Arimidex - Coping with the SE's
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CaroleH.....
Where are you? Someplace cool, I hope!
pam
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NativeMainer wrote: My TSH and estrogen levels show the arimidex is active and doing its job. If there's a real question about absorption of arimidex, ask for hormone levels the next time you have blood work done, that should tell you where you are and if you have to make adjustments.
NativeMainer,
My quarterly appt is also coming up and I do want to check about metabolizing A. Am I correct in thinking that the hormone test is a Serum Estradiol Test ? Is there something else as well ? And what are TSH levels ? Thanks.
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MTG, what is the relationship to TSH and arimidex? thank you!
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TSH is thyroid stimulating hormone, the test to see if your thyroid is properly functioning... but I don't know its relationship to anastrozole.
pam
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Woops--I wrote TSH when I meant FSH--follicle stimulating hormone, used to determine if I am in menopause or not. Sorry to create confusion. I can't lay hands on the report rght at the moment, but I do beleive it was a serum estradiol level for the estrogen level.
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Thanks for the information JO-5. It states that women who are pre or perimenopausal at the time of DX should only get Tamoxifen, however my onc gave me Arimidex along with Zoladex injections monthly prior to my hysterectomy/oophorectomy to chemically stop my ovaries. So even though I was peri-menopausal at the time of DX, I became menopausal prior to being prescribed the Arimidex. Was there anything in the research that you've come across that would suggest that this is not an acceptable practice? It's water under the bridge for me as now I have no ovaries, but just wondering about others who might be given the same treatment.
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Scientific or not - going to raw sugar, trying to eliminate anything 'processed white' and avoiding as much gluten and soy as possible has truly helped the joint pain and did have the added benefit of dropping weight which also makes my knees and ankles very happy! Ok, so I must have my 1/2 and 1/2 with the raw sugar in my fresh ground beans coffee every morning - I don't think that one and 1/2 cups is going to sour the remarkable benefits I have gained.
To make it easy - most of Chex cereals are gluten free and the regular grocery store carries gluten free pancake mix, cookie mixes and flour - no special shopping required. I don't 'low fat' anything - I just eat 1/2 as much...LOL. Brocolli is the best of the cabbage family - cooked not raw - you may lose some nutrients but the energy it takes to digest the raw is better served fighting the cancer. Garlic, garlic, garlic - in everything and tumeric - careful on the white counter tops - is excellent.
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Has anyone had an oncologist that provided any bone density treatment while you were undergoing chemotherapy? I had osteopenia prior to starting chemo (TC X 4) and now have severe osteoporosis. I experienced a 11.5% bone loss in less than a year. The Onc told me that chemo causes a 5-7% one-time-loss and AI causes a 2-3% annual loss. He said he didn't do anything to prevent bone loss because there are no recommendations to do so. I sent him research papers that indicate bone loss can be prevented (especially in premenopausal women -- which I was) if given zoledronic acid 3 times. He said the sample size was too small, it wasn't cost effective, etc....Now I have bones like an 85 year old (based on average bone density by age) and he just says to stop running! So...was anyone out there treated for their bone density before or during treatment for BC???
Brenda
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Well, I have bone mets so I am treated with Aredia - coming up on my 1 year metsaversary and we just did a bone density test that I don't have results for yet. I haven't lost any height so that is good seeing as how the mets is in my spine. Kinda odd that they would not have recommended at least calcium supplements. I take them too and did when going through chemo 10-11 years ago. I wasn't specifically 'treated' for bone density - just bulked up on calcium intake.
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I got a bone density test after 2 years of arimidex. Fortunately, my bone density results showed my bones are consistent with a normal woman of my age despite bieng on 2 high risk drugs!
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I do a yearly DEXA scan, just as a precaution. Didn't do/take anything special while on chemo, just my usual calcium (actually was not thinking that much about bone density at the time!). I am thinking that most oncologists pretty much 'just' focus on the cancer part of things, and most surgeons 'just' concentrate on the operation part of things,( not possible consequences such as lymphedema), and other specialists mainly concentrate on whatever part of the medical field they are in. It is a shame that all doctors aren't trained to think more holistically about their patients.
