Arimidex - Coping with the SE's
Comments
-
Molly -
I have pain in my shoulders, upper back, clavicle, elbows and hands, as well as an overall achey feeling (feels like I have the flu). The fatigue is horrible though I do walk about an hour every day. Arimidex kills my appetite so I'm at my lowest weight since age 12. I don't think that's good. And don't get me started on the depression issues.
BAG.O.HAMMERS.
I am thankful for it, though, since it appears to be working!
0 -
Enjoyful , if it's working - than that's great. Probably a dumb question, but have you tried massage for the pain? Or accupunture? Also a cream called Traumeel. Not sure if it's available in the US, but you come to Canada once in a while don't you?
Carol570 - do you have your pathology yet? That should help you in making your decision. However, Arimidex isn't something you need to committ to. You don't have to committ to taking it the whole 5 years. You can take it a month at a time. Despite what you see here, people with problems are the minority. The group here has solutions for just about all the side effects (except for Enjoyful's Bag of Hammers). You might not have side effects.
To all my American friends - Happy Thanksgiving!
0 -
Otter-for me, it would have made a big difference financially if AIs were classified as chemo. I needed but could not get any financial help during the surgery/rads/beginning of Arimidex time. I didn't qualify because I was getting or had not gotten chemo. All the financial help programs in this area are focused on chemo. What I heard often was that chemo is "expensive" and "difficult with the side effects" and other treatments "don't have the financial impact" or "the physical health effects" of chemo. So I have thousands of dollars in medical copays and such, a ruined credit rating, and surrendered retirement accounts. But, in the long run, it really doesn't matter what a treatment is called as long as it works.
Curlylocks-just to be the exception to the rule, I have been on Arimidex for almost 3 years now. I do have hot flashes, and do get stiff joints at times, but overall I have very little in the way of side effects. The depression I had as a side effect of tamoxifen was absolutely devastating. You are right-everyone reacts differently, and the only way to find out how any one person will react is to try it. No one forces us to take the pills, if the SEs are too much, we can stop taking it.
Kira-if your onc knows how badly your body reacted to chemo, he is probably is watching you very closely for side effects of the AIs. Has he/she considered taking one tablet every other day for a while? I've read posts from several women who started out that way to sort of ease into the side effects.
JanetinVirginia-the weight gain from Arimidex comes from the estrogen blocking effect. Just like many women in menopause gain weight as their estrogen levels drop, causing their metabolic rate to drop, so we gain weight for the same reason, just an artificial cause, and not so gradually. As with all things, there are some (lucky) women who lose weight during the change of life. Hence, "weight change" on the flyer.
Enjoyful-depression is a possible side effect of any hormone manipulating therapy. I stopped taking tamoxifen, got started on lupron to shut down my ovaries so I could take Arimidex-a much better option for me than continuing on tamoxifen and being totally non-functional due to depression. True, I had depression before I was diagnosed, but never had to increase my meds until I started tamoxifen, now I'm on 3 x the dose I was before! So look into medication or changing therapies. Maybe tamoxifen will be better for you than an AI.
Happy Thanksgiving to all!
I am thankful for treatment choices in this journey.0 -
NativeMainer, You a right my new Onc. is watching me closely. I had to convince him to put me on it now. He wanted to give my body another month at least to heal. It has been almost 3 months sinse my 1 chemo treatment, so I was worried aout waiting longer. He will be checking up after 1 month, and may make changes at that time. I have to say so far so good.
I hope everyone has a great Thanksgiving day. I for one am thankful for this site, great knowledge and friends.
0 -
Kathy044: Thanks for the link but it still does not convince me that the ALs destroy cancer. It says it weakens and shrink tumors but that means the bc is still in the body and it's cells can cause serious problems in other parts of the body, IMO. I also had no idea that ALs could be taken "before" any sugery etc. so this was interesting to learn. So although I am a big believer in Als, I would never have wanted to skip the lumpectomy, Chemo, and Rads and gone with an AL alone. I think they all are an important part in helping us try to survive bc.
0 -
Just wanted to stop by and say Happy Thanksgiving. I am profoundly grateful to be alive and well; and since arimidex is one of the things I can do to help keep me that way, I am profoundly grateful for it too. I'm getting a houseful of company any minute. Wish me luck with the relatives!!!
