Arimidex - Coping with the SE's
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Hi Lowrider and weety
Thanks for your replies. I think that I will get a copy of my lab report just to see what it says and then go from there. thanks Beau
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Zenith
Hard as it may seem, try to be gentle with yourself just starting an AI. It changes our hormones and therefore really effects emotions - if it doesn't settle down, there are several different antidepressants you can take with an AI. I take an SSRI, generic, and had a very bad experience with Effexor years ago ( long b4 bc) - talk to your oncologist, and see what else is possible. Although many oncologists mention Effexor first - probably because they now know it can be taken with Tamoxifen - you do have more choices on an AI.
When taking Tamoxifen, you can not take an SSRI ( Prozac, Paxil, etc.) so because of that, many oncologists seem to stick with Effexor. Personally, I wouldn't allow my worst enemy to take it! But that's from a very personal experience - and the HELL of some people trying to stop taking it. It's not so much the SE's as the difficulty of stopping the Effexor - no matter how slowly one tapers off it.
If your oncologist doesn't have suggestions of options, find a good psychopharmacologist - a doc who specializes in medications - someone with a medical degree - most therapists can't prescribe medications.
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Ladies: I wonder if you can advise me on something. I have been on Arimidex for over 7 years and despite the depression and emotional rollercoaster it has me on, I have been enduring it. However after one of you posted that Vaginal Atrophy was an SE, I began to wonder if I should make an appointment to see my gyn so she can exam me and let me know if I am shriveling up to nothing in that area and if it can cause me pain in the future. Forget about sexual activities, that was over for me about 30 years ago so I don't need creams for that. Is there any other vaginal problem I should be concerned about now that I am celebrite? Since she doesn't feel I need pap smears any longer since my one left over ovary from a partial hysterectomy ompteen years ago has shriveled up, is it a necessity for us to even see our Gyns any longer?? Any info or advice you can give will be appreciated.
I just don't want to wake up one morning in intense pain due to the Arimidex shriveling up my insides. My Onc only seems to be concerned about my bones holding up. He could care less about what the Arimidex "might" be doing to the rest of me. So if you can advise, I will greatly appreciate any help. Thanks!
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Medigal I am certainly not an expert, but I thought that as women, we always needed to have pap smears, unless we have no uterus. Again, being no expert, I would also think that if you were having side effects from vaginal atrophy that you would be aware of it with symptoms of bladder/vaginal infections. Someone please correct me if I am wrong.0
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I have been on Arimidex/the generic now/ for almost 4 years. Yes I have shriveled up labia, almost like a baby. I still have a pap every year but I keep forgetting to tell my onc about that. I just saw her last week. I will talk to my PCP maybe she will listen.
My aunt had a hysterectomy about a year ago due to a cancerous polyp and just had a pap for the second time. The test also checks for cervical cancer I thought.
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If you have a cervix and are secually active you need pap tests. Having a hysterectomy doesn't automatically mean no cervix, you have to find out from your surgeon if the cervix was removed, too. If the cervix was removed with the uterus, no paps needed. On the other hand, those of us who are celibate, have had negative Human Papilloma Virus tests and 3 years in a row of negative pap tests do not need pap tests done more often than every 5 years. At least that's the schedule I'm on now. So the vaginal atrophy isn't a problem for me, at least not until the next pap test in 3 more years. . . .
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Thanks ladies for the replies and help. I think I will make that appt with my gyn because I think I still have a cervix. It's just that a couple of years ago when she tested me she didn't do the pap because she said I didn't need it since everything was shriveled up(???). I'll see what she does this year because I think I should have some kind of pap test for protection. Have a nice evening!
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Hi Medigal, as others have noted, if you have a cervix you need a pap. My oncologist is firm on the 'once a year while on Arimidex' rule. Ask your gyn if you have atrophy or not if you aren't sure. If you do, you would be at a greater risk of infections etc. & might want to consider dilator therapy. Are we having fun yet?
