Arimidex - Coping with the SE's
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Pam, your trigger thumb should improve. Mine took quite a while, but they did get better, albeit one needing surgery.
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Thanks ruthbru, I will do some research and give him some resources. He only did a quick Google on flaxseed and that's what he came up with and for the wine I think he was not thinking in terms of BC because he mentioned it in terms of cardiovascular health. Guess I need to tune him in to treatment advice for BC patients as he may not be up on that.
Don't worry about me doing 1-2 glasses of wine. For me it would more likely be 1-2 glasses a month.
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Hi All,
I hope that you had great holidays! iam just catching up on the thread. Sunflower, huge congrats on your cholesterol levels - that is awesome! Sorry to hear about a number of you with trigger thumb - sounds painful. Is there such a thing as a finger/thumb splint? A number of us have gotten carpel tunnel with the Arimidex, myself included, and the splints at night really help. I always wake up with stiff hands (and body!) but once I get moving, things start to feel better. I now have distinct "nobby nuckles" which can't be good, but that's how it goes.
FYI, Lee, if you are taking a lot of calcium (my onc reccommends 1,200 units per day) to try to prevent bone loss while on Arimidex, that can be constipating. I take one packet of miralax (product with fiber ) to supplement fruits and veggies that I eat. Definitely find that I need something more than just my diet to even things out.
Good luck to all! Beau
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I too am seeing the arthritic -looking nuckles. I don't like it one bit! My hands are beginning to look like my Mom's and she's 87!
I too struggle with constipation, but eat lots of fruit and veggies, take magnesium supplements, stool softener and eat other high fiber foods. It helps quite a bit.0 -
Desny - water pills? What are they? I bought a blood pressure monitor at Costco ( where else?:) another thing I'm sure more exercise will help.
Patoo - I'm totally "biased" - my oncologists are at Dana Farber, and unlike most of the doctors I've seen all my life, I have AWESOME respect for them. Flax Seed Oil - I was told , avoid if possible. That's also because my docs know I am not good at their favorite word " Moderation." As in, yes you can have tofu, endame, "IN MODERATION" - after I told them on my first visit I have it everyday for lunch, sometimes for dinner too....
SO, I take Nordic Natural Fish Oil ( large bottle is, get ready for it, best price at Whole Foods, from the research I've done) - I attribute my wonderful new cholesteral numbers to that, Ruthbru's guidance and SLO-NIACIN, (HDL way up, LDL way down,) and going dairy free - extra virgin olive oil, no meat, no Dairy ( which we now know sent my vitamin D level down)
ARE WE HAVING FUN YET???
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For bone health, colon health, and they will also help with constipation issues, eat a serving of prunes a day (which they now call 'dried plums' in an effort to improve their image!).
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Adding to what Ruthbru says about prunes - AND, if you add a little water ( hydrating the prunes) and maybe some lime or lemon juice, heat it in a microwave - they taste better AND are more effective at, ah, getting things moving ;-) Cuz they're already hydrated, and aren't taking any moisture out of your system - DRINK LOTS OF WATER - also helps to get things moving.
Me, I've got the opposite situation - and give (daily) thanks for Immodium!
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Lee64,
Hi, I started getting constipation during chemo, I started taken Senna-S in the morning and at night and wala no more constipation it really works. Good luck that really sucks.
Pam
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Rocket,
Thanks I am hoping so. But I guess it is just one more gift from BC which just keeps on giving, I wish it would stop, like I am sure all of you do to.
Pam
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Thanks to all for the suggestions regarding constipation. I am ready to try anything and everything to see what works best.
Why do the words "edit" and "delete" appear on my posting? I still have not mastered either the computer or these boards!
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patoo - I understand that you're not much of a wine drinker, but I want to reinforce what ruthbru said. 1-2 alcoholic drinks per WEEK (not per day) is the current recommended maximum alcohol comsumption for all women to reduce the risk of breast cancer. My oncologist, GYN, and BS are all in agreement on this.
