Arimidex - Coping with the SE's
Comments
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IamNancy, I also was getting foot and leg cramps and it was from not enough sodium. A blood test confirmed this. So now I add extra salt to my food and it made a difference.0 -
tonic water can help with legs cramps too
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Ruthbru - a little gin with the tonic water probably wouldn't hurt either, huh?
. So......what time were you taking the pill originally and what did you change to? I always take mine first thing in the morning and sometimes wonder if my cognitive challenges would improve if I took it at bedtime instead.0 -
Yes; if the tonic doesn't work, maybe the gin will (I need the 'wink' face back).
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I take my pill after dinner - maybe I should move it to lunchtime but I don't always get them when I sleep... I will try upping my salt intake - but as for the tonic water -yuck! I tried it and its horrible..0 -
Second night back on Arimidex after a 2-week holiday before seeing my MO in routine followup. (I'd tried Femara with very adverse side effects 3 years ago and we thought it best I not start Aromasin, so returned to Arimidex.) I did enjoy the AI holiday and saw some improvements, but it was time to go back on.
Day 2 I noticed my depression level has increased. It decreased during the AI holiday, but I've been on antidepressants for some time. I've already semi-cried at sad things on TV this morning and my energy level is decreased. It comes with the territory for many of us, and I keep reminding myself I'm blessed to have the option to take this therapy. My MO did remind me that AIs are no guarantee (which I well know), and was fine with whatever my decision was. I opted to re-start, especially since I'm more than halfway through therapy and can re-visit my decision at any time. I have less than 2 more years to reach 5 years of AI therapy.
Exercise...here I come. I also plan to discuss how best to manage my depression with my PCP, who prescribes my antidepressant. I have a chronic illness which renders me unable to work. I'm sure if I had more outside contact my spirits would improve, but if I was well enough to "get out more," I'd also be able to work. Exercise will be a challenge with my chronic illness, but will have multiple benefits.0 -
Anyone experiencing trembling on Arimidex? Sometimes my entire body is trembling. Sometimes I just notice it in my arms and chest region. I do think it could be from the extreme anxiety I am experiencing as well, not sure. Anyone?0 -
Welcome dlz. Since youre recently dx, theres been a lot going on for you in general. It's an extremely stressful time and I wouldn't rule out the anxiety factor. I don't remember trembling being a side effect of Arimidex and I havent had that, but I could be wrong. You might like to check on a data sheet that comes with the packaging for side effects. Even it is, it would be wise to check with your doctor.0
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My two week holiday off Anastrozole seemed to help. I have not had a single episode of the IT band issues since stopping them. I did start back on the name brand Arimidex instead. And, on that, still no issues. Probably been taking it about a month now. She gave me a 90 day prescription. I'll probably go back to Anastrozole when the 90 days is up and see what happens. I've had many problems with the "fillers" in medications the last few years. I did check with the pharmacy giving me my prescription and they told me that since November of last year it's always been the same manufacturer of the Anastrozole they gave me.
I also took a break from my PT for my leg. Haven't been in three weeks. Had an MRI of my knee and they didn't see anything but arthritis and lots of inflammation. Got a cortisone shot in the knee on Tuesday and although, I still can't straighten my leg all the way, I am walking better. I start back to PT on Tuesday and am hoping I can get better so I can start exercising again and lose some of this weight that is so bad for me. Also, be able to walk a better distance (like anything) and be able to stand without pain in my legs
Next week is three years for me on Anastrozole. When I saw my MO this summer she mentioned my plan may change from 5 years to 7 or 10. So, at least now I feel I'm better able to cope with that. Although, my holiday showed me that my brain doesn't have to be so fuzzy all the time. I think that bothers me more at times. I've always had a great memory. I don't feel in such a fog as before, but that may change as I'm back on it longer. But, I guess it proved to me there's hope when I do go off it.
I hope you all are getting your SE's sorted out. I've never had the leg cramps or tremors or anxiety. But, everyone is different.
Best wishes to all.
Patty0 -
Patty9999 - I specifically asked my MO recently about the 5 vs 10 year regimen for arimidex. He indicated that because my chance of recurrence is very low that I would definitely NOT be required to stay on it more than 5 years. So, at least according to my MO (and they all seem to be different) if your chance of recurrence is low I'd be discussing it thoroughly with your MO if she wants you to continue after 5 years.0 -
As there is no evidence as of yet that we should go longer, I was glad to be done after 5 years!
