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For Arimidex/Anastrozole new, past, and ongoing New

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  • jnu3
    jnu3 Member Posts: 56
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    Congratulations on your upcoming daughters wedding. I have my niece coming up in August and my significant others niece was just Friday in Texas. We were no in attendance but have enjoyed the pictures.

  • Duzy
    Duzy Member Posts: 65
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    so I haven't seen any posts lately. I have been busy finalizing the wedding plans. Jnu3 glad you at least got to see pictures

    Well about 2 months in and I am starting to have tingling all over but mostly my back around to my stomach hands and feet. I had a X-ray to rule out spread to the spine and they said I have degenerative disk starting which know I am concerned it getting worst with this medication. I also seem to have a very dry mouth


    I hope everyone is doing well





  • Kaneli
    Kaneli Member Posts: 65
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    Hi There everybody! I will begin my anastrozole when I get back from my trip to Italy. Meaning I will start it June 5th. I am dreading it! But I am feeling encouraged that a few of you have not suffered severe side effects. I am concerned about weight gain, and I am trying to get on a better exercise regimen, etc. My daughter is getting married as well....not til next March 11th. But I would love to lose 20 pounds, or more, to be a beautiful, slim Mother of the Bride!! Not the best time to begin this Anastrozole, huh? Oh well, I am appreciating the conversation and I am sure I will have more input once I begin the HT! Good luck to everyone!

  • Grazy
    Grazy Member Posts: 231
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    Hi, I haven't posted on this Arimidex/Anastrozole site before; I visited the old one a while back not realizing this one existed. I started Arimidex just over a month ago, two weeks before starting radiation. I have no other health issues and am in fairly good shape so my MO felt I could tolerate doing both at the same time. All is going very well so far! My MO suggested I take Glucosamine sulphate to help with joint pain while on the AI and I wondered if anyone else is also doing that. She also requested that I take Vitamin D and Calcium. Once I'm finished rads, I'll be adding Zometa to the mix for bone loss and to add further protection against bone mets. Will be interested to keep informed of others' side effects as time goes on.

  • Smurfette26
    Smurfette26 Member Posts: 269
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    Grazy I'm taking Vitamin D & Calcium too. I had severe muscle and joint pain when I started on Anastrozole but have now switched to another brand and it's much improved. I'm also taking Magnesium and Tumeric.

  • Sunnyone22
    Sunnyone22 Member Posts: 61
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    Grazy - I finished rads a couple weeks ago and am due to start twice-yearly Zometa infusions next week. I'm on Femara (AI) rather than Arimidex/Anastrozole and so far, no SE's. My bone scan showed borderline osteopenia at neck of femur (now taking Calcium/Vit D) so hopefully the Zometa will counteract any other bone deterioration caused by AI. Also, Zometa seems to prevent or at least reduce bone mets risk. I like that!

    I look forward to hearing if you have any SE's from Zometa and I'll keep you posted if I do. Will you do just 2X per year?

  • Grazy
    Grazy Member Posts: 231
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    Sunnyone, I'm so glad to know there's someone else who's about to take Zometa! I will be very interested in hearing how you make out with the infusions - yes, I'll also be doing them twice yearly - and I keep you posted on my experience as well.

  • pboi
    pboi Member Posts: 148
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    I've been on anastrazole since Aug 2015 and due to early osteoporosis on dexa scan had my first Zometa infusion this past Feb. Tips I learned on this site to decrease side effects....hydrate a lot 2 days prior to infusion and for few days after, Claritin day before infusion and a few days after. Have infusion run in over 30 min, apparently running it in slower helps decrease side effects. Many say side effects, if you have any,are worse 1st infusion, but are better in subsequent infusions.

    My experience...I had my infusion run in 15 min, I hydrated a lot, took Claritin, and took Tylenol for 2 days. Day of infusion, I started feeling tired and achy late that afternoon. That first night chills but no fever. The next day felt flu like, fatigue and body aches...gradually lessened over about 3 days. After that was just fine. Hope this helps.

    PB

  • Grazy
    Grazy Member Posts: 231
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    So helpful, yes, pboi - thank you for sharing your experience with Zometa. What is the purpose of taking the Claritin? I'll be interested to hear how your second infusion goes (August, I guess, if your first was in Feb.), if you do find that the side effects lessen. I'm getting the idea from various things I've read that it's wise to block off two or three days after the infusion and lay low.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    I started using Claritin when I got severe bone pain from Arimidex. I already have too much bone pain and it was crippling me! It took a couple of days to build up in my system and it isn't cheap but it WORKS!!! Apparently Claritin is an anti-inflammatory for the nasal passages and it works on bone joint as well. I'd heard about ladies using it around chemo days and had always wondered....