Good luck with the acupuncture!!!
Lee64 - "Edit" and "Delete" allow you to change or delete any posts you have written after they've been posted. Only you (and the moderators) can alter or remove what you've written, those buttons won't appear by your posts to anyone but you.
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Surgery: NSBXM Feb 2011 for ILC and DCIS - More lobular neoplasia and multiple foci ADH in same breast found at surgery - Oncotype DX = 18 (No Chemo!) - Anastrazole April 2011 - Exchanged TEs to silicone implants Aug 2011
Diagnosis: 12/8/2010, ILC, <1cm, Stage Ib, Grade 1, 0/1 nodes, ER+/PR+, HER2-0 -
SunflowersM:
A diutretic (water pill) is a pill to help flush out extra liquids from your body. My body is holding allot of fluids. Just another side effect of being on Arimidex for almost 4 years. These extra fluids or the built up of them adds to elevated blood pressure. I went to my gp today and I have to stay on these pills for 3 weeks to determine if it is helping to lower the p/b or if he needs to change the p/b medication. I'm happy to have the pills to help me but an wondering how much more I will have to put up with in the next 13 months I have left on Arimidex. Is there a scale somewhere that helps determine what we have gained in protection per year of taking them? When I asked my onc if I had to stay on Arimidex longer then 5 years, she said no, 5 years for stage 1 cancer.
I hope I answered your question.
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DESNY - thank you, thank you, thank you - I never thought of that being connected to high blood pressure. BUT OF COURSE, my sausage fingers ( since starting Arimidex 4 1/2 years ago) preventing me from wearing any of the rings I wore for years.
I wonder if there's a "complementary" way that creates the diuretic effect? I see all these teas in the store, claiming to be, but I wonder? Will google and see what I can find.
THANK YOU. I never made the connection. DUH, speaking of a brain on Arimidex
My doc is probably going to keep me on this much longer than 5 years- will know more next August, my 5 year anniversary!
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I have the opposite problem since going on aleve and all the rest...mypharmacist gave me bran buds and said hey will fix what ails you (she had assumed I would get constipated)...so I am really making sure I get water in to me...swelling in hand and amrs concerns me though....coming down in my hands but worried this will cause lymphodema....doing my best with massage etc. to ensure it does not happen.
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Hi Ladies............don't come on this thread, because I'm on Femara, so I kind of hang out there...........however..........since Femara is not on the formulary next year with Medicare, even though I was now approved to take it because of my Dr.s request....
Now, it is not cheap, and I don't want the generic.........................I come under the "patient assistance" program after checking with Novartis...........however, they don't allow Femara in that program.
I can get Arimidex from Astra Zeneca, under their PAS.............but it would mean changing my AI...........I am doing well on Femara as far as SE's go........I have them, but they have not taken me down...........at least not yet....................
That is the reason I am wondering about Arimidex.........I know a woman who takes it, and has no problems, yet other women on here, have had their share.........................looking for opinions,
If I do the Femara, I will be ok, until Oct. 2012......at that time because of the cost I will fall into the Gap/donut hole...........and the med will cost me $500.00 for the final 3 months of the year........................decisions, decisions, just passing it by you ladies...............would it be worth it, trying Arimidex.................???????????????? ....what do you think?
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Your welcome SunflowersM, I hope this info helps you. Sorry to hear that you might be on Arimidex longer. I am trying to cope with the meds for another 13 months. Its a crap shoot for sure. Please let me know if you find a tea that would act as a diuretic. After the next 3 weeks, I will get more detailed instructions on how often I would need to take the diuretic. My husband told me last night that my face isn't as bloated as it has been, he said it was nice to see my dimples again when I smile. So subtle. Stay well
Ducky, I wish I could give you advice but it is the same for me. I know women who have no side effects and others are a experiencing alot with Arimidex. Can you try it and if too many se, switch to something else?
