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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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    I know that prior to my BC diagnosis I was seeing a naturopath because my hormones were in the "ditch"; so I know that there are lab tests that can check the ER/PR levels. Whether or not it has to be a naturopath, I don't know. I didn't ask my MO but will shoot message to his office tomorrow to ask if he has access to such in depth hormone testing.

  • Grazy
    Grazy Member Posts: 231
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    Sunnyone - will be very interested to hear what your MO has to say today. I woke up with stiff hands again during the night. I wonder if everybody has one part of their body that "suffers" with an AI. Haven't felt any joint pain anywhere else (yet); I think I've been on the Arimidex for six weeks now. Good luck with the Zometa infusion - very interested in hearing how you make out with that.

  • BethL
    BethL Member Posts: 74
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    hi everyone! I've been on anastrazole since late January, along with Lupron and priolia. I did pretty good for awhile. Now my hands and feet hurt so bad. I've gone to using fat pens at work because it hurts to hold a normal size pen. But what's worse are the feet and ankles. I can barely walk because of the pain sometimes. It's the top of my feet and front of ankles that hurt. I don't want to come off this med, I did tamoxifen ten years ago and had recurrence.

    I'm interested in hearing if anyone had luck with something for the pain. I'm taking d, calcium. I've heard Claritin mentioned. Does that really work? How much do you take

  • Grazy
    Grazy Member Posts: 231
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    Hi Beth -- My MO recommended Glucosamine (my pharmacist said it has to be Glucosamine sulfate) for joint pain while on the AI - I've been taking it since the day I started Arimidex and I haven't had much in the way of joint pain yet but it is early days so who knows if it will help as times goes on. Has anyone's else's doc recommended that? The daily dosage is 1500 mg and I take three pills per day - 500 mg each - at breakfast, lunch and dinner.

    People do seem to swear that Claritin helps with joint pain so I'd say there's no harm in trying it to see if it helps you! I'd sure give it a try.

  • dtad
    dtad Member Posts: 771
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    Sunny....to answer your question yes there are tests to check our hormone levels but most MOs don't run them! Its mind boggling to me. How can you prescribe an anti hormone and not test levels before during and after? IMO its because most MOs know very little about female hormones. I think there should be an endocrinologist or at least a gynecologist on the team that would be in charge in testing our hormone levels. Ive even heard of MOs not testing to see if women are menopausal or not before deciding which anti hormone to prescribe! Its a huge gap and maybe even malpractice! Good luck to all....

  • teach6
    teach6 Member Posts: 16
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    I started Anastrozole 1mg last night, 1 day after finishing 33 rads. Asked Dr. to test for pre or post menopausal even though I was experiencing hot flashes from chemo-pause.( Showed post at 47 years) the hot flashes are extreme- will they get worse on Anastrozole? I also had a bone density test which shows osteopenia. Told to take calcium. I see others are getting injections to help with bone loss- can you share more about this? My doctor hadn't mentioned it. How soon can you have this after active BC treatment?I have the summer off to get my mind & body ready to teach again.

  • Girl53
    Girl53 Member Posts: 41
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    Hi, all. Glad to hear so many are doing pretty well. I am doing just okay. Started anastrozole March 31 and didn't notice anything unusual at first...in fact, I felt a little better than previously, and was psyched and so glad. In last week and a half, though, am noticing foot pain, some hand pain and stiffness, and my shins/legs just feeling "funny." By evening, it's pretty distracting.

    Went for my survivorship counseling session yesterday, and clinician told me that lots of her patients on aromatase inhibitors take a lot of Advil for the discomfort, and some start on Prilosec due to ulcers due to the Advil. Yikes.

    Question is, anybody reading this had the experience of the joint/muscle pain for a few months or a year, and then the body adjusts, and the discomfort goes away? Or have you read of others having this experience? Wow, am I hoping that's what's in store for me. All insight welcome.

