For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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bjb...I also congratulate you on your tenacity to stay on the aromatase inhibitors. I just wish more of us would speak up so they would put more research into better treatment options. I'm not disputing their importance. I just don't think we should not have to decide between QOL and recommended treatment options! i'm happy for those who do well on it but the fact remains that only 50 percent of women complete the 5 years due to SE and that is just not good enough! Good luck to all navigating this disease.
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anyone taking 2000 units of D?
I have been taking one D3 pill of 1000 units, but with some of my joint pain SEs my MO thought it might be due to low D versus Arimedix SE! so I am upping to 2 pills, 2000 of D...anyone else doing that?
In my most recent blood work my D level is at 31...normal is 30 - 100, so while not D deficient, I am D at the low side...
Don't know if there is any SE to too much D???
Any thoughts???
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I feel strongly about keeping Vit D levels much higher. I take 50,000 units twice a month to keep mine in the 50s range. I also have osteopenia and on Prolia as well as the AI
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after my hysterectomy I was started on 2000 IU. at that time I was at 38. my diagnosis was in early 2015. in June of 2015 my gyn increased it to 4000 IU knowing that I would be losing when treatment was over and I would be put on an AI. 12/2015 is was at 41 and in 9/2016 I was up to 54. it's about the only thing that I'm pleased about. I've wrestled with all of the AI's trying to find one that I can tolerate. Ask your gyn or onc about this. there are women that take a 50,000 dose once a week. it's worth asking the doc's about what they think.
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Okay, thanks for the quick responses...I realized that I was a little off in my calculation as I take a women's multivit that has 1000 units of D, plus since last year have taken an additional 1000 D individual pill...so I am already at 2000 and only hitting the mark of 31 on the bloodwork.
So this will bring me up to 3000...but given folks are at 4000 and 50,000 twice a month, I guess 3000 is okay! Who knew!
That is why it is always so good to have everyone to ask, thank you!
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I take 3000 units of D3 daily and have for several years. You might also consider adding regular (not "D") Claritin to your pill mix if you are having stiffness/achiness. It does help.
HUGS!
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I take Calcium with D, but i also take omeprazole for reflux, so have been taking it early and the Calcium/D at night...
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Thanks Peggy and Ann -- I will up my intake to 3000 and have another blood draw in a month and see how that goes...
Peggy, I have seen you suggest Claritin before -- I actually take Zyrtec for seasonal allergy relief...is it Claritin or just an antihystemine?
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TrmTab, I think it's Claritin. I take Benadryl mostly because it actually helps my allergies better than Claritin. But I notice that I move easier when I get out of bed in the morning if I'm on Claritin. It's too bad I can't take both!
HUGS!
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Vitamin D-----I have taken 5000 units a day for years and now my thyroid doctor says I am "low" she would like to see it in the 50 range and so I am taking 5000 m-f and 10,000 on sat and Sunday.
My month long break from Arimidex didn't wipe out he pain in the wrists and feet completely-so I have been off another 7 days and I am seeing the onc. tomorrow. I am afraid to go off the drug at 2.5 years, although he thinks my risks are small. I am also uneasy with the every other day approach, but someone said the 1/2 life of the drug is 50 hours, so what should I do? the Claritin trick didn't work, so maybe I will discuss prescription pain medicine with him. I am allergic to NSAIDS and anti-inflamatories.
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Red, that's rough that you can't take NSAIDs or anti-inflammatories. Have you tried something like Zostrix for the pain? It's a creme. I sure understand why you hesitate to go off AIs. Have you tried Aromasin? I hope your onc comes up with a solution for you!
HUGS!
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Hi All:
I started taking Arimedex November first and so far/so good.I met with my new medical oncologist this week and I'm having some doubts about both her and her recommendations. She informed me my DX scan revealed osteoporosis (Femoral neck -2.9) so she directed me to start Prolia infusions after being cleared by my dentist. I'm wondering if Prolia is the best choice (vs. Boniva, etc) given its s/e issues. I am also feeling like she didn't provide more lifestyle recommendations in addition to the medication. When asked about diet (for breast cancer in general and osteoporosis) she just shrugged it off saying there wasn't enough good research to make specific recommendations. She didn't get off off her chair to examine me (the nurse took vitals) and she asked a few questions, reviewed the DEX scan results and then just handed me an information sheet for the prolia and that was it.