    I take it every day with all my other meds as well as tumeric, magnesium and B12. I can't take the Glucosamines due to liver damage from too many Tylenols in the past before I was put on proper pain meds.

  • pboi
    pboi Member Posts: 148
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    Like the above poster mentioned I believe that it has anti-inflammatory effect. I used it to stave off bone pain during chemo, and didn't have a lot of bone pain so thinking it worked? Heard it would help the same with Zometa so figured a few days of Claritin wouldn't hurt so used it again.

    Yes next infusion in August, will be blocking off about 3 days to lay low, just in case.

    PB

  • Grazy
    Grazy Member Posts: 231
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    Interesting about Claritin and relief from joint pain, I didn't know that was an added benefit of the drug.... I'm already on the Glucosamine (sulfate) for that reason - preventative at this point re: the Arimidex - so I'll just see how it goes. Really appreciate the input, ladies, thank you!

  • Sunnyone22
    Sunnyone22 Member Posts: 61
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    Ditto what Grazy said. All this info is very helpful as we face infusions soon.

    Claritin is actually an antihistamine so I'm unsure exactly why it helps with Zometa SE's but I plan to ask my MO because if it helps in some way, I want to take it.

    I didn't realize the flu-like symptoms continued for several days. Ugh. Here's to hoping that particular SE doesn't show up.

  • tessu
    tessu Member Posts: 1,294
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    I started Arimidex the end of January, so have been on it almost four months now. Up till recently the only side effects I've had were hot flashes (but not much worse than from menopause two years before bc diagnosis) and stiffness in the morning or if I'd been sitting for awhile. But now the past week I've been getting increasingly severe muscle pains starting in my legs but now also in my lower back and upper arms :( Could this be an Arimidex SE starting so late? I plan to try that Clarityn some of you have been talking about here, because my stomach hurts like heck from the Naprosyn and Tylenol..

  • Grazy
    Grazy Member Posts: 231
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    tessu, I'm sorry to see you're experiencing discomfort; please keep us posted if you find something that gives you relief, and just to let us know how it's going as time goes on. I think I've read on the older Arimidex board that some women switch to a different brand and find some relief. Maybe the ladies on there can give you some good advice. It would be pretty brutal to be on a drug for 5-10 years if it causes pain!

  • tessu
    tessu Member Posts: 1,294
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    Thanks, Grazy. The only thing I could think of that I had been doing differently lately is not using the exercise bike for over a week (partly toenail infection, partly because of an out of town trip, but I walked a lot there). So this morning I did a good 30 min., and although other parts are still sore, my calves feel a lot better :) So that tells me I need to bike more ;) Some women have mentioned Clarityn helps (like it did for Neulasta pains), so I plan to pick some up when I can.

  • jnu3
    jnu3 Member Posts: 56
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    Anastrozole - now starting the third month. My routine has been anastrozole in the morning along with 2 x multi B, Coq10, probiotic and Caltrate chew (600 calcium/800D). That is also when I aim to hit the exercise bike for at least ten minutes to stretch my morning stiffness out. Evening is atorvastatin, 2 x 2000 D3 and another Caltrate chew. I encounter muscle cramping periodically, but was experiencing that prior to the Big BC diagnosis. I use tonic water which seems to keep the cramps at bay. Other than that I don't have much in the way of side effects other than the DAMN HOT FLASHES that I had thought were long gone.

    As for weight loss/gain, I don't really find that anastrozole is to blame for one of the other. I am having a significant internal battle over food and what I want to eat and what is good to eat. BUT that of course is the every day story.

    Any pain and discomfort that I have has been related to my knees which were pre-existing the BC so I cannot blame Anastrozole. I have now been scheduled for my right total knee replacement. My left knee was done 5/2012 and now I just deal with stiffness. I am so much lighter that the first surgery and plan to take off at least an additional 10 - 15 before June 21. I am not going to carry around any more weight that I have to. I joined weight watchers and now if I can just commit myself to ME and the future.

    Happy Saturday to all.

