For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Thanks everyone for your responses. I'll keep moving ruthbru.
As soon as I find out my bone density results I'll speak to my MO Peggy.
lago nice to know there is other meds I can try. Thanks for the info.
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Welcome to you Louanne
I hope you will find some answers here.Meljo, my BFF was going in for IVF and told me all about the million pelvics. Actually, I did have one pelvic 20+ yrs ago because I was young and did what everybody told me. I fainted and turned blue on the table from humiliation and shock and they had to stop. Thank god...most terrible thing EVER! Never again LOL!
Maasai123 I was Dx'd nearly one year go with Stage IV ILC and so far haven't done anything and no one can believe it when I tell them I have the Big C. I already had this beast in me for 8-10 yrs by the time they saw it. It's very slow growing and though I DO have days where I don't feel well and my mets hurt, I'm doing okay. I probably have a few years left.
Peggy, I wanted to tell you I got word today that my ins did approve me to go to UCLA! I am so excited because they have an integrative oncologist there who I'm sure I will be able to relate to. If I can find a tx that doesn't impair my QoL I'll take it, but otherwise I'll leave this monster alone. It's been good to me for leaving it alone.
Maasai, only you can make a decision like that. The decision has to be for you, first and foremost. I wish you all the best with whatever you decide to do!
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Cee, very glad that you are now able to go to UCLA. Hopefully they will have exactly what you need there. Fingers and toes crossed. Keep an open mind about treatment options. I'm glad you're feeling pretty good.
HUGS!
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Louanne, no matter what your bone density test shows, ask about Fosamax or similar drugs to protect your bones. AIs apparently can be hard on the bones and we all want to avoid that. Of course, your MO will know what is best for YOU! Just make sure you ask and have a conversation about this.
HUGS!
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I have a different view from Peggy about the bone building drugs. Mine is that if your bone density is in the normal range; ask (as I did) if you can have the DEXA yearly (instead of the usual every two years). Through exercise, diet (and luck) my bone density stayed in the normal range throughout the 5 years without adding another drug (and it's potential side effects) to the mix. The reason I wanted the yearly scan though, was so if the numbers would have gone south, I could have added something right away before things got too bad.
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Someplace in my papers I saw that I should have the baseline DEXA. I did. Then in 2 years another. I did. Then if there is bone loss, yearly is recommended. Haven't passed that year yet. This could be medicare guidelines, not sure.
There was some loss, MO talked about upping my D3, but that level is in range. She also mentioned infusion, or the pill. Will discuss this more this month.
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Ruth, I already have some osteopenia so Fosamax was appropriate in my case. I do think that it is necessary to ASK about such drugs and if they are right for you. You did well without them and many women do. For me, they are needed. I hope I didn't come across as saying everyone should take them. If so, I am sorry. But the conversation about them should occur. Each woman and her MO need to decide what is best for HER. Thanks for allowing me to clarify what I meant, Ruth.
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SpookiesMom, my MO also said I would have another DEXA scan in 2 years so I'm like you in thinking that it is a Medicare thing. As with so much in BC, there are differing opinions as to what do about bone loss. Makes the mind spin, doesn't it?
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Yes, it is something to definitely be mindful of, and, for sure, a topic to continue to discuss with your doctor throughout your time on an Al.
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It's not just medicare, it's all insurance or some type of guideline for it. I asked to do it yearly and the Mo and PCP said it wasn't necessary. I have osteopenia. My Thyroid doctor did say AFTER the next desnity test, she would be willing to help me try one if the other two doctors still were dragging their heals, but not until then....0 -
It was my GP who pulled some strings (knew how to write things up so they would be covered by insurance) to get me the yearly DEXA.
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I'm assuming that I will be doing it yearly now. Something else for the list to ask. It's easy, hardest part is getting this creaky body off the table. LO
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One of the few medical tests that doesn't hurt or make you take off your clothes!!!
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Cee67 thanks for the welcome! My brother was diagnosed with stage 4 cancer. The surgeon gave him 6 months with chemo. I was so hoping he didn't do it, just to have the quality of life, even if it was only for a little while. He decided to do it, and suffered terribly. I know it isn't the same for everyone, but, when you watch a family member go through it, it's life changing. I'm very happy I didn't have to make that decision, my oncotype was 15.