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sweetandspecial - My recurrence score was very low. 8 on the oncotype dx. My MO said not to worry about it at this point. I've still got two years to go and a lot could change between now and then...... as we all know!0 -
Just fyi to those having SE's from Arimidex. I had nausea almost 100% of time on the generic Arimidex. I went back on the real Arimidex and the nausea went away. If any one saw the 60 Minutes episode on generics, they are sometimes questionable. I had to fight my health care provider to get the real Arimidex so good luck.0 -
Thanks you Musical. I have thought it was anxiety, but never did I feel like anxiety would make me so crazy that I shake. I think the anxiety must be a side effect of Arimidix and the shaking is a side effect of anxiety! I recently learned that my sister, DCIS breast cancer 11 years ago, lumpectomy and radiation, 5 years Tamoxifen they found a swollen lymph node that was biopsied and contains breast cancer cells. We have no idea how this happened. She doesn't have another primary cancer in her breast currently so I think even the doctor is a little confused. She sees the onc on Tuesday. I do have quite a bit of stress right now.0 -
Gentle hugs dlz913. BC and all it's hanger-ons is enough to give anyone the shakes. The drugs we take are a big deal and at the very least require some thought and consideration. Im sorry about your sister. No offence but I did laugh at your Arimidex/anxiety catch 22 lol. One thing for sure is BC has soooo many faces, and the best we can do is try and increase our odds against getting it back but researching and making lifestyle changes. For some of us those things will differ. Theres so much to learn in all this and Im not familiar with all that goes with DCIS but you'll find many forums here which will suit your particular needs in finding the info you need. Again welcome.0 -
dlz913 - I'm sorry to hear about your sister too
. One possibility for the cancer cells found in the lymph node is from her lumpectomy 11 years ago. I woke up from BMX with an extra scar I wasn't expecting because my breast surgeon had excised the needle paths from my DCIS and IDC biopsy sites. I wouldn't have thought of it but she said when they do the biopsy there's always the chance that as the biopsy needle goes through the tumor(s) and gets pulled back out it can leave cancer cells in its exit path which would eventually get picked up by the lymph system.
I do sincerely hope and pray she has a good prognosis and that there is a good treatment option for her.0 -
sweet, maybe I need to go and take a better look...theres been a recent thread here somewheres about the issue of "contamination" from a bio needle. I'm pretty sure the consensus is that it's not a risk. Cant remember where the thread is but it's been active. I can sure see why people could think it may be an issue.0 -
OK heres the link. I specifically looked at the what the Mods posted
Sorry cant get links working but if you just put this in the address bar...
http://community.breastcancer.org/topic_post?forum_id=111&id=752083&page=3
Edit again to say the link worked this time.0 -
Regarding the "contamination" issue, my mom was freaking out when she found out about 15 years ago that I needed a ST biopsy. She worried about this very same thing. She initially had me worked up about it. But, I talked to my surgeon about it and she told me the risk, if any, was very, very small. So, I put it out of my mind. Mostly because my mom also felt that what caused her cancer was falling on her chest at my sister's wedding. Just like her mother felt her cancer was caused by falling against the lawn mower.
There are many things we can, do and should worry about. This is not (at least currently) on my list of things I worry about. Like one of the posts in the link above said, she was given a clean diagnosis and years later diagnosed as positive. If the biopsy was clean, how could she have gotten it from a contamination if the spot had been clean? I feel we shouldn't look for trouble where it's a very slim chance Yes, there is always, Murphy's law, if it can happen it'll happen to me. But, I want to go on with my life. I feel I've done everything I could possibly do to prevent recurrence and so does my MO. I even had chemo when, waiting for my first infusion my MO showed up to tell me the OD score was 8 and I didn't need to do this. But, I was ready so did it anyway.
Anyway, my two cents worth. I think everyone is entitled to their own opinion on all of this stuff. Even at work, we have three people who have gone through this and we all have docs with differing opinions on treatments. We each feel good about what our docs have recommended.