0 -
I have taken Arimidex for 1 year, during which my blood pressure went up, my cholesterol went up, and my bone density went down. I have to add, I eat a vegetarian/mediterranean diet, do daily yoga, including twice per week classes, walk outside or on a treadmill 3x or more a week and do some weights 2x a week. I have always been active. Hot flashes occassionally...I could deal with. Bone and joint pain was intermittent, but the last couple of months was severe and non-stop. Yoga hurt, walking hurt, I couldn't grip a tennis racket right. My onc told me to take a two week vacation and then try Femara. I'm debating this. My oncotype DX score was 7% chance of recurrance. I had a full mastectomy and plan a propholactic mastectomy within the next couple of months on the other side. I'm having trouble finding a good reason to continue this for another 4 years given the reduction not only in quality of life, but also my health (bp, chol. bone density) when they're not even sure I need it. ALSO....has anyone experience with life AFTER 5 years of aromatase inhibitor therapy. Does your body begin making estrogen again....or are you forever like that? I asked my onc recenlty and he said "Good question"....no one has really studied estradiol levels in women after they've completed the 5 years. Anyone know of any info?
0 -
Iben: I have been on Arimidex for 6 years and I love it when the Oncs answer with "Good Question". What they need to do is give us some "Good Answers" for our questions! I have no idea where I am heading with this Arimidex and my Onc's attitude is "What difference does it make. You're still alive after 7 years!" He really does not like the fact that I am a member of these bc groups. I think he thinks we do more harm than good giving answers to each other. All I know is I was one "stupid" bc patient before the ladies on here took the time to educate me about so many things my Onc did not want to talk about.
As for your question about the estrogen returning after quiting the ALs....from what I have read from other members, it must because the SEs go away and they start feeling good again. It is a question I would think "would" and should be answerable from the Oncs but they seem to like to take the 5th Amendment on so many questions we need answers to. I will be reading this thread to see if any of the members can direct you to where you find that answer for yourself.
0 -
I have to be on Arimidex forever. *pausing in the middle of my whine to bang head on turkey*
0 -
enjoyful: You are joking about Arimidex forever, right? Will there be any thing left of "you" if you get to take it forever? I am not looking forward to enduring it "forever" but I know my Onc would probably love to have you as his patient! He seems to think there is no reason ever to quit as long as I still am alive. But what kind of "forever" would I be enduring? That is the question!
BTW, you know I am the stupid of all stupids when it comes to understanding these diagnosis so would you or could you tell me if that is an error by yours showing Stage IV.? Your tumor was <1cm (very small I think) and you have one node positive like I do and my Onc says it isn't important for me to know this but he scribbled on a piece of paper I am Stage IIB and Grade 3. Is it the fact you are PR- and HER2- that throws you in a higher stage? Hope you don't mind my asking these questions but inspite of my Onc's determination to keep me stupid, I would like to understand more about this. Thanks for any info you are willing to provide.
0 -
kira...I have missed this thread for a awhile...just wanted to let you know that my breast burst too and it does heal. They tried sewing me up and it just tore as the skin was so thin. We waited until some thicker skin surrounded the hole and were able to close it and used lots of butterfly bandaids to help keep it that way. Wasn't pretty but once it healed, we were able to go back and repair it so it looks real good now.
In the meantime, It isn't very sexy but I wore my bra with a sanitary pad in it and a silky camisole in order to continue to keep my man happy. It was different thus rather interesting. Just a thought...it won't interfere with the healing just don't get overly, hum, physical.
0 -
Medigal -
Arimidex does, in fact, shrink tumors and can completely resolve them. It is the very reason it is the first line of treatment when breast cancer has returned as a mestatsis. It suppress estrogen expression and it has completely resolved many tumors for me and decreased the size of all but one. I was switched to the Faslodex, another form of estrogen suppression, which has shrunk the one stubborn one Arimidex did not. It would follow that it may well do the same for an early stage diagnosis although now used for the prevention of a recurrence, it would likely have the same affect on a tumor pre-surgery.
