Arimidex - Coping with the SE's
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Sandee - one of the SE's of Arimidex is weakness, exhausted feeling. Surprised it wold start so early for you. Maybe it's your body adjusting to the fact that there's no more esptrogen - at all. There is still estrogen in our bodies when we take Tamoxifen. GIve it a few weeks for your body to adjust. It really is a process, and the first 3 months for me were the worst. As always, MAKE SURE you let your doc know what's happening.
Lewing - you are doing exactly what my docs wanted me to do ( even tho I was 62 at the time) but I wouldn't go off the SSRI I'd been taking for years, and couldn't take it with Tamoxifen, so started on an AI. Seems there is still an "open question" about whether it helps to take a sequential combination of Tamoxifen with an AI, and also the "order" in which it's done.
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My onc switched me to aromasin after 2 years of Tamoxifen. My hormone levels were checked and it was determined that I am post menopause. I had to attend an information class on AI's and then they prescribed Aromasin. Although ovaries don't produce estrogen anymore, we still have testosterone. We have an enzyme called Aramatase (sp) that converts our testosterone to estrogen, so an aramatase inhibitor such as Arimidex, Aromasin etc blocks that conversion from happening.
I am having more joint pain and fatigue on Aromasin than I had on Tamoxifen. I hope it gets better over time.
Beth0 -
An information class sounds like a great idea. If I hadn't asked questions, I wouldn't have learned squat about AIs from my onc.
I'll be checking in with him after two months on the Arimidex, then going back every six months; I'll also be getting a bone density scan annually. Does anyone have their bones checked more frequently than that?
Pickle, I hope it gets better for you over time, too.
Linda
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But it seems to me if our adrenals produced that much estrogen (via testosterone conversion), then it would be noted that women who have had oopherectomies would benefit. But there is no data that suggest this.
For now, I will take my chances and stay on the AI, but I'm on the fence since I had an oopherectomy.
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sunflowers- thanks ....I am having cholesterol checked on Friday,since that is a potential problem as well...and my sleep is messed up. Decided yesterday not to buy a house I ha decided to buy outside of the city because I am so tired I cannot imagine driving an hour each way....I am not used to being exhausted...most of my life post teenhood, I have gotten about 6 hours of sleep...now I would do anything for a solid 6 hours!!!...but I am tired...kind of like pre-heart attack in March tired....but different. Still able to walk 4 hours in a row but wow...tired!!! Could also be the zapped right into menopause thanks to the 4 months on tami too...could be a number of things..that's the problem, hmm? But this is the newest thing in my world and my oncologist said if I was going to have side effects they would likely hit in the first 4-6 weeks in his experience so...makes sense that my body is adjusting...I will continue at the gym anyhow:) thanks for the info
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Fearless, very interesting. I keep forgetting about the math site. I don't remember my Onc suggesting a test to see where my estrogen levels are....wouldn't that make sense before putting someone on any of the anti-estrogen drugs? Of course, logic does not prevail for some of the treatments it seems.
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yep...my levels were tested beforehand, which is why I was put on tamoxifen originally...I was not post menopausal when I started meds last November....whole new story this year! that test is crucial!
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BobbiMarie, yes, levels can be tested. I had mine tested prior to my ooph, but not afterwards. I am curious to be tested now, because I would like to compare levels to my chemo-induced menopause and levels after oopherectomy. Like Sandee says, it is an important test, as it can determine your meds.
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My estrogen levels were checked before my switch, and will be monitored periodically (at least annually; I realize I forgot to ask how often). For those of us who were pushed into chemopause, even if we look solidly menopausal, there's always some possibility of late recovery of ovarian function -- especially when we discontinue tamoxifen. Hence the checks, to make sure we're still menopausal. (This wouldn't apply if you've had an ooph.)
