Arimidex - Coping with the SE's
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Jo-
WOW- I went to the Mayo Clinic site- whew. Lotsa SE as 'common' for this one! Even though folks said things kick in after 3 months- I started at about one week. The joint pain has increased. The nausea is much better. At first it was rough for me- and some vomiting and that was so weird because I never vomited during chemo. Thank goodness that was only once. Nausea is so much better taking the med about 7pm each day.
Thanks Jo for the Mayoclinic link. Agree w/ others that it's worth it. I am so highly ER positive- though my MO did say if the SE gets bad he can switch to another AI- but said the SE might be same or worse on another.
One month down- 4 years 11 months to go. I think I'll be scared to STOP taking it. (Unless my bones get too bad). My Vitamin D level was only 33 to start- how much should I take daily? was taking a supplement just once a day wonder if I need more??
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Jo5 Thank you, I was not aware of the new clothes issue. I did try on clothes yesterday at Penneys. So just trying them on may have caused this on my stomach and chest. Yes, I decided to wash them before wearing, even before your post, as they smelled so strong of fabric finish, or worse yet, maybe the formaldehyde. However, my skin has been bumpy around the face near hairline and ears, since surgery. I was thinking the neuclear stuff and the blue stuff that they inject to see the nodes. I am thinking I have had some internal allergic reaction. My RO had said no, and just shook her head, like no one breaks out from these treatments. I am telling you, if it weren't for this site, I would be thinking i am crazy. Thanks for being here.0
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My D was in the single digits just before diagnosis. Put on prescription for 3 months then 1000 IU of D3 (already had 400D in my multivitamin). Then it was found that I was slightly osteopenic so added Calcium with another 400 IU of D. Now my total is 1800 IU of D or D3. My D level a year after initial low D diagnosis is slightly high now at 79! Yes it can be raised. (They're OK with it being slightly elevated).
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I am going to check my D level, I am not sure they even gave me that test. MO just told me to take Calcium and D. Did not even tell me how much. I do know that my scan diagnosed me with osteopenia. I must give this some study
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osteopenia is not osteroperosis. Take it as a warning.
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Stage1: I truthfully don't even remember any of the docs telling me to take D or calcium.... Another question for my PCP when I go see him next week... It is so hard to figure these things out...I have been taking a no soy multi that has 1000mg of D3 in it though - maybe that is why they didn't say anything???
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My Ocologist hasn't told me what my levels where lately. I will have to ask next time I go. I currently take 4000IU of D3 daily and if I try to swallow the calcium I get another 800 IU's.
Here's my question will the upset stomach-diarrhea go away? I have had the opposite problem since last July that now I am stumped with the constant upset stomach. uggg. I am not sure which is worse? My knees still hurt and really hurt this week with being at my moms and having to go up and down two flights of steps. I might have to learn to sleep on the couch.
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About the Vitamin D; ask to get it tested. You don't have to wait to go to your onc. I called my GP and he ordered the test. Then you can see if you need to do anything different or not. If you are in the normal range, you don't want or need to be taking huge doses for no reason, but if you are low, then you will want to get it up. Mine was a repectable 52, so I may add another carton of yogurt a day, but otherwise don't feel like I need to be doing anything differently.....which is good for my peace of mind!
I don't know about the upset stomach. Does taking it with or without food make a difference? Or at a different time of the day?
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I have not notice a difference with food so far. I have only been on this one a month now. I should add that I have taken two z packs since starting this too. Hoping it will improve on month two.
As far as my Vitamin D level...the last time I asked about it my level was at 22 and that was Jan. They are the ones that had me up it to 4000 IU's so I guess it is working since they haven't changed it. They do test every three months. Hummm may call and ask them where it currently is. I was in just last month.
Thanks
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It was my GP that tested my D a year before my diagnosis. He tests all his patients. Living in the northern US we don't get enough sun in the winter months. He finds most of his patients have low D.
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Interesting. My GPs remark was that more southern women have low Vitamin D because (according.to him) they tend to have worse diets (more fried foods, less fresh fruits & veggies etc.). I think it is pretty much of an epedemic everywhere and I worry about kids especially because most of them have such as rotten, fast food/junk food diet. Much worse than most of ours when we were growing up.