Redheaded1 are you on bone building drugs?
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An article on our main site explains what DEXA Scans are. They are best with a baseline scan to reference against. They are a valuable, painless test to have. See Measuring Bone Health .
Keeping Calcium in the bones is so important.
The Mods
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Mods the information from 2007 that you posted about Vitamin D is way out of date for women taking Al's. The Measuring Bone Health page is rather out of date too or just lacking. Most osteo guidelines mention doing bone density testing for people on certain medications that can lower bone density. This one does not. Kathy
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Kathy044, doesn't this article address bone loss Arimidex bone loss ? Or are you saying that DEXA scans are not a necessary part of the regimen for Arimidex? My MO certainly seemed to think so. Or are we talking about two different things?
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Yes Peggy, it does, but the mods posted links to two different articles, neither of which I found to be terribly helpful to the discussion. Kathy
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Okay. I just wanted to make sure we were on the same page. Thanks, Kathy!
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I didn't check the links, but appears the info needs to be updated.
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We have removed the 2007 Vitamin Supplements article link, but left the DEXA scan one for an explanation of what those scans are.
The Mods
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Thanks Mods!!
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Thanks mods, I am not trying to be critical, and I know you care about BCO, and I do too, and that is why I responded in the first place but I suggest that you check the Measuring Bone Health article a little closer, especially if being used on a cancer information site. Having back pain is NOT a reason for a DEXXA scan, though it might be for an X-ray or bone scan. I'm no expert, but I do have osteoporosis and have done a lot of reading on the subject. As I stated, please just check it out. Here is another article on bone density testing that I liked and that is simple and easy to understand and could be used for comparison.
http://www.nlm.nih.gov/medlineplus/ency/article/007197.htm
Kathy0 -
Luanne, no, I am not on any of the bone strengthening meds yet. I am very anxioius about NOT being given one, but my ONC and PRIMARY seem to feel its not needed yet. I talked a bit with my Ortho yesterday when I had my cast removed, but I don't think he wants to weigh in on it. My Thyroid doctor seems most willing to help me IF the scan in JAN 2016 shows more loss. I will always wonder if tis fracture was avoidable without the Arimidex.0 -
So happy the cast is off, Redheaded. That should make lots of things, such as showering and washing your hair, a lot simpler. Cartwheels too. It does seem nuts that nobody will give you a DEXA scan. Most nuts is that your ortho doesn't even want to address that issue. There you are with a broken wrist and on an AI. Seems perfectly natural to me that he'd want to know a little more.
Any chance your x-rays show nice, dense bones? I don't know whether that is one of the things they can identify, but it seems possible. It also seems that if that were so, one of these docs would have mentioned it.
I reached my two-year anniversary on AI's this week. Very happy to have that behind me. Not so happy about the next three (or maybe more) years, but if I could do two years, I'm sure I can do the rest. Well, sort of sure. These poor oncs. Probably most of their day is spent patiently listening to us whine over and over and over again, and constantly reinforcing our commitment to the durned pills. Personally, I prefer being the whiner to the whinee.
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At my original dexa scan, they said I had osteopenia... that was when I started anastrozole - I also take calcium supplements... now its been 2 yrs and I m getting another dexa scan next month.. I can only hope its all the same and not showing anything worse.
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Fingers and toes crossed, IAMNancy, that your DEXA scan is good!!
HUGS!
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Kathy and all, thank you for your diligence! As we of course are not experts on this -- and you probably know way more than we do! -- we're passing along your notes to the editorial team and our medical experts, requesting a review of this information, and an update, if necessary.
Thanks again for your help!
--The Mods
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Redheaded1 I was scanned every year till I finally ago diagnosed with osteoporosis. Now on Prolia and scanned every other year. My oncologist doesn't treat osteopenia BUT if I went to the Reumatologist when I was so osteopenic she would have started me sooner.
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Red, one of my docs tried to hang my broken wrist on the AI and osteniapenia. I don't. In my fall, a 20 yo would have broken bones too, and it's a wonder I didn't break more bones!!!!
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