  • brutersmom
    brutersmom Member Posts: 913
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    I have been on anastrozole for about 7 months. My first 3 months on Anastrozole were uneventful. I tried Femara for one month after an allergic reaction to Anastrozole when the pharmacy switched manufacturers to Accord. Femara triggered sever night sweats and other very uncomfortable side effects so I switched back to Anastrozole by Teva I still have night sweats on Anastrozole but the are not as severe. (Didn't have them before Femara). My concern is I have developed pain in my hips when sitting along with a burning sensation down the tops and side of my thighs. Mostly when sitting. Walking and standing relieve it but as soon as I sit down it is back. Both sides. I have also started getting leg cramps. I am taking magnesium and turmeric curcumin. I also take Claritin for allergies right now. I see my regular doc next week. I was wondering if any one has experience the hip pain and burning sensation and found a solution. Standing and walking all the time is tough as I have to drive a lot for work.

  • Smurfette26
    Smurfette26 Member Posts: 269
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    BethL I was like you on Anastrozole. Could barely hobble. Couldn't hold a pen. My Oncologist put me on a "drug holiday" for a couple of weeks. Within a few days I noticed a big improvement. My Onc was happy to prescribe a different AI but after talking to my breast nurse I decided to restart on name brand Arimidex. The change is astounding. I have the odd slight ache or pain but nothing like it was. Although generic brand drugs have the same active ingredients as "name" brands; the fillers are often different. It can be the fillers that cause some of the side effects. I hope you get some relief soon. QOL is so important. You shouldn't have to endure pain like that. Hugs Donna.

  • jnu3
    jnu3 Member Posts: 56
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    First regarding testing for hormones - check with a local naturopathic physician. The blood work is in detail and complete.

    I have read through the posts and took the advice of once you get up in the morning to get moving. I try to do at least 10 minutes on the stationary bike. I know it should be longer but .......

    I started my Anastrozole March 19 the day after my 16th rad. I take my Anastrozole in the morning along with a probiotic, a CoQ10 100mg, 2 B complex and a Caltrate 600/800 chew. My RO had me stop the CoQ10 while undergoing treatment because it promotes healing and healthy cells but had me restart when all was done. The Caltrate 600/800 chew I take morning and evening per RO recommendation. In the evening before bed I take 2 2000 D3's, my second Caltrate chew and my Atorvastatin. I had a dexascan and it was basically normal.

    Do not use Ibuprofen in excess - it will slowly damage your kidneys. I have aggravated my kidneys minimally and it is believed to be related to use of ibuprofen I took due to pain from osteoarthritis in my knees. I very rarely take anything other than an occasional aspirin these days. As I have stated in previous posts, I had a total left knee replacement May 2012 and am, finally, going to have the right knee total replacement.

    I am not having any more pain or discomfort than I was having prior to the diagnosis or prior to starting Anastrozole. We all have a tendency to become stiff and achy. I, myself, have not been as active as I could be or should be having suffered injury to my knees in 2003, BUT that is no excuse. I wish I had access to a hot tub or a pool because that would really be a dream exercise solution. I did get myself a deep soaking tub. I wasn't able to get into it or maybe it was more I wasn't able to get out of it due to my knees and a little excess weight. In my case I found a stool that I was able to lift my hinder regions onto which gave me enough boost to stand and get out of the tub. That soak is so deep and soothing that if I had had to I would have gotten one of those seats they now have that will raise and lower you from the tub.

    There were a lot of days prior to the Big BC at 64 almost 65 that I felt so old. I lost 60 pounds, put on 20 and am working to lose that 20 again in anticipation of my surgery in five weeks. I am looking forward to the new right knee.

    Will be applying for my Medicare come Fall. Sometime after my full retirement date or shortly thereafter am looking forward to a long life of road tripping with my wonderful other half. He is not the best passenger (I am worse) but I wouldn't travel without him. He will just have to forego his green thumb once in a while to satisfy my need to wander.

    Here's to our hot flashes; may they be quick to pass.....

  • Sunnyone22
    Sunnyone22 Member Posts: 61
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    To all who have commented here about AI use, associated pain, etc. thank you! I feel more comfortable about my AI actually working despite the absence of SE's.