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My MO told me that since she started testing for Vitamin D she has not had a single patient test too low. In Florida it is difficult to not get plenty of sun year round. Plus, this is an area populated mostly with middle class retirees who are careful about their diets. Perhaps the "poorer" south may have more of a nutrition problem but as a whole we southerners are mostly moving in to the 21st century.
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pj isn't Florida filled with northerners?
Bit different than the deep south. 0 -
Gma, I am still looking for the proper vitamins to take. I saw a nutritionist who gave me a list of vitamins and it tells, just don't overdose. No more than 2000IU of Vitamin D, no more than 2500mg of calcium. (1200 mg is advised for me). I am still looking for multi vitamins that don't have BHT and soy in them. Also, it is advised to take the calcium apart 4 hours from the synthroid, and the calcium to be taken twice a day for proper absorption.
I get lot's of sun in Ca. maybe that's why I did not get the D test. My calcium levels were very good.
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I take Centrum and a couple extra calicum chews. They don't do the D test unless you ask for it.
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I posted this awhile ago, but it might be worth repeating it:
I went to a very interesting speaker the other day. She is a doctor, nutrition specialist, and an eleven year breast cancer survivor. Here are some of her tips for staying healthy:
1. We all know we should eat more fruits & veggies, whole grains, less red meat, processed food etc. so I am not going to go into any of that.
2. EVERYONE should be taking a multi-vitamin. Make sure it says ‘Complete' on the label. Make sure it contains iodine, Vitamin K, selenium and folic acid along with all the other good stuff. Interesting facts about why multi-vitamins are important:
* older women with the lowest levels of vitamin B-12 were at the greatest risk for breast cancer
* taking acid-blocking medications make you less able to absorb B-12
* she recommends 400 mcg of folic acid a day. It works with the B-12 (studies have found that folates may help to make chemo more effective and decrease side effects)
* B 6 is important in lowering the risk of breast and colon cancer
* she recommends 90 mg of vitamin C
* 30 iu of E
3. Omega 3.....either eat oily fish twice a week or use fish-oil supplements (make sure it says EPA and DHA approved) 1000 mg a day. It's associated with decreased risk of cancer, heart disease, inflammatory disease, depression and more.
4. Vitamin D....a big deal.....she recommends getting it tested (should be between 40-50 ng/dL). She recommends 2000 iu a day to maintain a good level. Many, many conditions are associated with low vitamin D; heart attack, cancers, rheumatoid arthritis, muscle weakness, asthma, diabetics, multiple sclerosis etc. etc. etc. There are over 200 different body tissues that have been identified so far that have receptors for the vitamin D hormone and they need it to work properly.
* adequate Vitamin D levels has been shown to reduce the side effects of taxol based chemotherapy
* Adequate Vitamin D has shown to reduce the side effects of aromatase inhibitors
* start with a multi-vitamin, drink milk, eat yogurt (check and make sure it has vitamin D added), and most people will also need a supplement to keep that high of levels
5. Vitamin K, should get 100 mcg a day. Check your multi-vitamin, not all of them have it added. Inadequacy leads to an increased risk of various cancers, heart disease, osteoporosis and kidney problems.
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Well, it is true that many parts of Florida have been infiltrated by northerners. I live in NE Florida in a semi-rural area that is still populated with indigenous Floridians largely. South Florida draws a lot of northeast transplants, SW Florida draws more from the midwest, central Florida has attracted a lot of hispanic or latino people, many from south Florida after Hurricane Andrew. North Florida, north of Daytona Beach up to Jacksonville and across the panhandle is much less tropical (and cold enough to freeze in the winters) so much less desirable to snowbirds.
I wonder if people from up north are genetically predestined to have lower Vitamin Ds or if, once they move south, the sun exposure just naturally raises their levels. I wonder if conscientious use of sun screen lowers Vitamin D levels. I wonder if you can absorb Vitamin D through nutrition without consuming the cereals and dairy products that are vitamin supplemented?
Vitamin D DeficiencyNutrient deficiencies are usually the result of dietary inadequacy, impaired absorption and use, increased requirement, or increased excretion. A vitamin D deficiency can occur when usual intake is lower than recommended levels over time, exposure to sunlight is limited, the kidneys cannot convert 25(OH)D to its active form, or absorption of vitamin D from the digestive tract is inadequate. Vitamin D-deficient diets are associated with milk allergy, lactose intolerance, ovo-vegetarianism, and veganism
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ruthbru,
You take C senior. I noticed you mentioned lots of things that speaker recommends as far as vitamins. Does Centrum have all that in it as well? I've been buying some vitamins line, and have decided I'm basically waisting my money.
