Arimidex - Coping with the SE's
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My oncologist says it's a case-by-case thing at the moment. I was node negative, and am only mildly estrogen positive, so he wants me off after 5 years, as of course, it is a serious drug and you have to weigh the risk/benefit for each person (he also said that he wouldn't recommend it for more than 7 years to anyone at present). I sure wish those trials would come up with some statistics. Scary either way you go with it, as they are pretty much just guessing right now
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SunflowersMA - I know...I'm very fortunate to have such a "mild" case of BC...if there is such a thing! But I'm 90% estrogen positive, so the AI TX will be really important for me. I'm a "glass half full" kind of person, so I'm going to assume I'll have minimal SEs. Here's to the power of positive thinking!!
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I keep forgetting to ask my MO what % my ER is. Is/was it in one of the initial path reports? I'm guessing since he had originally been positive I would not need more than 5 years that the % is low but don't have a clue.
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Patoo - yes, mine was in the final pathology report.0
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The MO nurse called me back and told me to use Biotene. Uh,ok but what about the swollen tongue,maybe stick an ice cube in my mouth? What about going into ana phalectic shock? Any remedies for not breathing?
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I'm not sure at what point to be really concerned about side effects, if that's what they are. Night before last got hit with diarrhea, and once that ended I had episodes of faintness, and shortness of breath. I also have blood in the toilet bowl, but that could have been the insane diarrhea. All of these (with the exception of the blood) can be side effects of Aromasin. I'm supposed to go on vacation on Tuesday, I'm not pleased with all this!
Jenn
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Hi everyone.
Jenn, I hope you feel lots better B4 Tuesday. I would recommend a call to your MO if you're not feeling better on Monday. Good luck, and have a great vacation!
Since I've been on anastrozole just 4 weeks, I am really grateful to have you gals with more years to share your experience. Thanks!
Barb
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Thanks to Patoo and all you other lovely ladies who responded to my question about going off Arimidex. I have decided to go back and see my Oncologist and have a chat. My GP took over my care recently but he doesn't seem too sure about what to do, which made me unsure. I'm due for a mammogram next week, so see how that goes first.
Thanks again for everyone's help.
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I have been lurking and reading the posts here for a couple of weeks. I have been taking Arimidex for about 2.5 months. I had problems with increased bone/joint pain while going through chemo and it has continued since I started the AI. I suffered with osteoarthritis in my cervical and lumbar spine, hip, and knees for many years before I ever got BC. It is like the AI is making all of the pain from that much worse. I cannot take any anti-inflammatory drugs for very long because they really affect my stomach and I am prone to ulcers. Right now I have to take Lortab to get through my day.
Has anyone else noticed that the Arimidex makes existing areas of arthritis worse or is this just my imagination?!? I go back to my MO in June and I am thinking of asking him to try another of the AIs, but they all seem to have such simliar side effects I am not sure it is worth trying a different one. Thanks!
(edited for typo)
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If things haven't settled down by June, definitely try a different one. For whatever reasons; many people who have trouble which one, do fine on another.
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I looked up every ingredient one by one and it seems that the real Arimidex from the dr not the pharmacy in the little white bottle with the printing on it has a lot of things that are suspension agents but polyethlene glycol is considered to be almost same thing as Miralax which is a strong laxative so no wonder it causes diarrhea and then the other ingredient that concerned me was the titanium dioxide which the US FDA says is ok but in British Columbia its labeled as a toxin and carcinogen. Hmm..then I thought maybe they could switch me to Tamox but the Tamox thread seems to have some not so good side effects similar to the ones from Arimi so unclear since the activity is different.Glad some people are able to tolerate it,wish I could,getting depressed wondering what I can take cause i dont want any more cancer but obviously cant be short of breath with a swollen face for 5 yrs.
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what about Aromasin or Femara?
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I found out that I will have to be on Armidex for another
five years or even longer, My arthritis wont like it, but
if it keep the cancer from returning. I am questioning
some of it, Has anyone stayed on arimidex for good?
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I was wondering if those who have taken the Claritin for the muscle and joint pain remember how long it took for them to start feeling better.
Thank you...
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sherrybaby -
That's exactly what happened with me, and I too have to take Lortab to get through the day. I have ruptured disks in my lower back arthritis in my neck and the pain there has definitely been worse since the Arimidex, not to mention the areas of new pain. Ugh.
I started on Femara and had the same side effects. My onc switched me to Arimidex hoping for a different result but that didn't happen. I'm almost afraid to try Aromasin!
I have to reiterate that my hips and knees are pain-free when I'm on a horse. It's really a miracle and I urge everyone to give it a try through a therapeutic riding program. It's not a long-term solution but to have an hour free from hip and knee pain has made all the difference in the world, mentally.
Scoot
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@Layla2525.....so are you talking about the fillers in the Arimidex compared to the generic form of Arimidex? Those ingredients kind of scare me.
Be Well
Balsie
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Scoot
I can't remember - have you tried being gluten free? Acupunture. I had major back surgery many years ago - and all those "missing discs" SCREAMED at me, and I was unable to walk down stairs, literally. I could "straight leg" it up, but going down, well, I certainly felt those, ah, shall we call them "extra pounds."
I can not begin to explain what a difference those two things made for me. Beginning with gluten free - went from 12 Advil ( Ibeprofen sp?) a day to NONE. Zip. Nada. And Acupuncture, well, my knees don't hurt anymore - even when gardening! I don't "kneel" for anything, but stairs aren't a problem. No more "crunching leaves" when I walk downstairs. See acupunturist once a month now on a "maintenance" routine.