I had a wonderful breast surgeon and radiation oncologist thus far who provided more than this "cut and dry" approach. Is this common with medical oncologists? It seems she'll just order blood work, Prolia infusions and that's it.
I'm seriously thinking about getting a second opinion from an endocrinologist who might take a stronger interest in how the arimedex and Prolia are impacting my blood sugar and thyroid since I'm borderline Type 2 diabetic and in remission from Graves Disease. I'm also wondering f they would recommend Prolia first.
I also thought the medical oncologist would be more of an ongoing support. I don't need my hand held but some positive encouragement instead of a cold stare might be nice.
Is my experience typical or are some of you getting more medical attention/information/support?
Hope you're all doing well!
Marcella
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Marcella, first, if you're not comfortable with your MO (which it appears you are not), then find another one. You'll be with that oncologist for 5 years or more and you need to have confidence that he/she has your best interests paramount. That being said, it is possible that Prolia might be the best choice for you. But for heavens sake make sure your insurance covers it! If you are in the US, it is very possible that you will have to start with other much much cheaper alternatives. Prolia costs a fortune. Many insurances don't cover it. You may have to fight to get it. I can't recall anyone getting Boniva here. I take Fosamax. There are some options. You definitely should discuss the best options for you with your other doctors. Oncologists don't always know how drugs impact other conditions you may have. Good luck getting it all straightened out. And fire that MO.
HUGS!
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MarcellaPa, I changed my MO... he was all for chemo and when i said no.. he just said that's it... and just didn't seem to really want to do much.. fishy handshake, like he really didn't want to be touched, but had to... My new MO is real good.. said at my age 67, the risk for chemo outweighed the benefits... and my tests took me right down the middle, so it was my choice too, I stayed with the rads and no regrets... now I'm 11 of 20.. counting to the Finish!
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Good for you IHGJ, you sound so close to my diagnosis only my Oncotype was a little lower. Hope you are doing well with your radiation. Hang in there I think you made the right choice.
Helen
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Marcella, your MO sounds just like mine, maybe the same person! lol. I'm no longer seeing that MO.
My bone density test done right before starting anastrazole showed osteopenia already, even though I was on tamoxifen for almost 2 years, had been in menopause for only a little over 2 years, and had a pretty active lifestyle at the time, so that was rather surprising. MO wanted me on Prolia just for that, I read up on it, and declined.
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Hi.
I wanted to chime in on the recent posts...I was diagnosed early summer 2016 and spend the summer with mastectomy, fills and implants..finished- yay! I loved my breast surgeon and my reconstructive....so responsive and open to involving me and answering my questions. They gave me hope. My MO (oncologist) was another story. Although she is 'the best' in my city we did not connect and I even got the feeling that she didn't like me (can u imagine!). During my appointments she would mostly look at the computer screen reading results or wouldn't meet with me at all but call me late in the evening when I was busy with family matters or out so I never could focus on her counsel. I dreaded going to see her because I did a lot of research about BC this summer and had (intelligent) questions and wanted to weigh my options. She would comment on how many questions I had and wanted me just to take the AIs (despite my osteopenia) and to do infusions of intense drug Zometa without question. At one point my husband asked if I just bit the bullet and took the AI for 5 years if that would mean I would be cured of cancer and she responded 'No, she'll be cured of cancer when she dies from something else!" I'm sorry but WTF! I felt so depressed and scared and alone…after I picked myself up, I started to ask everyone I know about MOs and decided to go to a Cancer Center in my city where doctors work with researchers and are young, dedicated and very hopeful about the future for surviving breast cancer. I found a young, smart-as-heck doctor and she sat patiently with me to go over my diagnosis, options and agreed that with my type/stage of cancer, a prudent course of action would be to take tamoxifen for 2 years while I focus on exercise/diet to build back my bones and then we'll see if I even need to go to the bone-threatening (and according to her less tolerated AIs) for the last 3 years. In fact, she suggested that 2 years from now there likely will be a better test to evaluate whether to stay on tamoxifen or move to AIs.