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I just take plain old Centrum. Yes, it has all the vitamins at the levels I listed. I don't buy any of the fancy stuff, or the 'Silver' or "For Women' or whatever they want to put on the label because according to that speaker and my doctor, companies just slap the catch phrases on to make more money. You are getting the same thing either way!
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Centrum for women has stuff for breast health… I don't have any so I stick to regular. Could take "silver" now that I'm 50 I suppose. 0
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I have Centrum Silver, but I am looking for a new one that does not have BHT in it. BTW, I have decided to discontinue my Flaxseed oil, as I read the new thread on this site. Also, read the calcium chews label, contains soy. 0
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Hi ladies, I hope someone can answer this. I am BRCA1+, had a BMX, had my thyroid taken out and just had a full hysterectomy. I am er+/pr+. I wonder if I still need to take generic Arimidex since all my woman parts have been removed? I tried taking the generic Arimidex - two a week. My joints hurt and the hot flashes were bad, that is why I stopped taking them after two days. I have tried to start, only to stop after two days. Anyone else in a similar situation?
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Slinky: When you are in postmenopause, your adrenals start making estrogen for the non functioning ovaries and and then the fat cells store the estrogen.... The Arimidex works on that estrogen not the ones from your woman parts....
Edit: Adding - the taxomenfin would have been the med you don't have to take if you are forced into menopause by having a hysterectomy...
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Gma, thanks for your response. That makes sense that Arimidex would stop the estrogen production from other parts of the body. I guess I am trying to figure out if the benefits outweigh the SE's. Always a hard decision to make!
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Calcium chews have 'soy lecithin', so does chocolate candy and probably many other products. I don't have all the facts at my fingertips because I researched right when I started all this awhile ago. But it is different from soy, and from what I found, is OK.
Slinky, try to stick it out for a longer period. You need to give it more time to see how your body will adjust.
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Thanks, Ruth. I just popped my first pill since my hysterectomy. Fingers crossed that the SE's will be mild!
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GmaFoley post menopausal women can and did take Tamoxifen for years. I like to think of the AIs at the estrogen sucking drugs while Tamox is the estrogen blocking drug. They work differently but Tamox can be taken by post meno women… but the AIs are useless on pre/peri meno women.
Slinky there are other AIs as well at Tamoxifen as options if Anastrozole (generic Arimidex) SE are too rough for you. They also have drugs for hot flashes that don't involve hormones. I would discuss this with your onc.You don't want to give up too quickly on a gun that might save you.
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ruthbru, I do not know what the difference is between soy and soy lecithin. I guess I have more research to do.
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This is an excert from BCO 'Ask An Expert' July 2007:
Help to avoid soy, flaxseed for ER+? Question from CarolC: I have had estrogen-positive breast cancer and must avoid phytoestrogens found in soy, flaxseed and oil of evening primrose. How much of a risk is there in eating foods with soy or flaxseed in them? Almost everything "lite" contains soybean oil or soy lecithin. Everything has soy lecithin or soybean oil in it that I purchase. I take Arimidex daily. Answer -Beth DuPree, M.D., F.A.C.S.: Unless you are adopting a diet that is so heavily weighted in soy products, I do not believe that you need to worry about the tiny fine print on foods that you are purchasing to eat. The phytoestrogens that are found in soy can have estrogenic effects in the body, but unless you are eating a diet that is so heavily loaded with soy products and soy milk and tofu, etc., I do not think you need to worry about the soy bean oil and lecithin found in the fine print of some of the processed foods. I do not believe that women that have been diagnosed with breast cancer should change their diet to increase the amount of soy in their diet, as the studies involving soy in the diet are very conflicting. Therefore I would not change my diet to increase the soy thinking that you're adding a benefit. But I also would not avoid products in your diet that have soy or lecithin as such minor components.
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more from a 2009 BCO thread:
"We were told at a nutritional seminar for women with breast cancer, that soy lecithin is fine for er/pr+ women. The lecithin is a specific isolated component that does not contain the phytoestrogens that either the whole soy product or concentrated phytoestrogen supplements (ie natural menopause relief products) do. Soy lecithin is so common in products as an emulsifier."
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