    I saw my MO today (before Zometa infusion) and asked her if my lack of Femara SE's might be an indicator of it's ineffectiveness. She said absolutely not in my case. She said she has no reason to believe that my body isn't absorbing the medication, I have a normal gastro-intestinal system and she is certain the drug is being absorbed and utilized. She DID say that she's had patients who have few if any SE's initially but then develop them later (6 months or more) after starting on AI. So I guess I have that to look forward too. Sad

    About the Zometa injection today.....................it was easy, really. Chemo nurse first inserted a needle/port into a vein in my wrist. (My forearm veins roll around too much to be of use in IV's). After drawing blood to test for kidney function (which MO monitors throughout these infusions), he then connected the port to an IV bag for the Zometa infusion (which took about 20 min). Then he switched bags to one that appeared to contain simply saline solution. He told me he was putting me on the "rinse cycle"! That one went in in about 15 minutes, then I was done! Toughest part for me was sitting in the 'chemo lounge' for an hour with an IV in my arm. Sadly, there were men and women in there who looked like they were suffering and I felt so bad for them. I was lucky to have a good friend with me who distracted me by chatting while I sat there coloring an adult coloring book! She made me laugh out loud a couple times and I immediately stifled my laugh as I wanted to give others in the lounge peace and quiet. It all seemed to go by very quickly. No pain, no burning, no SE's so far. I went into today's treatment super hydrated (at the chemo nurse' advice) and continue to stay hydrated. Hopefully that will stave off any SE's tomorrow. Just to be safe, however, I didn't schedule anything for tomorrow. Next appointment will be in November.

    I will adjust my head around this "no SE's = no drug effectiveness" hole I had put myself into. The drug is working but not causing SE's. I need to be grateful and just move on. And as far as Zometa - it's no problem so far. I'll keep you posted if SE's follow tomorrow or the next day.


  • dtad
    dtad Member Posts: 771
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    jnu3...thanks for the info. on the naturopathic doc. However I still say that someone on our primary breast cancer team should know more about female hormones and test our levels. It should not be a guessing game! Good luck to all.....

  • Girl53
    Girl53 Member Posts: 41
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    I noticed someone else here mentioned the word "burning." Part of discomfort in hands, feet, and legs is sort of like burning: it feels "warm" or "hot" and kind of "thick." Not exactly tingly. The word "neuropathy" seems to fit.

    Trying not to get upset and jump to conclusions. Will continue good self-care and if SEs get worse, talk to onc about maybe trying another AI.

    About a year and a half ago, before BC and when almost at menopause (I'm 53), I noticed significant joint aches and stiffness, and this lasted for eight or nine months. Then it went away. Am wondering if my body was adjusting then to lower level of estrogen, and now the same thing is happening again, due to AI, and maybe again, it will go away. Here's hoping!

  • BethL
    BethL Member Posts: 74
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    Grady- thanks for the glucosamine suggestion...I'm getting it today and I am gonna try Claritin. You're right, can't hurt.

    Smufette- qol is important, but I'm so afraid to make a change. Yesterday I went out with some friends and was in so much pain , it was ridiculous hobbling around. I wear clogs at work and while there is some pain when I first get up, it's not as bad compared to other shoes. I really wish clogs looked good with capris!

    I see my onc again in July for my next Lupron and prolia shots. If my interventions don't improve things, I'm gonna have to try something else.

  • Grazy
    Grazy Member Posts: 231
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    Good luck, Beth. I truly hope you find some relief soon - keep us posted on what works/doesn't work for you.

  • Sunnyone22
    Sunnyone22 Member Posts: 61
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    Quick follow up if you're considering Zometa infusions to counteract bone issues with AI's - I had infusion on Friday around noon. SE's (strong flu-like aches for me) started about 12 hours later. Yesterday, the day after infusion, I was VERY achy - Tylenol and a hot bath helped a bit but I suggest laying low for a day because aches were significant. Today (day 2), I'm almost back to normal. Don't forget to hydrate - before AND after!. Next infusion in 6 months.

    This treatment is doable and considering I was facing osteopenia in my femur bone neck (near hip), worth it for me. I plan on continuing my AI (Femara) for as long as my MO feels it's working (5yrs? 10yrs? longer?) and am glad Zometa offers protection from the AI bone SE's and maybe even a deterrent for bone mets.


