Arimidex - Coping with the SE's
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Hi All,
I was taking Motrin after my hysterectomy and my joint pain was much more bearable also. Since I've stopped taking it, the joint pain has returned and is really affecting me. The Motrin is hard on my stomach. Anyone else use other pain remedies that really work and yet spare the stomach lining?
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Meadowlark, some women are afraid of flax seed because of anecdotal stories and mixed research. Flax has phytoestrogens, which are not the same as human estrogens but mimic them in some ways; for this reason, some ER+ women are afraid to use it; there's some mixed research on this topic but so far it's leaning much more in favor of flax seed (as flax seed, ground up) being not only fine but in being effective in blocking your own estrogen from binding with cancer receptors -- phytoestrogens are much weaker and when they bind in those spots, they prevent the estrogen from doing so. Bottom line? If you're ER-, it's perfectly safe, and if you're ER+, you can decide what you're comfortable with. If you're very conservative, don't take flax; but nutritional studies are leaning in favor of it, so many women are going that route. Of course, more research is always needed on these topics before we have a definitive answer.
Here's one article (note: article, not any research itself) that discusses the topic but if you're really interested, I'd suggest you dig and find at least the abstracts of the various studies that have been done so you can evaluate and decide for yourself.
http://www.baltimoresun.com/health/women/sns-health-flax-seeds-breast-cancer,0,7703831.story
Here's something from this website on the topic:
"Flaxseed, also known as linseed, has been talked about since the 1950s as a potential cancer-fighting food. The grain is available as flour, meal, and seeds. It's found in some multi-grain breads, cereals, breakfast bars, and muffins. The toasted seeds can be sprinkled into salads, yogurt, or smoothies.
Just like omega-3 fatty acids, flaxseed is a good source of lignans - compounds that may have a weak estrogen effect. When a weak estrogen-like substance takes the place of your body's natural strong estrogen in a breast cell's estrogen receptor, then the weak substance can act as a relative anti-estrogen. By acting in this way, lignans might help work against breast cancer that depends on estrogen for its growth. The lignans are concentrated in the hull of the flaxseed. If the seeds are ground up, your body has an easier time getting to the lignans.
Most of the evidence of the protective effects of flaxseed has come from a few small studies done in animals. Research on flaxseed in humans is needed to study its possible effects on cancer.
Flaxseed can help keep your cholesterol down and your bowel health up. The oil in flaxseed, alpha-linoleic acid, is an omega-3 essential fatty acid. And flaxseed is high in fiber. If you choose to eat it, start with a small amount and make sure you drink plenty of water. The U.S. Department of Agriculture makes no recommendation about the amount of flaxseed you should eat each day. But many dietitians advise eating 1 or 2 tablespoons of ground flaxseed meal daily."
Rocket, if you read back through this thread you'll likely pick up more tips, but here are some of the things that help women with the joint pain: Vit. D3 (1000-5000 IUs a day, depends on the person); fish oil; regular exercise (hard when you're hurting, but movement helps); low- or no-gluten diets; cutting out refined flours, sugars, meats, diary; eating lots of fruits and veggies. I'm sure there's more and others will chime in. Not everything works for every person but the Vit. D3 and fish oil and exercise seem to help a lot of people. Oh, and Neurotin is a much milder pain reliever (in terms of SE's), although prescription, that helps me and some others a lot. If your wrists hurt, try wrist splints, especially when sleeping. Joint pain can often be controlled or eliminated; hopefully you'll have yours under control soon. Good luck!
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Lowrider - you go girl!
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Ok, so to the drugstore I go! Thanks! And Claire - we were high school sweethearts - I really like the idea of being 'out of practice' and practice makes perfect so I am pretty sure he is going to be just as nervous as me...I will be curious if HE brings lube....LOL
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Hi Naturegrrl and all,
I am just amazed at your information and knowldege. I feel this link is such a great blessing to help us along our way.I feel inclinced to buy the produc with the flaxseed if I don't overuse it, which is true in so many things. I am learning that fish oil, vitamin d in about 5,000 units, ( my oncologist takes 50,000 a day since she says she is alwas inside,) and aspirin are the big three. What else may I be missing?.My doctor even said a study had aspirin at a 40% improvement for reoccurence, but she said it without completelty believing the research. Now I am on to checking out glutten. I know there is an ezekiel bread at Fred Meyer and a non glutten bread at Great Harvest. From what I have read on this blog it seems to mainly address joint and bone pain. Is that right? Let me know if there is any other big one I am missing. Thanks so much Meadowlark
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You are leaving out weight management and exercise. Half an hour of exercise or more a day, and keep your BMI at 25 or below. I still have a few pounds to go.
