benefit in a little exercise. Now Im doing better and faster than I ever have doing my 2 mile a day.

  • dlz913
    dlz913 Member Posts: 8

    Thanks Musical.  I have looked for articles about biopsy before but must have missed this one.  In any event, its too late to worry about it since I did have a biopsy.  I wish they could figure out why bc spreads in some woman and not others!  The anxiety of not knowing which side one is going to fall on is something I'm sure we all share.

  • Kitty62
    Kitty62 Member Posts: 9

    Having bad SE's here. achy joints, feel like I have the flu, etc. Has anyone used the wacky tobacco, aka marajauana to help with the feeling like a 90 yr old woman? Actually, I think 90 year old women feel better than I feel some days. Right now I'm turning to "Jack" to ease the pain and my hubby is starting to be concerned since I'm not much of a drinker. LOL  Oh, I better add that I live in the great state of Washington where it is legal to have an ounce of the Mary Jane. 

  • Bloominhappy
    Bloominhappy Member Posts: 3

    Hi,

      I will be asking about the aromasin for sure.

     And yes I was unable to stand straight. I had to lose my bladder with the invasive bladder cancer in 2007 so I have a urostomy. It has become quite herniated so I am limited in things - lifting, vacuuming, etc. My back and ribs hurt so bad taking the arimidex, thought my kidneys were in bigtime trouble. I walk, make the bed, etc do what I can. I have a high tolerance for pain - gave birth without even a Tylenol 30 years ago. So I am sure I am not being wussey!

      The onc appointment is next week, and I think the oncotyping will be in by then too.Will keep you posted

     

  • iamnancy
    iamnancy Member Posts: 641

    Kitty - I had that achy flu-like feeling in the beginning - I think it lasted about 2-3 months and then just went away.. so hang in there - it'll get better. Can't answer about the Mary Jane - not legal in NJ.. and I'd be more concerned with my appetite increasing with it - sure don't need that problem LOL

  • Kitty62
    Kitty62 Member Posts: 9

    Thanks for the encouraging words iamnancy. I told myself I would hang on for 6 months. Some days aren't too bad, but it sure makes it hard to plan anything. I have my surgery on March 24th so I will be out of commission for awhile. Hoping that when I get back to work it will have eased up on the SE's. And you're right about the appetite thing...don't need that! 

  • ruthbru
    ruthbru Member Posts: 47,698

    If you are still having surgeries, you are still in the middle of 'getting through it'. I don't think you can really even expect to start to mend until you are 'done, done', so be nice to yourself and patient during the process. I always suggest getting some exercise, whatever works for each person, because it really, truly does help with fatigue, achiness, improves one's mood (reduces recurrence risk)......everything.

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    Kitty, What ruthbru said! Hang in there. With more sx, you aren't done and your body hasn't had time to deal with the changes. However if you are in such pain yet perhaps swapping out your AI would help. There are a couple to try and they all have SES but everyone is different and it might be a smaller SE for you. 

    Bloominghappy sorry you are in pain. I will hope you can find aromasin is better for you. 

    Much love. 

  • Kitty62
    Kitty62 Member Posts: 9

    Thanks Ruth and Moon! I really appreciate the advice. I guess I just have to be patient, which imam not very good at. I'm thinking maybe getting up and exercising before work and asking if I can come to work an hour later. That might be an easy solution. I've just got one more week of work until The BIG surgery(DMX scarless dorsi flap and TE's). Thank you so much for tour kind words and advice. It's all so overwhelming when I'm alone to think about all this. Gotta get busy and get this house organized before I have little control. No patience and lack of control equals me...a hot mess. LOL

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    HUGS!

  • sweetandspecial
    sweetandspecial Member Posts: 1,669

    Kitty - if there's one thing we all have to learn to deal with on this journey it's patience.  Might be easier some times than others and we all occasionally get cranky or anxious or depressed or manic or whatever, but WE DO GET THROUGH IT.....and you will too Smile.  It can be overwhelming as you said, especially the period prior to the mastectomy.  Once that's out of the way you'll realize you're a much stronger woman than you realized and then you can concentrate on the next phase.  All you have to do is get through one moment at a time and before long you'll realize how far you've come.  Hugs to you - and keep us posted.

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