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I wasn't treated for bone density during chemo but will be doing zometa now (during arimidex) for dual benefit- osteopenia/recurrence fighting. (my oncs current standard of care)
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Brenda - I think there may be some helpful, separate threads about Zometa and other supplements for bones. I asked about Zometa and was completely shut down by my onc and surgeon. One reason - There is a possible downside of jaw problems. For now, I'm taking a wait a see approach
Jo- Thanks for the study. Interesting reading although I'm not certain about the findings. While I'm certainly no expert, I was pretty surprised by their conclusion that AIs should only be used for 5 years, esp since there is so much anecdoctal stuff on this thread of women staying on it for longer. More significantly, and more personal to me is the recommendation against the CYP2D6 test ("They specifically recommended against use of CYP2D6 genotype to select adjuvant endocrine therapy.") I had that test and found out that that gene wasn't working and that I was getting "sub therapeutic" levels of endoxifen (the active form of Tamoxifen). Now, if they can test my blood and find that the levels of endoxifen/tamoxifen in my system were too low to be of benefit, why in the world would I not want to know, since going without the test would have meant years on a pill that WAS NOT preventing a recurrence ?
IMHO, all women on Tamoxifen - and Arimidex as well - should be tested (different tests of course) to make certain they are properly metabolizing it. If not, we certainly have the right to know and to explore our options !
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The thing is, cyp2d6 test results do not correlate with clinical outcome. So there is something going on with tamoxifen beyond the metabolite endoxifen. Early results indicated that your cyp2d6 status made a difference but as the sample grew in size the difference disappeared.
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Brenda, I asked my onc about taking zometa even though my bone scan showed everything was within normal range and he said he would give it to me twice a year based on an Austrian study that suggests Zometa fights recurrence. I haven't decided yet whether or not I'm going to do it. I need to research the drug a bit more before I decide. Have any other ladies taken Zometa as a cancer preventative treatment?
Kathy
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Kathy, this is from the BCO archives dated May 5, 2010. To me, it sounds like unless there is some other really good reason, it is used mainly with Stage IV ladies and it also has lots of potenial SE of its own that one would need to weigh before taking it (especially if your bones are OK at present).
Brand name: Zometa
Chemical name: Zoledronic acid
Class: Bisphosphonate. Aredia is another bisphosphonate.
How it works: Bisphosphonates limit the activity of certain bone cells, called osteodasts, which help cause the bone weakening and destruction that can happen when breast cancer spreads to the bone. Bisphosphonates also can help keep blood calcium levels normal -- important because destruction of bone may increase blood calcium.
Uses: Zometa typically is used to reduce bone complications and bone pain caused by advanced-stage breast cancer that has spread to the bone. It's usually given with other chemotherapy medicines.
How it's given: Zometa is given intravenously.
Side effects:
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This is from March 18, 2010.
RSmith: What are your thoughts on using Zometa in Stage I breast cancer? I hear there are studies showing it lowers recurrence and also helps keep bones strong. Do you think this will become standard of care for early breast cancer?
Answers -Ruth Oratz, M.D., F.A.C.P.: We addressed this question earlier directly when we talked about the updates of the use of Zometa in postmenopausal women as well as premenopausal women. Whether or not this becomes a standard of care still remains to be seen, although there is an increasing body of data to support the concept that the use of bisphosphonates in general may help reduce the incidence of breast cancer recurrence. I would like to emphasize, however, that this effect is modest and that there are potential side effects from these drugs. So the risks and benefits of using these agents for a given individual, again, should be discussed with her physician, or treatment should be conducted in a clinical trial. Carol Kaplan, M.D.: I agree with Dr. Oratz and am excitedly awaiting results from trials designed to answer this specific question. Patients should not underestimate the potential toxicity that can come from Zometa therapy, which include bone pain, a small risk of renal insufficiency, and rare occurrences of osteonecrosis of the jaw. Zometa is a costly medication and at this time is not approved for use in the adjuvant setting, which may limit coverage by insurance companies.0 -
Thanks everyone. I will continue to check this out. It looks like I will be doing Zometa (3 X year infusion) to prevent bone loss and Forteo (daily injections) to build up bone mass. Hopefully my bones will improve back from there current 85 year old state to their original 47 year old state! I know the onc said preventing bone loss was not cost effective but the Zometa will cost $9000 per year and the Forteo is $8000 per year... indefinately! How is this cost effective...