I've rambled on too long. Have a great day. :-)
Patty0 -
Update on re-starting my Arimidex after a 2-week holiday. I noticed a difference during the 2 weeks off. Nothing major, but still nice, and the family noticed it as well. More motivation, less fatigue, a few no-migraine days. I have 1-1/2 more years on Arimidex and can take a short AI holiday if I need to in the future.
This weekend someone close to me hurt me by saying "You must be on THAT PILL again" after I started to "tear up" (not a full cry) watching a President Kennedy documentary on "Letters to Jackie." Although I would have had a few tears with/without Arimidex, I CAN feel that the emotional side effects (depression, moodiness) are back. Another family member made a hurtful mention of these (negative) changes, too, and THAT is what made me want to cry.
I also had a severe (treated) migraine, which is chronic (daily) for me for about 15 years. Sometimes I feel they blame everything on the Arimidex when much of my suffering is from my chronic daily migraines and the depression and fatigue that accompany it. When I explain this to them, it seems to fall on deaf ears. (I've been under the care of a top migraine specialist for 15 years, but some with migraine disease have little or no improvement. Even my neuro says that any attempts at migraine prevention are slim during AI treatment because of the lack of estrogen and AI headaches worsening migraines.)
During post-surgery treatment 3 years ago, close family were very supportive. I'm treating the Arimidex as an important part of my treatment, yet because it's a "little pill," not many outside of this forum seem to fully understand. Today my depression and mood are better (even joking and more content), but I believe that's because I'm between migraines.
Anyone else feel some people don't understand that AIs are still part of our treatment process, side effects and all? FYI, I've been on all the AIs and Arimidex is best tolerated for me.
I'd appreciate your thoughts. I'm off to exercise now while I'm not in migraine pain. Hugs...0 -
ByFaith - I'm so sorry you've had your feelings hurt by insensitive comments. Folks who haven't walked this road truly have no idea what we go through. And OMG, 15 years with daily migraines? Girlfriend, you deserve a halo, even if you do get a little cranky or weepy sometimes! I say, let the person out there who has never had a grumpy moment cast the first stone. At least you have a medically explainable reason for your moods - what's their excuse, huh?0 -
By Faith, sorry about your migraines. I went through many years of having diabolical headaches but not all the time. Typically for me it was "that time of the month" but there could be other triggers like certain food. Whether they were migraines I dont know but I know this...but a bad headache is a bad headache and theyre the PITS. PERIOD! Theyre also another thing people just don't get it about unless theyve been there. They can be extremely debilitating. I dont get them anywhere near what I used to. They started tapering off probably 5 or 6 years ago. Ive been on the A team for coming up 2 years and havent noticed any adverse affects in this way. I really hope you can get yours sorted.
Im afraid you are correct that people seem to think once you've done things typically associated with BC ie chemo, its all done and dusted. Usually its things they can "see" and those things are usually close to dx time, like surgery and time in hospital, bald heads and what not. Little bit of hair grown back, no more trips doing RT & they expect you to "get over yourself" and move on. They don't see the lasting affects some of us will experience for a long time if not for the rest of our lives. Eg, chemo induced neuropathy, and don't even get me started on LE. Dont get me started either, on the nerve damage from Lymph node removal and mastectomies, which give varying degrees of irritation probably for the rest of our lives. The fact is the AIs are a big deal and some of us have dreadful SE's. Ive heard that 30% of women go off them because of SE. THAT SPEAKS VOLUMES!
I find the best way to deal with anyone who purposely says hurtful things is look them straight in the eye, straight face, and say "lets trade places shall we". I dont shift my gaze for a VERY long time sufficiently enough to make them uncomfortable for their stupid insensitive comments.
BC is a life changing event. Plain and simple. You will make new friends and find out some never were friends in the first place. Family are included in this, but have more potential to hurt us because theyre the ones we want to love and receive love from. Unfortunately we cant pick our family but we can pick our friends. In either case, people who are toxic we are better off without.
HUGS0 -
Musical .... So very well said. You may not be able to tell from my posts, but it sounds like we're both spunky women when we need to be ... loved your story about not shifting your gaze for a long time. That's so me ... IF I'm "driven" to that point; otherwise, I'm very sweet. It surprises people when I am pushed to the limit.