If you look up the work of Michelle Holmes and Melinda Irwin, you can see the research re:weight, aspirin, and exercise. There is a Youtube video that Melinda Irwin did showing the benefits of exercise.
These are observational studies, but very interesting findings. Michelle Holmes also looked at diet to see if there was anything about diet they could find that would be helpful. However, exercise proved to be far more important (or they couldn't separate a "healthy diet" out from the exercisers).
Melinda Irwin is doing a study right now to understand the impact of exercise on the degree to which patients taking AIs are able to tolerate the medication. The theory is that exercisers fare better, so would be a major selling point to get moving vs take pain meds or abandon the therapy. This study is just getting underway so we won't have the results for a few years.
I am now exercised to the point where, yes I do have a bit of knee pain, but I usually feel my glutes or abs a lot more. That is where I want to stay. Was really a hurting puppy a week both when both sets of muscles seized up from a major cycling event plus half hour swim. It hurt big time to even sit down. (I continue to eat mostly what I want, avoiding flax and soy....which I despise anyway. I have always loved tons of fruits and veggies, so was already eating enough.)
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Rocket - Two others to add to the list: Glucosamine Chondroitin and Tumeric .
Many if not most women here use Glucosamine Chondroitin. The down side, you have to use it for about 30 days before there's any effect...and, even then it doesn't work for everyone.
Another that isn't talked about so much on this thread is Turmeric. It actually is an ancient Indian Ayurvedic remedy. I used to just eat bunches of it (added extra to curry which already contains some) but recently decided it was just easier to take it as a supplement ...an inexpensive one as well ! Here's some links: http://www.nutritional-supplement-educational-centre.com/turmeric-benefits.html ; http://findarticles.com/p/articles/mi_m0NAH/is_8_32/ai_92283919/ ; http://www.nutritional-supplement-educational-centre.com/turmeric-benefits.html
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Let me add my AMEN to yours!
I'm a newbie and I've been reading your posts. I will find out on Aug 30th next whether I will be taking Anastrozole, Letrozole, or Exemestane or Tamoxifen or some combination. I've been trying to educate myself about the possible side effects of all of the above. Seems like I might be doing the wrong thing though........I think all I've ended up doing is scaring the b'jesus out of me. I don't know how you do it. Please tell me at some point you feel sorry for yourself, and then tell me what you did because I don't feel human right now, much less normal.
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I am a newbie and starting on Sept 1st after lumpectomy and brachytherapy for stage 1 BC.Do you take it in the am or pm or does it make any difference? Also I am trying to decide if I should take zometa every 6 months to help prevent osteopenia. I used to have it in the past and took 7 yrs of fosamax and am normal bone density now. Thank you all for your help!
Karen
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mac5, it is easy to scare yourself if you just read on the negative side of SE's... the most important thing to note is that not all women have them, the women who DO have them are the women who post here most (so you don't hear much from the women who DON'T have them), and even for those of us who have SE's, most of the time for most women they're very managable.
I didn't feel human/normal for a long time after dx and treatment but I do now (6 months out from the end of treatment, not including taking A). It happens, it can take time, but you will start to feel your mojo coming back, you'll start to feel energy and joy and all that. I remember during treatment being so bogged down physically and emotionally that when I heard people laugh, I wondered if I would ever laugh again. Of course I do, and often. You'll get there!
Karen, my A comes with a label to take it in the AM so I do, but I know some women vary the time of day to help control the SE's a little better. I can't help you with zometa but I'm sure someone else can.
And oh, yeah, Lowrider, you rock!! Have a GREAT time!!
