Arimidex
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Ladies, I am actually tripple negative, however, my progresterone is 2% weakly positive. My Onc. wants to put me on arimidex and Zometa. I am sort of glad to be getting any medicine at all after surgery and rads, but am not sure what to think of the Zometa, which will be given via infusion. I have to go through a whole process of getting the knowledge on Jan. 11th, but just wanted to know if anyone out there was given Zometa, right from the start. Is that to save your bones? Should I ask for a bone test first to see what levels I am at? If so what test, a bone density? I am so scared to take medications, never taken them for anything. I don't even take any pain medications, have been lucky, the body worked great until now with BC. Anyone has any experience with Zometa?
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Lovelyface,
I haven't had Zometa infusions but I have had two Reclast infusions. I had to ask the onc for this because I had read that both Zometa and Reclast have good track records in preventing breast cancer metastasis to the bones. This was onc #1. He was not at all proactive. I've since switched to onc #2 who is very proactive.
Reclast is a once a year infusion. I had the first in September 2009 and the second in September 2010. I just had a bone density test several weeks ago and the measurement in my left hip (They measure the spine and the left hip) was "normal". It's never been "normal" since I've been having bone density tests! I attribute that dramatic improvement to the Reclast. My spine bone density was slightly better than the previous test (in 2008) but not very much so.
Hope this is of some help.
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I am part of a clinical trial comparing zometa with two other (oral) forms of biphosphonates. I started zometa while I was still doing chemo in 2006. I am finished with all of the zometa infusions but I am being followed for 10 years. I never had any side effects from the zometa. I'm glad I had the opportunity to get it. My onc said at my last visit (every 6 months now) that they were finding out more and more good stuff about zometa and the prevention of mets. It makes me feel that I am doing everything I can to kill the beast forever. I had my bone density done after I had started zometa and I came out with a bone density better than what would be expected for my age (can't complain about that).
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Check out the new information on Zometa (on some threads here & the BCO home page). The latest research is saying that it does NOT lower recurrence in lower stage gals. Lovelyface, you should be getting a bone density test (DEXA) to see what your bone density is before they should even be talking about giving you Zometa or anything else (all which have potential SE on their own). I have a yearly bone density test & have been able to keep my bone density levels in the normal range (after 3 1/2 years on Arimidex) through weigh bearing exercise, lots of calcium & vitamin D (and also luck/good genetics). You need a baseline for comparison no matter what you decide to do!0
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Hi Lovelyface,
There is a thread, "Zometa, the latest news out of San Antonio" that you should read. Also read the post,"ABCSG-12 Shows Benefit for Zoledronic Acid in Early BC" under clinical trials on this site. (Sorry I couldn't copy the links.)
From my understanding, the latest results of the Azure study show that Zometa was not effective to prevent recurrence for premenopausal women. However, in a smaller subset of this study, postmenopausal women at least 5 years out from menopause showed a significant reduction in recurrence.
There is another earlier study, the Austrian Study ABCSG-12, which showed an over 30% reduction in recurrence for premenopausal who had gone through artificially induced menopause.
There are important differences between the studies. In the Azure study, the women were all premenopausal, higher stage and had gone through chemo, to name a few.
I have had 4 Zometa treatments (one treatment, every six months) that I started when I began the Arimidex. I still haven't talked to my oncologist about these recent findings of the Azure trial, but as I am well past menopause, I suspect he will have me complete the last year.
If you do decide to go ahead, before beginning Zometa, you need a bone density test. You should also discuss this with your dentist since one of the very nasty side effects is osteonecrosis of the jaw. (supposedly rare).
You need to discuss these studies with your doctor and find out why he wants you to begin Zometa. Also what is the rational for starting 'right away".
Good luck.
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Ok I am struggling! I am having so much bone/joint pain that it is almost dibilating. If I sit down even for (5) minutes I can't stand and walk without holding on to something. I laid in bed last night for over an hour wide awake needing to go to bathroom but afraid to get up because it I knew it would hurt to walk the few feet to our bathroom (it's right off our bedroom). I could feel the joint pain this morning the minute I opened my eyes and I hadn't even moved yet. Ridiculous. I am taking Aleve twice a day, Glucosimine and walking or doing the elliptical every day to stay active. I am ok while I am moving but the minute I sit down....BAM! I am not even 48 yet. I am way too young to be this old.
I am fighting so hard to stay positive and be upbeat but it is getting harder every day. I thought I would feel better once chemo and rads were over but instead I feel worse.
I am seriously considering stopping the Arimidex. I just think my quality of life is more important. I can't handle 5 years much less more of this kind of discomfort.