L
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Hello to all of you! This is my first posting (I think! )
Anyways, I am in need of some Arimidex advice. I have been on it since Mar. 2010 so not too long. (diagnosed ER + Aug. '09- stage 3 - chemo, surgery, radiation). I agree with one of the postings about it being a cumulative effect. I felt fine for the first 6 mo. or so, but it has gradually gotten worse. I now have muscle fatigue, joint pain, general fatigue/low energy and naseau. Yikes! I hope it doesn't get worse than this. I exercise a lot and have found swimming helpful. I will try to cut out the sugar.... never heard that one. I recently heard magnetic bracelets and getting the body more alkaline works too? I will try just about anything! I am open to any suggestions anyone has and thanks so much for the ones already there! 0 -
HI Lyncerock,
I am sorry to hear that things are getting harder as you go! We are all so different in how we respong to this journey, but I hope that you keep on chugging. I am only 10 months in to my Arimidex journey so am not sure that I can offer as much as other folks but here is my bits of advice:
1) My start was really rough with all sorts of joint pain, etc. It has actually eased up lately but I think that part of the reason is that I continue to tinker with my diet and medications to try to make the journey more pleasant. ie manageable. Lots of folks here on this thread have mentioned that cutting out dairy and wheat has really helped them with joint pain. I have finally taken the plunge - and by plunge, I mean that I have waded into the shallows, not the deep end. I have switched to only non-fat milk and yogurt, cut way back on cheese and red meat. I continue to take a muscle relaxer and NSAID, but I have been able to reduce my dose in half for both meds. I really think that for some of us, cutting out/back on dairy, sugar, fat content and wheat, can really help. I have not given up wheat, but definitely eat less.
2) Do not suffer in pain in vain. I am a big believer that we should take whatever we need to to make it through the 5 years in a reasonably positive frame of mind. So, in my own case, I have 3 herniated disks in my neck that went nuclear when Arimidex caused additonal inflammation ie. arthiritis. I took whatever pain meds I needed when I needed them. I never felt like I would be addicted because I was not seeking the 'high' that folks who are addicted supposedly crave, I only wanted to get through my day without yelling at my kids for no reason other than I was worn down by pain. I no longer need the pain meds. You know your own strengths and weaknesses better than anyone, but don't suffer unneccessarily.
3) exercise, especially yoga, mediation, walking or whatever makes you joyful needs to be a priority. Whenever, I stop moving, I suffer.
4) finally, I would crank up the " complaint meter" with your onc or primary care doctor. Get yourself checked out to be sure that nothing else is going on. Get your Vit D level checked, bone density scan, various blood work. If you have new pain, be sure to mention it. Don' t let anyone tell you that you are imagining things! (personal pet peeve)
I recently found out that my cholesterol is on the rise ( now over 200) which has never been a problem in the past. I may need to go on a statin since heart issues run in my family. I am working on my diet for that as well, but recognize that some of the side effects of these drugs can be serious and shouldn't be ingored.
You can also consider switching AI or going on tamoxifen if things are really deteriorating.
Best of luck! Beau
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Fearless One - Thank you for adding the suggestion of requesting testing of estrogen levels. I am not on Arimidex yet (that's next), still on chemo, but had hysterectomy/oophorectomy 5 years ago and still had ER/PR postive breast tumor. Unfortunately lots of body fat as contributor to estrogen and I did have 7 months HRT after hysterectomy. Now I will be asking for osteoporosis scan before treatment AND some baseline tracking of estrogen to see how well Arimidex works at reducing estrogen. Of course, it's time to work on the body fat too. This is the first time I heard of asking for estrogen level tracking, but makes a great deal of sense for decision making, especially if AI side effects are horrible. Maybe just seeing a reduction in estrogen levels on paper would make me more willing to deal with side effects if I have them.
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Lyncerock, yup, definitely cumulative. I'm in my 5th year - and I think what helps me the MOST with those aches, joint pains is: a gluten free diet, monthly massage, ACUPUNCTURE, ACUPUNCTURE, ACUPUNCTURE!!!! I wish I could describe the level of improvement in words. I went from needing 10 Ibeprofen or more a day, to NONE. I don't need amy pain meds.
I'm STILL tired, fatigue is an understatement - I don't know what to do about that, except acknowledge that it's better than a reoccurance of the Beast!
VitaminD test, as suggested is VITAL! I got mine up from about 20 to 48, and I hope it's still going up. Will be tested again next month.
While you're getting a VItamin D test, ask for a TSH ( Thyroid Stimulating Hormone) an make sure it's below 2.5. Chemotherapy was the "fainal straw" for my thyroid - probably should have been taking meds earlier, but am now and can't IMAGINE what the fatigue would be like if I wasn't.
Lots of things to check. GOOD LUCK.