Sandeeonherown, I am not sure if what your experiencing is bloating due to the Arimidex or a mild form of Lymphoderma but your doing the right things so I would point it out to your onc the next chance you get. Good luck
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Sunflowers: My onc told me that the reason for the 5 years is that the drugs don't have much affect after that. So talk to your doc. You may not have to be on it longer.
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LadyinBama and others, that's interesting what you report, and I believe it's been posted the same before, that after 5 years the drugs don't have much affect. Does that mean it no longer depletes/removes the estrogen from our body? Or is it also doing other things within our bodies as well to prevent recurrence? Just wondering. I'm sure one of you will have an answer for my simple brain. Thanks.
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Tea is a natural diuretic for me. I just brew regular tea but use like 6 family bags for a gallon of tea. Decaffeinated doesn't work. Hope I only have 4 more years of this stuff.
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My onc. is currently involved in a research study to weigh side effects vs. benefits of being on an AI for longer than 5 years. He said it is because discontinuing the drug removes some of the protection and women do experience an increased rate of recurrence. The question then would be: do the side effects, particularly brain, bone, heart health, offset the positives of continuing on the medication?
Don't shoot me I'm only the messenger
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Desny....i have been checking the lymphodema thing and have an appointment with my lymph-massage therapist this coming Friday...but the timing is too coincidental for me to believe it is not arimidex related..it is not just the left arm....though it does seem a bit bigger than the right....my knuckles are more noticable again but the bra issue has started up again....could just be retaining water because of adrug combination of heart stuff and arimidex...but can't have this water stuff going on with the heart issue either....good grief.
Ducky - since you are asking...were it me...and if I were on amed that was not causing me side affects....I would start puting aside $50 a month from whereever I could find the pennies rather than switch to something that may make life hell for three months....could just be because I am tiredof being on medications that I say this...then again, it is a crap shoot..you may have no side effects at all if you switch!
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About the 5 years on arimidex - my onc says that's because the studies went for 5 years. I don't keep up with this, but there might be some studies happening that are lasting longer than 5 and when we get those results we'll know more.
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I do not think it's true that the AI's lose effectiveness if taken longer than 5 years (i.e., the claim that they don't work as well after that). The reason I'm skeptical about that statement is because the AI's haven't been around long enough to know whether taking them longer than 5 years will be of benefit. I know of two studies underway right now, to test that question.
One is the "MA.17R" trial, which is testing 5 years of letrozole (Femara) versus placebo in postmenopausal women who had already completed 5 years of AI therapy. Here's some more information about the MA.17R trial: http://data.umms.org/scripts/trials/trial.cfm?ID=CALGB+49805
The other study is "NSABP B-42", which is comparing 5 years of letrozole versus placebo in postmenopausal women who had finished either 5 years of an AI or 5 years of a combination of tamoxifen + AI. Details of the NSABP B-42 study can be found on the NCI Clinical Trials website: http://clinicaltrials.gov/ct2/show/study/NCT00382070
I did some searching this evening, and found some discussion of the question about what to do after 5 years on an AI:
"Can the Duration of Aromatase Inhibitor Therapy Exceed 5 Years?" (http://www.medscape.com/viewarticle/726381) -- This is a very good article in Medscape that is accessible to anyone with a Medscape registration/subscription (free).
"Are aromatase inhibitors beneficial beyond 5 years?" (http://www.breastcancer.org/news_research/ask_expert/06_2010/q01.jsp) -- This article is in the "ask the experts" section of the BCO website.
"Aromatase Inhibitors: How Long Should Women Stay on Them?" (http://www.dslrf.org/breastcancer/content.asp?L2=3&L3=5&SID=130&CID=2103&PID=20&CATID=0) -- This article, on Dr. Susan Love's website, offers a good review of the issue.