Your reply was great. Thanks.
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ByFaith, hugs. My DH Nd daughter suffer migraines almost daily. They too are under the care of specialists. No people don't understand. Like insurance will pay for only 25 pills a month. So at least one week a month the migraine is not helped. My daughter's has been improving recently but no one knows why. LOL. One of her friends actually told her that those weren't migraines because she wasn't in bed with the lights off. Of course if she did that every time she got a migraine she'd never the house! So i understand that part. I also have a few late lasting SEs that aren't going away and a friend who thinks I should be over it it's in the past.... LOL. So we do understand and you can vent anytime. Much love.0 -
Thanks Moonflwr912 ..... what a strong, sweet and thoughtful woman you are! Your own dx, surgeries, treatments and therapies AND seeing your DH and DD deal with such a misunderstood and painful migraine disease seem to have given you a unique insight. You certainly know it's not easy to see someone you love suffer. You and they have had to bear so much and my heart goes out to you. I can see that the "side effect" of all you've endured has made you a kind, compassionate woman with a very large heart. Much love and hugs back at you. Happy Thanksgiving and blessings to you all.0 -
Thanks sweetandspecial .... how kind of you to take the time to reply. I re-read my original post and, as always, I feel SO guilty now having complained about AI side effects and migraines when so many of my BC sisters here have endured so much and are the first ones to lift up the spirits of others! My health issues pale in comparison. In fact, it makes me feel ashamed I ever complained.
I must have been having a solo pity party this morning. ;-) I do like your idea that it's okay to be cranky and moody sometimes ... haha .... and crying over something sentimental is no crime, right ? Happy Thanksgiving to you and your family. {{ hugs }}0 -
ByFaith. Just a note. I and I would have to say everyone on the boards really doesn't spend our time telling ourselves" oh- she hasn't suffered enough- take ten points off".... LOL we are all unique and what one person goes through is colored by each persons individual ability and talents. So what some might be ok with is too heavy for you. We get that. NO ONE HERE judges you. So vent away cause its important to you-today. Maybe tomorrow it will be better. Or not! That's how this stupid BC thing is. As long as we are not all knocked down at one time there's always someone around to help pick up the pieces of whatever crisis we get stuck in. It is the one thing I most love about BCO and the people on here.
Much love to all. And if I don't see you on here later- Have a wonderful Thanksgiving. Except of course for those Canadians who seem to insist on having T-day while the weather is better..... LOL0 -
So my doc switched me from Tamoxifen to Arimidex after I had my preventative hysterectomy. I have been on Arimidex for about eight months. I agree with the majority...I feel like I am 80 years old (reality, I will be 37 this February). Doc wants me to take the Arimidex for possibly 10 years. I am not sure I'll make it through the first year (starting to miss Tamoxifen).
I have the stiffness in the morning. All my joints seem to crack. And recently the swelling in my legs/feet has become pretty painful (other areas are swollen too, however, my feet hurt the most). I tire easily and have occasional nausea, insomnia, and a foggy feeling. I now need glasses, but my doc said that may be from having had gone through Chemo.
I take Advil pretty much every every day. I am going to pick up Claritin today (it worked well with Chemo).
I see my doc next Friday. If anyone else has any suggested remedies for the pain, please let me know.0 -
If you were pre-menopausal, with the hysterectomy you were crashed into menopause, (which would mess up your body for awhile even without an Al), so yikes.....it is going to take your body time to figure out its new 'normal'. My advice is (as always) to keep moving, start or continue an exercise routine that includes stretching, cardio, and strength training. The more you move it, the less it will hurt (starting gradually and working up).
* I just looked at your tag: chemo, Herception, rads, reconstruction, hysterectomy, anti-hormonals.... of course you feel worn out, how could you not be! Hang in there....time will help with some of it and also add retail therapy, facials, going out to dinner, & doing other nice things for yourself into my advice!
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Ducki, what ruthbru said!!!! You have been through a lot It will take your body a while to acclimate. The good thing is it won't be dragged over 3 or 4 years like mine did in regular menopause. Your body should start to settle down in a bit. Hang in there. If it doesn't get better they can change up the estrogen blocker and maybe it would help. But they all have SEs and you will have to decide which SEs you can live with. Much love.0