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Since I was pre-menopausal before starting chemo (ER+), and was slammed into chemopause with first day of Taxol...we went with tamoxifen, only due to extreme one-day menopause. Tested menopausal/post-menopausal, stayed on tamox for 3 1/2 years, then Aromasin. I have read the AI's are mostly for the adrenal-produced estrogen, so no idea on the ooph-related hormones? Hair is falling out like CRAZY (has been on Aromasin), bone/joints ache, and doc says he'll have me on them for years (not the typical 5-year plan). Oh joy...it could be worse! BEST to all~~~juli
*Tamoxifen caused rare side effects such as retina damage and extreme thickening of the uterine lining (biopsies every 6 months, so far fine)*
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SunflowersMA, can't they help fatigue with acupuncture? I'm actually looking now for an acupuncturist. I have tremendous relief from joint pain with the Vit D3 but a couple times a week my hip flares up, I tnink from exercising, so I want to try acupuncture for it.
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Hello to everyone that replied. Thank you so much for sharing! Ok.... I have more questions:
Beau: I have cut down/mostly out dairy in my diet (about 6 yrs ago) when a Dr. suggested I try it to improve my sinusitis. It worked GREAT and I lost that last 10 lbs I kept trying to lose (don't we all!). I will definitley try the gluten thing. I'll have to do it secretly though... if my husband hears one more "I'm not eating that anymore" he'll have a cow. I practically eat vegan now. Definitely vegetarian.
I am so glad to be able to share. Esp. about the kid stuff. I get so short tempered since I am in pain and uncomfortable. I don't want to be that way with my kids. It's so hard. I started taking ibuprophen a little more lately. Has your Dr. communicated any concerns about taking this stuff long term? Or is it one of those "it could be worse" things?
I exercise and I TOTALLY agree about it helping.... short term.. but it does work. When I stop I suffer too.
I talked to my onco today and they are offering a trial switch to femara. He says it's common for women to switch back and forth until they find the lesser of two evils.
SunflowersMA: I go to acupuncture too! I love it and it helps, but I guess not enough right now. Is there something perhaps yours could suggest and I could take that to mine? She is really good and works with cancer patients. I have been seeing her since chemo and had no naseau or fatigue during rads. Also, how did you improve your vit. D levels? I take it now and get a bone scan every summer. Can you suggest a brand and dosage?
They are keeping me in chemopause because I am 42 and have a history of blood clots (can't take tamoxifen b/c of that) so I am also on Lupron so that I can take the arimidex/femara.
If any of you haven't heard of Kris Karr check her out. Her story is too long to type here, but she's an inspiration to all and I have taken some of her advice and suggestions incorporating them into my life and efforts to never have to deal with it again.
Thank you for your suggestions. I really apprecitate it and I look forward to checking back in!
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Patoo - I think the acupuncture DOES help with the fatigue - can't imagine how awful it would be without it.
My acupuncturist pays "special" attention to my KNEES, I fell last year and really "whacked" my left knee, also twisted right ankle (great combination, hey?) so all I can say, is lying on my back, it looks like I have two BIG porcupines sticking out of each knee. The effect is definitely cumulative. I now only go once a month, and it makes SUCH a difference. My massage therapist pays special attention to my hips - OUCH OUCH OUCH while she's working - and AAAAAAaaahhhhhhh when she's done.
So between the two - who I call The Bookends of My WellBeing - my physical experience is good. The fatigue - and what Astrazeneca called "asthenia" - well, that's still with me.
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Hey Ladies! I am at 4 years and 4 months and counting. My last big deal was allergies and not being able to breath. I have that under control after seeing lung guy, ENT, my thyroid doc and my oncologist. Ha! I have a bad knee since a big fall a few years ago and I have gained some weight since then mostly because walking is more difficult though I keep it up just less. I have gone vegan in the last two months: no face of any kind, no dairy, no oil of any kind and have lost some weight and it is dropping slowly, slowy and my knee is much better and now I am walking more. I feel like a dog chasing my tail most of the time.
What a journey this has been. Keep taking that little white pill.
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Does anyone know the scoop on arimidex and grapefruit? I've been abstaininig for the past three years because I know it's supposed to interfere with tamoxifen, but I celebrated the switch (and a very enjoyable ten mile run!) this morning with a big, delicious glass of grapefruit juice. Before I go off on a total grapefruit binge, though, I thought it would behoove me to check further. Both the CVS pharmacist and my quick googling indicated that it's OK, but I don't regard either of those as totaly reliable sources.