  • BethL
    BethL Member Posts: 74
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    I am on prolia every six months. Assuming the benefits are similar? My onc put me on it after a study revealed decrease risk of recurrence with an AI. When we sat down to discuss chemo vs no chemo, it looks as though the benefits, for me, we're equal. So it seemed like a no brainer. However with the side effects I'm dealing with now, I don't know.

    Started Claritin and glucosamine tiday. Thank you for the suggestions. Seems Claritin keeps me up so I may be adding some Benadryl at night time to the plan.

  • Grazy
    Grazy Member Posts: 231
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    Beth, I look forward to hearing if you notice any difference as time goes by. I drink a lot of water too - not sure if that also helps with joints, thinking it can't hurt. I really do belief being massively hydrated really helped my skin with radiation. When I went to my pharmacy to purchase the Glucosamine, the pharmacist told me to make sure I grabbed the "sulfate", as he said that's the one I want to take along with my AI (I initially grabbed a different glucosamine off the shelf and got confused when I realized there were choices so I checked with him and explained I was starting Arimidex). Anyway, it's what my RO recommended; I have NO idea if it's going to make a difference, but it's worth giving it a shot. If I start feeling joint pain, I'll sure be trying Claritin (and whatever else is suggested).

    I've been on Arimidex for about six weeks and while I'm not experiencing joint pain per se - except for stiff hands very briefly twice - I do feel as though I'm emanating a lot of heat off my body here and there throughout the day and night!! More of a constant heat for a few minutes than a hot "flash" -- Phew! -- but having been in menopause for a few years now, this particular side effect hasn't thrown me off too much because I was already used to that sensation.

  • jnu3
    jnu3 Member Posts: 56
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    Awe the warm/hot flashes; yes the memories from menopause have been reignited with Anastrozole. Well into my third month and all seems to be fine with this minor exception. I also believe in hydrating; keeps the kidneys functioning and everything else working.

  • Grazy
    Grazy Member Posts: 231
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    jnu3, glad to hear it's 'so far so good' for you on Anastrazole as well, with the exception of the heat! Off to drink another big glass of water now!

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Blood tests for hormonal levels are certainly available from any doctor. The report tells them the results - they don't have to interpret them, so maybe some of your docs are just lazy?

    jnu, I hope you aren't working with a nauturopath for hormone levels still! It could really screw up what the AI's are trying to do. We are TRYING to screw up our hormone levels by taking an AI so there is no point trying to contradict that.

    Claritin is working for me, perhaps if you took a Claritin-D it would make you drowsy, or change the time of day you take it.

  • jnu3
    jnu3 Member Posts: 56
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    Oh no - my initial contact and work with the naturopath was December 2012. My hormones were in the "ditch" and I was hoping to kick start my love life. BC was not a mention or thought. I had had a spot watched and had a biopsy that was not a biopsy. They put me on the table, found the spot, insert the needle, injected the anesthesia and the set up the biopsy but could not find the spot. I call it my biopsy that wasn't a biopsy since everything was done except being able to locate any spot to biopsy. Looking back, maybe having a surgeon do a biopsy would have found the spot, but........

    I had mammograms every three months and every six months; the spot did not change. Since there was no thougth of cancer, I was working with my naturopath to elevate my hormones and kick start my sex drive. My last mammogram before BC day was February 2015 and there was no change so it was decided to go to my usual mammo date for both breasts. In the meantime, Providence got the 3D tomo machine in April (I wish they would have called me in then). It was October 29, 2015 when I had usual mammo (because my insurance wouldn't allow me to do it earlier in October) when they found spiculated lesions coming off the same spot that had not changed. My BC was Invasive Lobular Carcinoma (it is a beast of its own name ILC). I did not have a lump or any other outwardly sign. Thank God for my radiologist and our persistence and my decision to listen to my inner voice.

    I am here, I am well and I look forward to many more years of happiness and sharing my life with my other half who has been by my side.