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Thanks Nature and MTG. I have been taking the vitamin D3 (5,000 IU) every day as well as fish oil (without any soy). I don't use flax or soy as my tumors were 80% ER+. I'm just not comfortable with it. I will look into the Tumeric. I'm also a healthy weight at 5'7" and 140 lbs. I try to fit stretching and exercise in but only manage to do so about 3 days a week. I have a demanding job and elderly mom to care for as well as lymphedema to manage. It's hard to fit it all in each week. Thank you for your suggestions and your help. You ladies are very knowledgable.
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mac5--I second NatureGrrl's observation, we are most likely to hear from women having the more severe of SE from tamox or one of the AIs. I take arimidex and have some hot flashes that are only bothersome at night, but controlled well with gabapentin (neurontin). I was having knee and hip joint pain, but that got better with D3 supplementation and could be from the arthritis I have in my knees from before diagnosis. For me, arimidex is very tolerable. I've had more troublesome problems from blood pressure medications! As far as the AM/PM question, that's one to put to your doc. I've read about women taking tamox and AI's in the am and pm, for different and the same reasons, some with success and some without. My onc told me I could take tamox in 2 doses, AM and PM if it upset my stomach very much (it didn't). Sometimes the timing is a matter of doc preference and experience, sometimes a matter of habit. And yes, you will feel human again, and you will have times when you don't think about the beast 24/7, in time. I'm not going to say feel "normal" because, while I feel very, very good, (especially since reconstruction) I don't feel the way I used to and that is what I consider normal. The new good feeling isn't exactly the same, but it is enjoyable. Hang in there and keep coming to the boards for support and answers!
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I've been taking Arimidex for almost a month now (with the exception of the day I had ALND surgery). So far, I experienced no side effects whatsoever. I still have hot flashes but way less than I had them during chemo (I am in chemo-induced menopause). Am I lucky or it was just not enough time for the SE's to appear?
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Almost 2 1/2 months for me on A and with osteoarthritis, I'm happy to let you know that I am not experiencing any SE that I am aware. I had one little hip flare up that lasted less than a week. No need to restart OA supplements, I mentioned earlier that I think Shape-Ups are helping a great deal when I do the serious, 1 hour walk in the am. I recommend it. Best wishes, Julia
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I have been on A for almost two months. The only problem I seem to be having is some minor hot flashes, dry eyes and some weight gain. I'm not sure if the weight gain is from the A or having a hyster/ooph in May. Other than that I feel pretty good. I do exercise about five times a week. Maybe that is what is keeping the bad SE's away!
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MTG - I have been mentioning and using Tumeric since my mets dx 11 months, 2 weeks and 2 days ago - it is not as tart as the cumin but it is a nightmare on white counter tops so have the clorox cleanup handy...LOL I haven't seen it in a tablet - any reduction in benefit? Thanks for the links...perhaps my pots and pans may be able to return to their normal color???
LowRider
PS - on the flaxseed and flaxseed oil - be sure to check on all your other medications and treatments - there are some containdications with decreased effectiveness of the meds and treatment
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Thanks to all of you for the encouragement. And yes, I will keep coming back. You all are right. No one else seems to understand.
If I start to talk about it, it's like they tune me out, or change the subject. I guess I make them uncomfortable. I want to tell them I'm not contagious or anything. Sorry for the rant, I'll do better.
This is not the right thread for it.
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It's OK to rant, you need to now and again as everything about the whole experience is HARD and SAD. But you do get through it and come out on the other side, and really can have an even greater appreciation and enjoyment of life. Most people have few or manageable SE on anti-hormanals, and we estrogen positive ladies are so lucky that we CAN be taking something to prevent reoccurence (or shut things down if it does come back). As Jo says when she posts, almost all SEs are easier to deal with than cancer! Hang in there! Ruth
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mac5 - This is the perfect place to rant ! In addition to sharing tips and questions, almost all of us take a turn at ranting now and then/ And it's awfully nice to have "friends" to listen and understand. And, FYI, we are listening....and do understand.0
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1/2 dose update- onc visit today- 2 weeks-ish on 1/2 pill a day (or I could take one every other day but I opted for this) and my estradiol levels are at 11. My onc says this is fine, that with low weight (check) and good diet (check) he feels I am good as long as I stay under 15. And my SEs (fatigue and constant, terrible hot flashes) are soooo much better. I still get hot flashes but not so much and much much less severe. They were bad, like making me sick to my stomach severe. It's early days yet though, so monitering continues- in a few weeks we do the 2/16 (is that it?) E ratio testing and estradiol again.