Sorry to unload here but it's the only place I can say this stuff. My DH tells me every morning "you can do this, just hang in there". I am hanging but honey today I only have one finger left on the bar. Ughhhhh
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grneyd5600
I would contact your onc and ask him/her if you can temporarily stop the Arimidex to see if this eases any of your discomfort. If it does, then perhaps they would consider trying you on another AI. Although they all carry the same side effects, they do not effect everyone the same way. You have to have quality of life in my opinion. Good-Luck.
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Jackie,
Can you talk to your doctor? Have you had CT scans to be sure nothing else is going on? I don't mean to be an alarmist but you don't want to assume it is the Arimidex if there could be another reason for the pain. I blamed Arimidex for a lot of physical problems that turned out to be a condition unrelated to my breast cancer. But it took me months to accept the idea that there could be something else causing my symptoms, then months to get with new specialists.
Our bodies and minds go through so much in this journey, it's a wonder we all persevere!
Gentle hugs.
Pam
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Wenweb and pj - thanks! I actually have a call into the onc. Onc did not recommend a CT scan when I finished chemo last month. He said that scans weren't recommended but rather we would wait for new symptoms. Maybe he will consider this a new symptom. We will see.
Thanks again and I will keep you posted.
Jackie
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Jackie,
Did you have a pre-op work up? Before my lumpectomy I had CT scans of lungs, abdomen; x-rays of knees where I had chronic pain; bone density test; follow up CT scans of lungs due to a spot of undetermined cause; PET scan when the lung spot would not go away; and another CT of lung. All this looking for metastasis. I have not asked for all this, it was considered routine by my onc and my insurance (BC-BS) has paid all along. As you can see in my DX line, I am early stage and I don't think anyone was expecting to find something bad. Just routine looking.
The squeaky wheel gets the grease
Squeak a little!!!Pam
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Pam
No the only pre-op done was the diagnostic mammo, the MRI, the chest xray. Once they found the amount of BC they moved on to surgery. Since my surgery in April 09 they have done a couple MUGA's and some EKG's. I asked for scans and was told by both the BS and the Onc that they weren't in my best interest due to exposure to more radiation, etc. I may just have to start "squeaking".
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How long have you been on arimidex? For sure, check out that nothing else is going on, and if nothing is, and you've just been on it a couple months, I'd say give it more time. If it's longer then you might want to consider trying something else. Keep moving, it really is the best thing for the creaks. Best of Luck! Ruth
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Ruth I have only been on Arimidex for 60 days. I will definitely keep moving. Thanks.
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Give it a couple more months anyway. I think between the end of all the horrible treatments & then starting an anti-hormonal....it's no wonder that our bodies are all screwed up and need time to find a new normal. I can remember toddering to the bathroom in the morning, being really achy anytime I sat at all, and hot flashy too. Now I am fine, (and happily one's memory fades, because I can't remember how long it took....but it was at least 6 months). So hang in there (and onto things!), it should improve with time. Ruth
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Have your vitamin D level checked. Low vitamin D causes bone and joint pain called osteomalacia. It's a simple blood test.
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Notself, thank you for the vit D reminder. I keep forgetting to take it.
I've been on Arimidex over 4 years now and my whole body seems to be aching more than ever at this point.
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Sharon, it's something about this darn winter I think. I've been on Arimidex/anastrozole for 2-1/2 years, and the aches seem more noticeable lately. I shoveled the sidewalk at my mom's house during the holidays (big, midwestern snowfall), and WHAM! The next day I could barely lift my arms, my shoulders hurt so much. Yesterday, I noticed the shower in our master BR was getting especially grungy, so I took some cleaner to it and scrubbed away the grunge. This morning, OUCH! My right hand, wrist, and shoulder (not the LE side, which I protect) ache like crazy.
I guess that "exercise" prescription is supposed to be taken gradually... Oh, and I am up on my Vitamin D and calcium.
otter
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How much D do you take Otter? Pill form?
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I take D3, which is really inexpensive and readily available in any "vitamin" section of most any store here in the U.S. (You're in Canada; is it the same there?) My Vit D3 tablets contain the "standard" 400 units. My calcium supplement -- Citracal (Ca citrate) -- also contains D3. The horse-pill Citracal tablets each have 315 mg of Ca and 250 units of D3. And there's the multi-vitamin tablet -- Centrum Silver -- which has 500 units of Vitamin D3.