    The mention of naturopath was to gain access the actual hormone levels that the MO, RO and SO do not access. Love to all and God bless.

  • dtad
    dtad Member Posts: 771
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    barbe1958....IMO if we are hormone receptive our hormone levels should be checked no matter what kind of doc is running them. Unfortunately most of our bc docs don't test them so we have to look elsewhere. Taking anti hormones are suppose to lower our estrogen levels not screw up all of our other hormones. This does NOT have to be a guessing game. It's a huge gap in our overall care. Some docs don't even test when deciding when we go from pre menopause to post! I think its because most MOs know very little about female hormones. So speak up. We can do better. Good luck to all....

  • jnu3
    jnu3 Member Posts: 56
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    And I will be checking with my naturopath to make sure that my hormones are back in the ditch - flat lined and all of the above. What a pain.......

  • Sunnyone22
    Sunnyone22 Member Posts: 61
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    To all who are on AI's and experiencing wrist/hand pain, here's a 2013 article about what we're experiencing, why and some other interesting facts - including a possible correlation between SE's from AIs such as wrist/hand pain and lower BC recurrence rates. Written in plain English, or at least plain-er than most scholarly articles, it's interesting and informative - at least it was for me.

    http://annonc.oxfordjournals.org/content/early/201...


  • barbe1958
    barbe1958 Member Posts: 7,605
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    Well, we bloody well better get lower BC recurrence! That's why we're taking the AI's!!

    SickTired

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Interesting that the article says the joint pain has to be symmetrical....why????? And also that the pain improves upon use and exercise. First you have to be pain-free enough to even WANT to exercise!!!!

    I didn't like the line: Furthermore, even those with metastatic disease have a 23% 5-year survival on average

    I kind of thought I had longer than that.......

    Sad

  • Girl53
    Girl53 Member Posts: 41
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    Sunny: Great article...thank you. Will keep it on hand. Am exercising, eating healthy, managing weight, upping my vitamin D, use fish oil and glucosamine, and have bought a wooden TheraFlow foot massager/roller that feels good on arches and heels....aaahhh. (My feet are more painful than hands). Foot discomfort is definitely worse at end of day, after a work shift and two hour-long walks with my wonderful almost-two-year-old standard poodle. It feels good to turn in at decent hour and take a load off...I have renewed gratitude now for bedtime LOL. Maintaining an informal pact with myself to use an NSAID every few days, not daily.

    Interesting that article said they don't know if arthralgia is main driver of AI non-compliance among many women, or whether hot flashes and vaginal dryness prompt some to stop. For me, hot flashes aren't really any worse than they were before I started anastrozole. Re: tissue dryness, my onc's office said I qualify to use a topical estrogen cream, but I'm not sure want to do this. Meantime, have been using Carlson Vitamin E suppositories. These don't re-plump the tissue enough for pain-free intimacy, but they keep things comfortable for other activities.

    Is anyone fortunate enough to have regular, or even an occasional, body massage that helps with AI pain?

    Down the road, will consider asking onc to try another AI if joint pain symptoms don't moderate.

    Still would love to hear from ladies who have been on AI for a significant period, and found that their arthralgia symptoms significantly diminished as their body adjusted. My breast surgeon said yesterday that this can happen. Anyone??

  • Sunnyone22
    Sunnyone22 Member Posts: 61
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    Like you Girl53, I'm eager to hear from BCO members who HAD serious AI side effects that went away. (Hope springs eternal......................)

  • Acatt9
    Acatt9 Member Posts: 1
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    I am taking Arimidex - started July 2015 - all was well until January 2016 and I started having carpel tunnel syndrome in right hand and hip bursitis I right hip. The carpal is gone finally but the hip pain is worse, had a cortisone shot no relief, doing PT, take alleve and tried acupuncture no hElp. I am very frustrated- doctors won't agree that is the Arimidex. I am also doing Zometa 2 x yr for 3 years(2 done)

    Has anyone's else had these problems? I was diagnosed in Oct 2014 - lumpectomy and node disection 5 nodes cancer - chemo A&C and taxol and 6 weeks radiation - I just turned 60

    I am glad I found this board