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Thanks, Ruth. It was very nice of you to gather that info for me.
The only reason I am considering Zometa is because I have Von Willebrand disease, a blood disorder that prevents me from taking any anti-inflammatory medications including Advil, fish oil or even low dose baby aspirin. Many women use these as preventatives and I worry that I may be at a disadvantage in the fight to prevent recurrence. I really don't want to take any more medication and my breast surgeon is against it, but my onc has left it up to me and I am always changing my mind. During the day when I'm busy and a bit more rational I am against it, but at night when my fears creep in, I worry I'm not doing enough. Sigh...and more sighs.
Brenda - I do not know about Forteo, but my onc told me that insurance probably would not cover me for Zometa since my bone scan was good and the cost would be about $1000 per infusion.
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Just a bump up on the bcmets.org site listing of the bc mets treatments...
http://advancedbc.org/content/treatments-common-use-metastatic-breast-cancer
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Kathy, exercise like crazy (good to prevent reoccurence, build bones and make you tired so you can't think as much
). And if that doesn't work, get a good prescription sleeping pill so that you can sleep through the night! 0 -
Second what Ruth is saying about exercise, although I may be singing the blues in a month or so once I get my bone density checked.
So doing a lot of walking, and can't wait to get back to x-country skiing this winter. Talk about an excuse for walking those hills when cycling!!!
I did find the perfect way to keep my attention off my sore knees.....exercise to the point that all your muscles seize up. Slept like a log too.
I make sure I do my free weights routine each weekday too.
The trick is to reverse-engineer walking and other exercise back into your life. So I do store errands primarily on foot. Perhaps I should get a large, energetic dog. Now THERE is a way to get a workout. Have someone drag you along for miles at top speed.
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Pets are also great therapy; just having a pet has shown to lower blood pressure, help with anxiety etc. They get you get you out of yourself.
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Kathylev,
Zometa is being ordered to prevent bone loss not for mets so my insurance will cover it. Forteo is parathyroid hormone (r-pth) that build bone mass. Brenda
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I'll be having Zometa even though my bone density is quite good. My onc said that women with a low bone density to start with are at more risk of getting osteoporosis. However, he's going to lie to the Aust Gov so I can have it for free - more for the recurrence prevention than anything else - I just love him!!!! I've done the dental checkup and am now good to go. Jaw necrosis is only a rare SE of Zometa.
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Suepen,
I am also stage one and will be getting Zometa twice per year. How often will you be receiving Zometa? My onc said she has only see one case on jaw necrosis on a patient who was receiving zometa monthly and had a tooth extraction while on the drug.
Thanks
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I'm trying to talk my onc into zometa as well. I'm 39, but found out I already have osteopenia. She has agreed to aredia as a preventative to more bone loss, but she's still dragging her feet on the zometa. Kathy, there are several threads that talk a lot about zometa and it's possible link to recurrence reduction. Go to the search bar and type in zometa and I'm sure you'll find them. They are full of information (and quite long!)
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Thanks for the input everyone. I will look into the Zometa threads for more info.
Kathy
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Aredia and Zometa are both biphosphonates that help prevent bone loss and likely a recurrence as well. Being stage iv, I get the Aredia to help heal the bone mets - the onc seemed to think that the se's were the milder of the 2 - I get an infusion every month. Here is a link to take a look at the both of them and there is another as well. SE's are similar - weety if you are tolerating the Aredia well, why would you want to switch? Just asking.
http://advancedbc.org/content/treatments-common-use-metastatic-breast-cancer There are incorporated links to the full read out of each treatment. It is a good guide.
Best wishes
LowRider
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