  • Grazy
    Grazy Member Posts: 231
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    I guess I need to spend a little more time over on this board since rads are ending in a couple of weeks. I've been on Arimidex for a few weeks now and I'd say the only side effect I've noticed lately is the resurgence of (mild) hot flashes, something I'd had anyway for about five years but were beginning to dissipate before my diagnosis. I assume they're related to the drug. At least I'm familiar with them, so they're not throwing me off too much; it's just more of the same old stuff. I bought a little Chinese fan at the dollar store which I like to use with a flourish when nobody is looking, except for my kids and husband - it seems to entertain them, lol!! Glad (so far) to be taking the AI because, weirdly, I do find some strange security in popping that little white pill every morning!

  • Sunnyone22
    Sunnyone22 Member Posts: 61
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    Grazy,

    When I first started Femara a couple months ago, I experience mild hot flashes too. I hadn't had them in about 10 years and they were so mild I wasn't even sure I was having them (Was that just a hot flash??!!) Now, they seem to have gone away, so maybe they'll be temporary for you too. Other than that, no side effects and I agree - there's a sense of comfort knowing I'm doing something every day to prevent recurrence.

  • Grazy
    Grazy Member Posts: 231
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    Thanks, Sunnyone - I should have added that I also experience a hot flash if I have a glass of wine! Of course my reaction was "Say it isn't so!!!" I think that may have been the case a few years ago at the beginning of menopause for me as well; I do remember there being a correlation between the two but it eased off over time. Hopefully this new wave of flashes is short lived as you say, because I do enjoy a glass of wine on the weekends! I can just see myself on the porch this summer: sip wine/fan self. :)

  • Kaneli
    Kaneli Member Posts: 65
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    Dear Grazy and JNU3, I am happy to hear that your SEs are mild so far regarding the AIs. I will be leaving for Italy tomorrow, and I will be back June 4th. My MO and I agreed that it would be fine for me to wait until I get back to start my anastrozole. My accelerated rads were completed April 1st. Now I am getting anxious to start the AIs and get that "feeling of security" you talk about, and also anxious in a negative way, with dread of the SEs. I appreciate hearing of the "not terrible" SEs and your posts ease my mind in anticipation of the upcoming regimen. I know that these forums are a great way to post about the problems and difficulties we have with this BC &#$%. That can be daunting and discouraging. But it's also good to remember that these little white pills may very well keep the BC beast at bay, and hopefully it will be with minimal disruption. Anyway, I do appreciate hearing the not so bad about AIs and am ready to begin!


  • Grazy
    Grazy Member Posts: 231
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    Kaneli, I'm so glad you're encouraged by the positive posts on here. Not everybody has a terrible time with any treatment, it's just that those who don't suffer much in the way of side effects don't usually bother posting, naturally. I like to give hope because I'm doing quite well so far, but - trust me - if things go awry, you'll hear about it!! It's very early days and I know these drugs take time to build up, so time will tell. Have a fabulous time in Italy!!

  • Sunnyone22
    Sunnyone22 Member Posts: 61
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    Kaneli - let me chime in here and say that I, too am having no SE's from AI. I take Femara (Letrozole) and haven't really noticed any problems at all. I've taken it daily for two months now and feel I'm tolerating it very well. Like Grazy said, probably a lot of the women who don't have SE's don't post here. Of course, one of the SE's we don't feel is the damage AI's do to our bones. To counteract this SE, I'm going in for a Zometa infusion on Friday. My bone scan showed borderline osteopenia (which is precursor to osteoporosis) and 5 years minimum on Letrozole will likely exacerbate this condition. Zometa infusions twice a year will help counteract this "hidden" SE.

  • jnu3
    jnu3 Member Posts: 56
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    The positive is what I was looking for when I first started watching these posts. All I saw were the negatives and, honestly, it really shook me up. I could see no way that I was going to endure a week, a month, let alone 5 years of SEs. I would not have been able to commit to that. I am glad too that I am not the only one that is sharing that there is light and a way through with the little white pill.

  • Grazy
    Grazy Member Posts: 231
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    Sunnyone - I'll be very, very interested to hear all about your Zometa infusion and how you feel in the days following. My first one will be soon, I think. I see my MO tomorrow to review how things are going on Arimidex and to discuss a start date for Zometa.