The anti-hormonals are given to stage iv patients to halt the cancer growth and killing it by preventing it from being fed - starving it from receiving the estrogen it feeds on. They have gotten many a stage iv gal to no evidence of disease and/or stable all by themselves. Chemo is the last line of treatment once all the anti-hormonals fails us and sometimes, they are brought back after chemo as well. Amazingly effective in cancer treatment. I remain alive and doing pretty well with stage iv breast cancer solely due to Arimidex and Faslodex. I do also treat with a bone strengthener as my mets is in my bones.
I manage the side effects - joint pain - eliminate gluten; anxiety and/or depression - medication; weight gain - change eating habits with smaller portions more often; drink lots of water; avoid over processed foods; and walk. No mojo issues as I just don't think about it and no harm is some slippy stuff. If the one you are taking is giving you too many se's to deal with, there are others to try and select the one that gives you the least issues for the long term.
I do not wish to debate the controlling/killing of cancer cells with Arimidex - my scans show me it does and my quality of life is pretty darn good - and I am LIVING with stage iv breast cancer - enough said.
Hugs all...LowRider
0 -
Oh and enjoyful isn't joking...we will be treating for the rest of our lives - it will be Arimidex until it fails, then another anti-hormonal, and another, and another until chemo is the option and then there are many of those and then we could end up back on anti-hormonals - treatment is very different in the stage iv world.
Tumor size isn't what matters at stage iv - it has spread from the original location to a distant location - bones, lungs, liver, brain - and can be very tiny but it is stage iv - no grading at stage iv either. What counts here is ER + PR - HER2- - good to go for certain and most common treatments. Triple negatives have less options but they are very effective. Triple positives have issues as well and different treatments. What counts is whether your tumors have positive estrogen receptors so that anti-hormonals can be used.
Medigal...stick with the way your onc wants to go - they are doing everything possible for you so that you don't end up joining the world of Club Mets.
Wish you all the best...LowRider
0 -
Lowrider54, Thanks for the info. It's rather sad when your DH says my they really need to do something about that area. And I don't mean the opening, rather the depression. It makes me happy to think it can be made to look better down the road. The pad idea with the bra I have been doing sinve the entire episode began, but somehow the sexy night wear wasn't thought about. I think I was just to tired as well as depressed, but it's a good idea.
I wonder why in stage IV the hormonals are used more, but in early stage BC heavy duty chemo is so often used.
0 -
Because they want to do everything they can to PREVENT it from ever becoming Stage IV (just stopping by, my house is still full of company (HELP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!)
0 -
I suspect the use of heavy duty chemo in early stage BC has to do with the short term treatment so the body can tolerate it. But with Stage IV women are going to be under treatment for the rest of their lives.
I could be wrong.
pam
0 -
Lowrider: Thanks for the education. Sounds like you know your stuff and what you wrote certainly does make sense to me. I am laughing now because of thinking what my Onc would have said: "Why do you need to know?" or "What difference does it make? "You" are still alive!". But to me it does make a big difference to understand the disease I am fighting and if there are alternatives if it gets worse. Sooooo that was one heck of a great explanation! You should change your name to "Highrider" because you ride "high" with great info. Thanks again!
0 -
I know the feeling! Mom came for Thanksgiving and told me the next day that the spice I put in the stuffing made her sick......so I said ever so nicely...oh I'm sorry I guess you can never eat at my house again cause I make you sick!!!! Like I needed that coment after cooking for hours with bone joint and muscle pain!!!
0 -
Here is my funny turkey story: I made the dressing the night before; got up early, stuffed the bird and tossed it in the oven while still half asleep. When it was time to serve, I couldn't find the thermometer that is suppose to pop out, and the turkey (the size I always get) looked so SCRAWNY, like it had no meat on it at all.....I didn't figure out until I was carving it, that I had baked the turkey UPSIDE DOWN! Good Grief!!! (the white meat DID stay very moist, so maybe I'm on to something).
0 -
Ruth, Many experts recommend roasting the bird breast down and turning it over for the skin to brown the last 30 min or so just to keep it moist.
0 -
Wow!
0 -
Medigal -
Sorry I missed your questions! Yes, Stage IV and I'll have some sort of treatment for life, just as LowRider explained.