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Hi All,
I have popped back in to say hello and thanks to those who replied to me about my estrogen levels. I am waiting for my labs, etc. In the meantime, as I continue on this journey, I have a pre-existing condition of herniated disks in my neck as well as arthritis in the neck post chemo. It is very uncomfortable, but still tolerable in the grand scheme of things.
Here is my question: I am wondering how proactive I should be in regards to bone-strenghtening meds. I am taking calcium and vit D, as well as exercising,etc, but wonder if I should start on the bone strenthening meds earlier rather than later. Does anyone else have this issue to contend with and if so, how do you manage it/think about it?
I wish you all a fine day! best, beau
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Caerus - Thank you for the info and your support. I will definately give arimidex some more time and or try another hormonal before i try effexor. I don't want to get into something with worse SE's.
How long should I stay and arimidex to see if the hot flashes become less or go away? right now I am having 7-10 hot flashes a day lasting about a minute each. they are uncomfortable and embarassing as my face gets beet red. I have been on it about 1.5 months.
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Zenith, I would give it a couple more months....some tips that helped me to get fans and put them everywhere (I got a tower fan which I put right next to my desk at work, a tiny fan I could set on my lap while watching TV, a big fan for right next to my bed etc. etc.). I also found that if I could keep my wrists cool, the rest of me stayed cooler too. I have a bottle of frozen water with me and kind of roll my wrists around on it (hopefully slyly enough so people didn't notice), and wear light & layered clothes that I could get off in a hurry (sweaters open in the front instead of pullovers etc.). I leveled off so gradually that I didn't notice exactly when it was finally O.K.
Beau, I wouldn't be in a hurry to start bone strenghening meds, now there are some studies out that long term use can lead to different kinds of fractures. What I do is get a yearly DEXA; that way if something starts to go, I will know right away (and then would think about meds). If you can keep your bone density in the normal range naturally through exercise/calcium/vitamin D and diet.....that is the very best way to go.
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zenith, although I'm on femara, all the AI's are similar, and sadly to say I'm still having hot flashes almost a year later.
Beau, I was osteopenic (at age 38!!!!) before starting the AI (onc says the chemo must have really done a good one on my bones) so I recently started on zometa every 6 months for 2 years. My onc seems to think that should be plenty to keep me from losing any more bone density, and he is also hoping that it will reverse some of the damage already done. I think I'm due for another bone density scan in a few months, so we'll see. . .
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Ladies, I just thought you would be interested in my visit to my gyn today. I asked her all my questions about Arimidex, vaginal atrophy, estrogen etc. and she was very helpful. First of all, I do not need Pap Smears because she said I do not have a cervix. However since they left me with one ovary years ago, even tho it has shriveled up, she feels I need to let her exam me once every two years to keep a check for problems with that.
As for the Arimidex and vaginal atrophy, she said I looked great in that area and the Replens must be helping me out. She saw no signs of any serious atrophy even after 7 years on Arimidex! She agrees with my Onc that as long as my bones hold up, I should stay on the Arimidex for as long as I can. I told her about my concern of the Arimidex blocking me from having estrogen all these years and she explained to me that menopause stops most of our estrogen so I don't have much after meno anyway. She feels what the Arimidex does to protect me from reoccuring bc is more important than worrying about having less estrogen. She basically agreed with the info you already gave me. If I have pain from any vaginal atophy then I need to see her about things I may be able to do for it. Otherwise, just keep chuggling along! All in all, it was very helpful exam and she even checked my breasts for me. I got my money's worth, I think! Just wanted you to know your info was on target, as usual and I do thank you for your advice.
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Medipal -
How often do you use the Replens? I'm having some serious issues and I'm about to try Crisco!
E
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Crisco-----LOL!!! I know exactly what you mean, though!
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I just can't get the image of fried chicken out of my head.
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enjoyful = LOL, that's why I switched to coconut oil ( extra virgin!) instead ;-) Giggles imagining waht makes a coconut a virgin?