  • Grazy
    Grazy Member Posts: 231
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    I just had my first follow up appointment with my MO since starting Arimidex five or so weeks ago. She asked what kind of side effects I've experienced so far and when I said that I feel I'm tolerating it very well, she seemed concerned. After thinking for a bit I told her that really stiff hands woke me one night recently and she was relieved and said, "Yep, that's the Arimidex!". She said if someone comes in after being on the drug for a few weeks and reports zero side effects, that's not a good thing, it's not doing its job. I told her that I'm not one to complain so I had to dig and come up with something else to "reassure" her :) I mentioned that my hot flashes, which had subsided for the most part, were returning and she was happy to hear that as well. So weird ;) but I get what she was saying - she needs "proof" it's working. She made it very clear that there will be side effects with this drug, but most should be tolerable. She said if I can't function, then that's the time to call her (in between my regular six-month check ups). She mentioned some people contact her because they're having hot flashes, and she's was, like, ??? That sounded similar to the "if you can't dress yourself" remark, although my MO wasn't unkind in her delivery, just telling me when to call her and when not to.

    I had a blood test earlier before my appointment to check for kidney function and calcium levels. Both were fine and I'm good to go on the Zometa. She mentioned there's no sense of urgency with starting it and that it can be at my convenience, so we decided on August after I've completed some dental crown work I'd like done in June. When I mentioned we're taking vacation in July, she said let's do August, then - so there's literally no urgency. She really touted its benefit in preventing breast cancer recurrence in early stage, post-menopausal women, and there is the added benefit of its preventing bone loss, but she said that's not what she prescribes it for, as she rarely sees fractures caused by Arimidex - she prescribes its mainly for the recurrence prevention in someone like me. She mentioned it's a 15 minute infusion - I'll see her the day before and have my blood checked - in other words, I'll see her only twice yearly going forward. I'll be on the drug for 3-5 years, but she made it clear that if I don't tolerate well for whatever reason "Off you'll come".

    I like my MO very much - she's very engaged when we speak, does not rush me, and explains things in great detail. Anyway, I thought I'd mention how my appointment went should anyone else be at this same stage of the game. Everyone will tolerate Arimidex differently, of course, and I'll be eager to compare notes with everyone as the weeks/months/years go along. I hope my future side effects don't become intolerable as I know they have for some.

  • Sunnyone22
    Sunnyone22 Member Posts: 61
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    Well, Grazy - I was feeling pretty good about not feeling side effects of Femara until I read your post. It hadn't occurred to me that Femara might not be working. I just thought I was lucky.

    I had a few tiny hot flashes in the beginning but they've stopped. I also had stiffness in my hands and wrists right at the start but I had that BEFORE I started Femara because I have arthritis there. I still have that pain now - it's worse some days and better others. Usually dependent on the weather. (Not kidding - the weather does make a difference - I'm one of those old people!)

    My BC was 100% estrogen receptor positive so I thought the AI would be very effective. Now I'm not so sure.

    I go in for my Zometa infusion tomorrow. Hopefully my MO will be there but I'm not sure. Her chemo nurse is coordinating and administering it. If MO is there, I'll ask because this question has now been pushed to the front of my mind.

    Thanks very much for your informative post. I need to ask questions and get comfortable with this.


  • Grazy
    Grazy Member Posts: 231
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    Hi Sunnyone - I'm sure your AI is working perfectly fine, because I can't imagine how a drug can't actually be "working"! My MO wanted to hear the slightest little side effect and she was happy. From what I understand, it takes a while to build up in one's system before side effects like joint pain, etc. really begin to show (someone please correct me if I'm wrong on that). I've read posts from a woman who's been on Arimidex for ages and she says she's never suffered serious side effects. Also, I've read that some women have side effects like hot flashes and then they begin to wane, like with you, so clearly it's doing its job! My MO just meant people who have never felt a single darn thing ever, and I can't imagine that actually happening. So we should be happy for cramps and twinges in the beginning ;)

  • jnu3
    jnu3 Member Posts: 56
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    Anastrozole or any other medication does not have to have side effects to prove it is working. Yes, I have had the return of the "hot flashes" which had basically disappeared as menopause made its way through. My MO said that there may be SE's but was glad to hear that I was not experiencing any. I am into my third month.

  • Sunnyone22
    Sunnyone22 Member Posts: 61
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    Thanks Grazy and jnu3. I wonder if there's any kind of blood test or something to determine if one's body is properly metabolizing these AI's (the way they do for chemo). I suspect not. I guess to some extent, we make a leap of faith when we take these meds that they're doing their job.

    I called my MO's office today and was told the MO was already scheduled to see me before my Zometa infusion tomorrow so you can sure I'll ask her!