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jessamine - if I may ask, what's the 2/16 E ratio test ?
Edited to add: Rather than being lazy, I answered my own question. Anyone else interested: http://archive.constantcontact.com/fs081/1101302984595/archive/1101835043568.html.
Jessamine, keep us posted on your results.
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M, thank you very much for the link, I'll pursue this further with onc. My Estradiol Level = <20. Ca27-29 marker, 37.4 in Feb., 46.9 on 8/24. When I asked my nurse if this is not significant, she said that the inflammation after 3 major surgeries since Dec. could affect the result and to just check it again in Oct. Any thoughts on this marker? Thank you.
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Julia- I don't know. Maybe someone else will- my onc said 15 was the standard for treatment, but that it was somewhat arbitrary, so he would aim lower. Anyone know why inflammation would cause elevated estradiol? If you want to bring it down without side effects, I would recommend adding DIM, calcium D glucarate and flax (which specifically addresses the 2/16 ratios) to your routine, plus a low fat diet. We tested me with and without the supplements and they made a real difference. Or you could talk to your onc about ovarian suppression if it's appropriate? The problem with these boards is that it may really just be different for everyone- if they say you're fine, they must have a good reason right? It's just so hard to square that with the parts of treatment that are so cookie cutter and unpersonalized. Maybe you could try supplements aimed towards reducing inflammation, such as fish oil?
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I need to go back to some of my texts to be sure, but if I recall correctly stress causes an increase in the body's production of cholesterol. Cholesterol is converted sex hormones (among others) so and increase in cholesterol could possibly increase estradiol (a sex hormone) levels temporarily.
One thing I do know is that the stress of surgery and anethessia causes a LOT of negative changes in the human body. Anyone here ever had a period brought on early or delayed becuase of stress? The menstrual cycle is driven by hormones, so obviously stress has some effect on hormones.
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Are any of you finding the Arimidex is making you tired? I seem to be sleepy all of the time. My onc said it could be the Arimidex.
Sue
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I'd raise my hand but I'm too tired. :-)
Yes - severe fatigue, joint pain, and weight loss. Ugh.
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Arimidex has made me very tired! I can barely keep my head up at dinner time, sometimes while driving- I have to pinch myself to stay awake. Went to onc yesterday, told him about it, I have had only minor ache (very manageable) he switched me to Femara because of the fatigue. Said if that isn't better we'll try tamoxifen. Have anyone used or heard of using tamoxifen being well into menopause? (i have also had weight loss)
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Oh yea! I have gone from a four hour a night sleeper to a twelve hour a night sleeper and am still tired the rest of the time, and ditto to the need to pinch myself sometimes when I'm driving to the doc for check ups (my drive is two hours long).
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nmi right now I can only hope for the weight loss as an SE! My BMI is getting worse the longer the wait before starting treatment. Fat is a source of Estrogen. And my body seems to be storing it for the winter, or for a long dry spell at least. I have gained at least 20 lbs in 3 weeks and I'm a basket case!
I don't know if any of you are being treated at MD Anderson or not, but MDA treats the whole body, not just the Cancer. My Onc was already concerned because I was losing my hair so I have an appt with an Endocrinologist already. It's scary. It's like the BC is creating it's own fuel!
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Thanks girls - good to hear I'm not the only one. I've lost 22lbs since this whole nightmare started. I asked the onc if it might be because of stopping HRT - he confirmed it. I needed to lose weight anyway, so I'm certainly not complaining. The worst aches I'm getting are in my hands but they don't bother me that much. He did ask me if I'm still taking fish oil, so he definitely thinks it is worth it.
Sue
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