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Wondering if anyone knows an answer to this. I had my estrogen level checked by the Onc, along with FSH. The estrogen test came back saying simply 'less than 20'. I didn't pay much attention at the time because the tests were to see if I was really menopausal, and I am.
Now that I'm on Arimidex, what should an estrogen test read? Is just 'less than 20', OK, or should a test be more specific and give an actual number and shouldn't it be as close to zero as possible?? How do I know the Arimidex is working?
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The post menopausal condition is defined as an estradiol of less than 20 pg/ml, so the test checks for that level. If there isn't that much, the test stops there, it only goes on to measure the estradiol when the level is greater than 20 pg/ml. Estrone is the form of estrogen that is mostly present after menopause and is the level we really need to measure. If the total estrogen was given, you can subtract the estradiol from the total and get an estimate of the estrone. Unfortuately, unless the total estrogen is specifically requested the lab only measures the estradiol, since the most common reason for doing the test is to determine if a woman is post menopausal or not. There really isn't a proven way of testing if the Arimidex is working. If you are having side effects like hot flashes, it's a good sign that it's working.
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I think its working, I have them again.... I was on HRT for a little which stopped the hot flashes but I quit the day I found the lump. I am going to ask about the amount of estrone next time I see my onc...thanks for the explanation.
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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, hear disease, osteoporosis and kidney problems.
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great info! Thanks for sharing. Do you remember the speaker's name? Has she written any books?
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thanks for the info!
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Thanks ruth!
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Who usually tests for the Vit D levels? Should I ask my Med Onc or a regular doctor?
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Thanks, Ruth1
Lee,
I had my D levels checked when my DEXA showed osteoporosis, and, yes, I was very low. This was a few years before I was diagnosed with a bc recurrence. I think I had probably been very low for years, but they hadn't checked. I was put on a high dose prescription of 50,000 IU's daily for several months, and it was brought back to normal. Now I'm taking 2,000 IU's daily of D3. Either your primary doc or onc can have it tested. I've had both. My onc has said there seems to be a link with low D and BC. Now I'm tested every couple of years. But, it has remained in normal range since I've been on 2,000/day.
Lane
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I was tested by my primary care MD a year prior to my diagnosis. He tests all his patients. I was very low. First put on prescription D then on 1000 UI D3 every other day (also have a 400 D in multi vitamin). Tested again and was low but normal. I started taking the 1000 IU every day.
Then had a bone density test after BMX and found out I was osteopenic. I was put on calium that also had an additional 400 IU of D. Now I am above normal. My primary care MD isn't concerned and doesn't recommend lowing my dosage.
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I've been on Arimidex for a couple of weeks now and am noticing that I am ANXIOUS, is anyone else having that S/E? It is turning me into a raving blonde, or at least my blonde roots are showing!
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heavenschild, I haven't had that se but I'm certain others have as we have some of the same and then some different se's. Many will tell you that some se's go away or become manageable over time so we usually take a wait and see stance. That is unless they become unbearable then you may want to talk to your onc about trying another AI. See if you can give it time, just tell everyone to stay out of the way of the 'raving blonde'.
lee7, I've been having my med onc run the test but did have my primary run it once. I go again this month to med onc and will see where it is now. I'm doing 5,000 iu's/day because although they both told me I was "normal" I was only testing around 30 and to me that's too low so trying to get it up before I revert to maintenance dose.
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Native; her name is Dr. Cathy Breedon. She is a Prenatal/Pediatric and Clinical/Metabolic Nutrition Specialist. She hasn't written any books (that I'm aware of) but I believe if you google 'Cathy's Guide to Nutrition' series you will find some her handouts. The two I got at her lecture were 'Nutrition and Breast Cancer', and 'My Current Top Five Easy Ways to Improve Your Family's Nutrition'. If you can't find them, but would like them, PM me your name and address and I will make copies and send them to you.
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