I love grapefruit. God, how I love it. It would almost be worth the arimidex SEs to be able to enjoy it again . . .
L
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lewing, grapefruit interferes with metabolism of a whole bunch of drugs. It's an incredibly long list, when everything is taken into account. Some drugs will be less effective; others will be more effective (the functional blood levels will increase) -- all depending on how they're metabolized.
I don't have that list handy, though. I'll see if I can track it down somewhere. I used to love grapefruit -- pink was my favorite; and I drank grapefruit juice over anything else. But I decided a few years ago that it just wasn't worth the confusion and potential problems, so I went off grapefruit completely.
otter
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lyncerock- yeah..kris karr's Crazy Sexy Cancer survivor series is great and her new-ish cook book is terrific too. I have gottem myself 90% off of red meat...mayb eeat it once every week or two weeks...usually when my energy is zero....mostly fish these days..whole grains only but I am guessing I need to giv eup carbs completely if I am going to lose any weight...I am used to being th eernergizer buny but my god...I am NOT the energizer bunny now...not at all...achy, tired tired tired..unable to make decisions...waffling all over the place rather than being decisive...tired tired tired....resisting the 'feel sorry for sandee' days....but very weepy....too empathetic...cry when others tell sad stories....so is the gluten free diet a good one for BC survivors?? heart patients?? Can't take any ibprofen or NSAIDS now that I am on blood thinners so hoping the bone pain passes me by!
otter- I am off of grapeftruit, soy, flax and one other thing (that I cannot remember as I type this..something else I eliminated from my life...good grief!)...better safe than sorry...oh yeah...melatonin!
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I don't have problems with joint pain, but the hair thinning, bad. Has anyone asked their MO if they could take Propecia? Men use it to decrease testosterone, and from what I understand it is the relative estrogen to testosterone ration that causes hair thinning. I am on Arimidex and between everything else, I would like to have my hair look the same. I have tried Rogaine and Biotin to no effect so far.... 3 weeks. When I tried Nioxin for a different type of therapy 10 years ago it was no help.
Thank you !
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Grapefruit is a 'not very often' thing, according to my oncologist.
Don't know about the hair, hopefully someone will chime in on that.
Sandee, I never go to sad movies or watch depressing TV dramas anymore.....I really feel like I have to guard your emotional health after everything one goes through with a cancer diagnosis and treatment....which is why I do fun stuff as often as possible!!! (That is my excuse and I'm sticking to it
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WHat is wrong with Flax? I have no clue?
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My MO said not to take the flaxseed oil. The studies are inconclusive as to whether it is good for ER+ BC patients. I was taking it for a couple years for dry eye, and THEN diagnosed with BC, so I have discontinued it.
Ruth, Hope you are doing well, you have such a good attitude:)
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I agree with Otter; I have read numerous articles stating grapefruit interference with medications and it's ability to often nulify it's efficacy.
In fact, it has been advised in people who think they might fail a drug test to drink mass quantities of grapefruit juice in hopes of passing the test. Personally, i cannot attest to this as I don't do recreational drugs
, but interesting, nonetheless.0 -
I take BP meds, and have for years. I was told to avoid grapefruit juice for the the BP meds, so was not to surprised when I found out about it with the meds for the BC. I do miss the fruit though.
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Does anyone have any ideas about hair thinning? I've tried biotin and Rogaine for 3 weeks but am now looking a little silly. I wish I could take that mop of hair on the back of my head and paste it onto my part line in the middle front. but I guess that would look worse. .
Thanks
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Bedo, Rogaine (Minoxodil) takes 3-6 months before you will see results if you even see results. It should say that on the box. Propecia is not FDA approved for women (last time I checked) because it has not showed any hair growth in women (unless given with oral contraceptive).0
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Hi stage1, I am doing very well, thank you. Mostly because:
* I exercise religiously, whether I feel like it or not.
* I stay really busy so don't have much time or energy to think about 'cancer stuff'.
* I do treat myself very well; I get good haircuts and color, wear good makeup, moisturizers etc. keep an updated wardrobe (otherwise known as retail therapy
), get together with friends as often as possible, and have started to do some of the things on the list we all have of "some day I would really like to _______(fill in the blank)''.*Seize the day!!
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