Apologies for the long post but wanted to share my story so hopefully others can benefit. Btw, I've been on tamoxifen for a month and although early days, so far so good and not having any major SE other than sore feet in the morning (which already was having from menopause). Taking a good brisk walk with weights for 30-45 minutes every day plus a little stretching really helps my bones and joints feel good.
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Marcella--you d idn't say where you were from----sometimes you can get great referrals from the ladies on these boards. I'd opt for interviewing someone else if it was me. Womenare intuitive and if your gut says this doesn't feel right, it probably isn/t. Mst insurance won't pay for the higher priced bone drugs unless you fail on the Fosamox or Boniva first.
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PS. My new MO told me that the Prolia shots every 6 mos where just as good and more tolerable than infusions if you go that route...and someone from prior post mentioned that Prolia has a direct to patient advantage pricing so worth looking into that.
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jpBCfree--This is the test your doctor might want to look into for you down the road. I'm getting it done next fall when i'll be 5 years out. Can't remember if I posted this for you already. (Damn Tamoxifen!)
ER+ Breast Cancer Recurrence & Continuing Treatment | AnswersBeyond5.com
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Saw the Oncologist again this a.m. He says stay off the anastrazole another week-then start back EVERY OTHER DAY. said I was clearly having issues with the drug building up and he wants to see again Dec. 16th. Said we still have Tamoxifen up our sleeves if this doesn't help. But he really wants the Arimidex over the Tamoxifen even at 1/2 dosage. I asked him about Tumeric and he said I could try it, but that only about 2 out of 10 women will see results. Told me it was important for us to talk and work thru this and not to feel like I was being a pest with my concerns. Such a great guy. I asked about magnesium and he said it wouldn't help. (nutritionist told me it wouldn't hurt, and she said to get my Vitamin D up around 50--she told me my medical group had recently lowered their "normal" threshold and it was too low! thank heaven I ran into her. My thyroid doctor who is with a different group told me my level wasn't ok either, and she increased that for me in Sept. Now I know why.
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I am almost 10 months PFC, and the weirdest thing has happened. The hair on my legs, which went away after chemo and then came back, has quit growing as fast. It reminds of the way it was during chemo. I have not noticed a change in my head hair. Also, I have two toenails which have turned a bruised color and look like they might fall off. (I didn't lose any nails during chemo or directly afterward.) Anybody have this happen? Could this be a result of anastrazole which I've been taking for six months?
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Brithael-I don't know the answer, but the leg hair thing isn't a bad deal. I stopped growing hair from my radiation (under my arm) and I am now doing it, but not as fast. I also don't have to shave my legs as often. It could be the suppression of the estrogen maybe? I didn't do chemo.
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Brithael and Red, I'm older than both of you and way before BC, I found that my leg hair and underarm hair was growing much slower than when I was younger. I wonder if it has to do with menopause - at least that's what I think.
HUGS!
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Brit , it takes weeks to grow hair on your my legs on my AI . I am also losing hair on my head .
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Hi, I'm new here, but want some advice. I had DCIS 14 years ago with a right mastectomy and reconstruction. Then last year got Stage One Breast cancer in my left breast along with DCIS. Had another mastectomy and reconstruction for both sides. My oncologist put me on Anastrozole and I lived with horrible hot flashes for a year. They are abating, but now my feet are absolutely killing me. I hobble when I get up, can't find any shoes that are comfortable and wonder if this will eventually go away like the hot flashes, or if I should just stop taking this. I am in agony when I sit for any length of time then try to walk. After a double mastectomy I don't think I would have much of a chance for a reoccurrence, but worry about ovarian cancer. Should I hobble for another 4 years, or just get off of this horrible medication?
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my MO said to take 1200 mg calcium and 5000 mg vit D3 daily. Fixed my feet.
Hi Peg
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Labradoodle, why not see if another AI would work better for you? Are you taking the name brand or generic Arimidex? If you're taking a generic, sometimes switching to another from a different manufacturer might help or going to the name. Talk to your MO. Perhaps Femara or Aromasin might be less problematic for you. Please let us know what you decide to do.
HUGS!
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Spookie, Hello to you, too! How are you doing???
HUGS!!!
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Doing ok, SOSDD ya know?😜
I've been lurking, see you did the big move. Hope it's all good now
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