In all, I take around 400 + 250 + 500 units of D3 a day. I also get quite a bit of calcium in my diet each day, but if it's a no-cheese day, I'll take more Citracal and skip the single D3 tablet. Oh, and I live in a Gulf Coast state, where I spend a lot of time outside and the sunshine is good year 'round. And, I'm fair-skinned ... all of which contribute to my Vitamin D levels.
I know that's a lot less Vitamin D3 supplementation than others here might take, and it's way less than the women on the "Alternative Therapy" forum are recommending. I have to be careful not to take too much D3 or calcium, because I have a history of making calcium oxalate kidney stones. Turns out, I've been excreting too much calcium in my urine. My med onco referred me to an osteoporosis specialist (an endocrinologist who specializes in bone problems). After the appropriate testing, that doc put me on a cheap drug that decreases the amount of calcium I excrete (thus helping my kidneys and my bones). She also told me not to take more than approx. 1,000 mg calcium (as citrate) or 800 - 1,000 units of Vit D3 each day.
My 25-OH-Vitamin D was 52 ng/ml and 1,25-diOH was above 70 at last measurement. (The 1,25-diOH was ordered by accident. It's not used to evaluate Vit D deficiency; but the high blood level did correlate with the hypercalciuria problem.) Everyone was exceedingly happy with that 25-OH level, all things considered.
otter
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D3 1,000 I.U.
Calcium, Magnesium with D3 contains:
-Calcium 333mg.
-Magnesium 167mg.
-D3 133 I.U.
That's what I have but I don't always think to take them.
Thank you Otter.
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Got a call back from Onc today - they want me to stop Arimidex for a week. If the SE's ease up we will consider options - reducing the dosage and ease it up or consider another drug. If the SE's don't ease up they are going to do some other tests (scans or such). Thanks for all the advice and suggestions. I will keep you all posted!
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Bumping up
(Edit to add~ bumping for a friend to find it.)
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My aches also have been more noticeable (also after shovelling for 3 hours) and I attribute that to reduction in my exercise (from 6 days a week to nearly 0 - but I've now started again) coupled with being off my Vit D3 for about a week because I ran out, ordered the wrong ones and had to wait for a new shipment). I could have gone to CVS for some in the meantime but I didn't think it would be an issue. Now I believe it was a combination of both being off at the same time. I'm back to daily exercising and 4000-5000 IUs of Vit D3/day. So in a few days I should be on the mend. Meantime, me and advil are good friends!
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Hi jackie- as I understand, an MRI doesn't expose you to radiation, its magnets. If your sypmtoms continue, tell them you'd like an MRI to be sure nothing is going on. My Uncle is a neuro surgeon and he always says, tell them ( the doctors ) what they want to hear in order to get the proper tests. i.e. tell them you have symptoms...then, they'll have to order the tests to protect themselves and you!! well, at least if you have decent insurance to cover it. I hope you feel better.
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Shoveling for 3 hours will make anyone ache; arimidex or not!!! Be careful with it; take breaks etc. or better yet, if you can, find a strong young fellow who wants to make a few bucks!
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Thanks Bevin. I am definitely going to push for tests if these symptoms don't ease up in a few days. Good advice!
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Hi,
I started taking Anastrozole in October, and I have recently noticed that my hair is slowly beginning to fall out. This is pretty upsetting. Does anyone know if it will ever grow back? Are there supplements that might slow down the loss? I have visions of spending the rest of my life wearing a beanie.
paamboli
Dx 7/2010, IDC, Stage 1, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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I lost almost half my hair since being on Arimidex. When I had my vitamin D level checked and started taking supplemental vitamin D, the hair loss slowed down. When I had my thyroid checked and brought my Free T4 back to normal levels, the hair loss slowed even more. It has not completely stopped and my hair is very thin.
Arimidex suppresses the thyroid and most people are low in vitamin D. I suggest you get a vitamin D test and get your level to at least 50ng/ml and get a FULL panel done on your Thyroid. A simple TSH test will not do. My TSH was normal even though my Free T4 was very low. I brought it back to normal by taking supplemental iodine. With iodine I stay under the daily recommended amount to insure that I am not getting too much. I have my levels checked every six months.
I wish I had this information three years ago when my hair first started falling out. Good luck to you.
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I still swear by eliminating gluten to rid myself of the joint pain from arimidex.
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Thanks for your response. I am currently taking a Vitamin D3 supplement of 5,000 IU, and because I have Hashimoto's, my thyroid level is checked every 6 months, but only the TSH. I will take your suggestion and have my endocrinologist order the full panel, which will include the free T4. The high dose of D plus 500 mg. of Magnesium were recommended by the Breast Cancer Clinic where I am treated for controlling joint pain, and it seems to be quite effective.
paamboli
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