I'm in my 5th year on the A team ( Arimidex) and expect at least 5 more - my bone density tested yearly hasn't changed at all. That's mostly supplements AND good genes.
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SunflowersMA - what supplements do you take for the bones, that has kept your density good?
I would like to try gluten free, just not sure what does one eat???
I do eat organic mostly, and try to cut back on processed sugars, but now gluten where do I start? Ginger M.
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Sunflowers -
I did try gluten free. I had no appetite for about a year after I started Arimidex and what little I did eat did not contain gluten.
Acupuncture - can't afford it!
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Scoot
MANY acupuncturists will "barter" service, and have a graduated fee schedule - might check into Time Banks in your area about this too.
Ginger - the standard, 1000/500 cal/mag, a really GOOD strong multi vitamin, lots of Fish Oil, I use Nordic Natural liquid, 6,000VD3 ( and blood test is still only at 35! gotta be a malabsorption problem) and a MAJOR COMPONENT of bone density is GENETIC. If your mom, grandma had "good bones" most likely you will too.
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Crappy bones here - I'm on Zometa and mega-doses of Vitamin D.
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Thanks for the responses. I am going to try to just keep on keeping on. My MO had mentioned that if the SEs get to be too much I could stop taking it since I am only 6% ER+, but I want to do everything I can to make sure that I don't have a recurrence.
Scootaloo--though I am very sorry to hear you are having some of the same issues thank you for letting me know I am not crazy about it being mostly where I already have the arthritis.
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bones are still fine here, 3 more months and I am off arimidex. It's mostly in my shoulders and hips. My Onc stated that it will effect both sides not just one. She just had her 3rd kid what does she know how it feels.
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Ginger
goggle gluten free - there are a zillion sites & recipe books. Mostly begin by avoiding ALL wheat product, anything that has wheat in it. Easy...really.
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Belated TY's to those who responded to my question. AWHILE ago!!!
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Sunflowers - thank you for the advice, I did read that about the wheat products, it just brings me back to the fact that I try to lower the sugars, especially because my husband is diabetic, so for example switched from regular pastas to whole wheat or multigrain, and now with gluten you can't have whole wheat, the same with breads etc... so what can you have??? you know?
So far I am on the aromisin since Fri. still good in the emotional/depression issues, but having more wrist issues than I did on the anastrzole, also, has anyone been having floaters? I am having more of those than in the past not sure if its part of a s.e.??? Ginger M.
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Ladies, I was just reading on here about Aromasin and from the way I read it, people on Aromasin should have been on Tomaxifin first and then switch, I don't see just going on it like you would Arimidex for estrogen positive, post menopause. Any insight or comments on this? I am feeling like I should maybe go back to the Anaastrzole, like more beneficial?
Ginger M.
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Ginger, I don't know about needing to be on tamoxifen before Aromasin to have the Aromasin work. I thought all 3 of the AI's were pretty much the same as far as protection against recurrence. There are some comparison studies underway right now, looking at Arimidex vs. Femara for one thing, but those results won't be out for several more years.
I have read that switching from tamoxifen to an AI after 2 or 3 years on the tamoxifen might do a better job than just being on an AI from the start. Oh, well. Water under that bridge, I guess. I was started on Arimidex right after chemo because I was fully menopausal even before my BC dx and my med onco thought that was the way to go. AFAIK, she still does, for menopausal women. She thinks there are too many high-risk SE's from tamoxifen compared to the AI's (uterine cancer, blood clots, stuff like that).
Anyway... yes, I had osteoarthritis in a few areas well before my BC dx, and I think the Arimidex/anastrozole aches and pains especially affect those areas. My hands and wrists seem to be the worst lately, although some days it feels as if everything hurts. So far I've been lucky that I can knock the pain back completely with a couple of ibuprofen or one Aleve. That's how I sleep through the night if I feel achy at bedtime: one Advil and one Aleve. I'm pretty sure our mattress is part of the problem, because it's old and hard. I slept much better on the dense foam mattress on our boat last week. (Time for a new one at home, I guess.)
I had my 4-years-post-whatever recheck with my med onco yesterday. I asked her, "What do we do after next year?" (2013 being my 5-year-mark). She said the results from studies on longer duration of AI treatment aren't out yet, but she will probably recommend that I stop after 5 years. She said that's not the case with her patients who had more advanced BC (her example was lots of positive nodes; I had none). For early stage BC, she thinks the gain from extending the AI treatment past 5 years is going to be too small to be worthwhile.
For instance, she said, the studies in which patients were switched to an AI after they'd already been on tamoxifen for 5 years only showed "2% benefit." That's below my threshhold. She added that I could get that much benefit from increasing my level of physical activity. (Then she grinned and said, "Sorry!")
It was an interesting visit, although I admit it's getting scary to think I'll be stopping Arimidex next year. Maybe I can think of increasing my exercise level and losing those 15 "menopause" pounds as a type of therapy? She did sort of "prescribe" it to me...
otter
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ginger - I don't think there is a SOC on the "sequencing" of tamoxifen & AI's - still a question. That's what my docs at Dana Farber are saying - and I trust that over anything I read online.
ETA- pastas that are gluten free, in all health food stores: brown rice, quinoa, corn, lots of choices. I was never too fond of bread or pasta, so not an issue I've given much attention to...but they are available.
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Ginger, I am on Aromasin. I questioned my MO when I first started because the literature was saying Tamox for three years then switch to Aromasin. My MO said that studies have found that starting on Aromasin rather then switching produces better long term effects.
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