The bottom line is that nobody knows whether taking an AI for longer than 5 years will continue to prevent recurrence, because there aren't any study results available yet to answer that question. I remember hearing about a study claiming there was no added benefit from taking tamoxifen longer than 5 years. Tamoxifen works through a completely different mechanism than the AI's, though; so I wouldn't necessarily expect the same results with both types of drugs.
Also, when I tried to locate that tamoxifen study, all I could find was this report, which was issued a long time ago (1995): http://www.nlm.nih.gov/databases/alerts/tamoxifen.html There could be something more recent on extended treatment with tamoxifen.
otter
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What about the study on breaks from Arimidex? I sure hope there are positive results on that one. Does anyone have any info on that?
Thanks Ginger
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Thanks for all the information Otter. My onc's mother was also an oncologist and is a BC survivor and she has stayed on Arimidex for 8 years now. We are waiting for more conclusive results before my onc decides if she will recommend Arimidex for me for longer than 5 years.
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I am on Arimidex and have some side effects, including joint pain and swelling in my legs and feet that I am pretty sure is not from my lymphedema in my affected arm as the swelling in my legs and feet only started after having to have an oopherectomy and being switched over to Arimidex. I guess I have assumed that there was really was nothing much I could do to get the swelling down, except try to avoid salt and drink a lot of water. I read a post on this site yesterday but can't seem to find it that talked about glucosamine containing shellfish. I think I probably have an iodine allergy or sensitivity due to some reactions I had when they put that iodine in my body when I had to have a CT scan so I am going to go off of the glucosamine to try to see if this helps get rid of the swelling. I also read that some are using water pills to help with swelling. Would this be bad if you are either suffering from lymphedema or are at risk for developing it or would it be okay as long as you keep drinking plenty of water? I guess another question I have is whether swelling is considered a normal side effect to Arimidex that you just have to put up with?
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I don't know how normal it is but I know I've had it.
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Gingerbrew, I would be curious about that, too. Ladies, I am going back on the dreaded Arimidex today after a 2-month break. I know I shouldn't have gone off it, but I did. Wish me luck - I will probably have nausea and vomiting initially like I did before, but it was only in the beginning, then it went away.
I will be on it with Fosomax this time, as I had lost a LOT of bone density my first year on it.
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This is just a quick check-in to offer a generally positive update. It's coming up a month and a half since I switched from tamoxifen to anastrozole (generic Arimidex), and so far, so good. I've been a little hesitant to post for a variety of reasons . . . a silly fear of jinxing myself, for starters, and an equally silly fear of pissing off those of you who are dealing with more serious side effects. But I think it's good to get the full range of experiences out there - even when the experience is mercifully boring. So far I notice a slight increase in sleep problems (more nighttime waking) and morning stiffness. No pain, thank goodness. And, of course, the dreaded dryness (ahem), for which I''ve invested in a jar of coconut oil, thanks to the tips here.
Getting the coconut oil took some doing. After looking around, I finally found it at Trader Joe's. It's a new item for them (or at least it was new to my store). It was new enough, in fact, that as I was checking out, the chatty cashier held up the jar and asked me, "So, what are you going to use this for?"
What do you think: should I have shared Sunflower's recipe? Just to see the reaction?
Fearless_One, good luck going back on the A. I hope it's gentler on you this time.
L
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Sandee, your right.........possibly I may find I get no serious SE's from a new AI, but as you say.......that is a crap shoot.........so far I am leaning toward either staying with the Femara "brand", or trying the Letrozole, possibly for a very short time, and seeing what happens...............don't misunderstand..............I get SE's from Femara, but not as horrible as some of the other ladies have exper;ienced....................
What I will probably do is just use the Femara I have, then try Letrozole for about 1 month at the beginning of the year, and if it causes problems, just go back to Femara, bite the bullet, and pay whatever it costs...................sometimes you just have to make a sacrifice, and do whatever gives you thebest QOL.................and with cancer, you don't have mamy choices...........thanks for your opinion, it is appreciated...............hugs.
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