I struggled with how to communicate my diagnosis in the signature line. I was first diagnosed in 2004 with Stage III - 6 tumors in one breast, 4/14 nodes positive. After chemo, bilat mx and radiation I took Tamoxifen for 4.5 years. The cancer returned August 2009 in at least one lymph node (maybe more) in my neck, above the supraclavicular area. So as far as mets go, it's not bad (can't believe I said that! haha!). That's why my diagnosis line now says Stage IV, 1 lymph node, less than 1 cm.
I have to say that of all the treatments, Arimidex has been the worst in terms of unrelenting pain and fatigue, with no light at the end of any tunnel. BUT, I'm NED today and for that I'm grateful.
And I'm not sure there will be anything left of me if I have to take it forever! Hahahaha. I'm going to talk to my onc on the 16th about an appetite stimulant since it's not getting any better. Blurgh.
E
0 -
Thanks Enjoyful for the additional info. I had no idea they could keep doing so much after one reaches certain stages. I need to sit my Onc down and SIT on TOP OF HIM! Maybe then I could get some concrete answers and would not have to bother you gals with all my questions. His favorite answer is "Well, you are still alive, aren't you?" Sometimes and many days I wonder if I am!
Thanks so much for educating me! Have a nice day!
0 -
Hi, I hope everyone had a nice Thanksgiving.
Enjoyful, I understand the Bag of Hammers comment. I felt so much better on Tamox. An Ooph and Arimidex was what was recommended for me. Its been a little over a year now and all I can say is that I had so many less side effects before I switched to Arimidex. As far as appetite goes, I also have trouble. I complained to my oncologist and she said "thats funny, most people complain about gaining weight" but she had no suggestions for me. I think its funny that everyone tells me how great I look and asks me my secret for getting so thin. I never want to make anyone feel uncomfortable so I just thank them but in my head I am thinking "its because I am fighting cancer and am on medication that always makes me feel sick"!!!! Still, I am grateful for the Arimidex and am praying that even though it makes me feel aweful it is doing its job!!!
0 -
Thank you, susand!!
I'm sorry that you're having the same SEs, but at the same time a bit relieved that it's not just me, and that it probably isn't psychological on my part. I was starting to wonder.
I get the same "that's funny" reaction from my onc, who says he's never seen anyone with such a severe reaction. If I get anything helpful appetite info from my onc on the 16th, I'll pass the info on to you.
Oxycodone works fairly well for the pain, though I do wonder about taking it long-term. I've been using it for 5 months now. That can't be good.
I wish you all the best!
E
0 -
Medigal -
I have a bag of hammers to lend you should your oncologist get snotty again. :-)
0 -
enjoyful, I agree that although I wish you didnt have the same SE's its comforting to know that your not alone. Sometimes I just wonder if I am going crazy and its all in my head, but its not! The SE's are real and I feel them!! It gets frusterating because I dont want to constantly complain to my husband because I realize I sound like a hypochondriac. So I just keep some to myself and them come to this site to either vent or see if anyone else out there is going through this.
0 -
Yes, they do hit you pretty hard with chemo at the early stages (debating whether or not I want to do through that again) - kill it, get rid of it, do whatever it takes so it does not spread, does not come back - it does work sometimes and there is never a recurrence. Surgery with clear margins followed by treatment could result in remission forever - still not a cure but as close as you get! Hitting the 5 year mark NED was great - I was pretty sure I beat it...sadly, at the 10 year mark...the beast reappeared. I did expect chemo, just like before and was pleasantly surprised with the anti-hormonals being the first line of treatment for a recurrence. The thinking is if they get it undercontrol with them, save the big guns if it spreads. No surgery - it is in my bones only and I dont' think we would want to start cutting up my skeleton...lol. Although, there are times when an isolated large lesion in the bone or lungs or liver or brain (the most common areas for it the spread) is operable, that will be done and depending, it will follow with anti-hormonals and/or chemo. Once it is in the organs, it is treated a little bit differently but one can still achieve NED. With all the variables with this crap, it is really no wonder there isn't a cure - it seems to act as differently as the different people it invades. There just isn't a 'one size fits all' for it which is why there are so many treatment combinations.
enjoyful...I used to worry about taking the pain meds and then I finally figured out that it really doesn't matter - if it helps me feel better, no matter what it is, I am going to take it. I didn't mean to butt in - at stage iv, it is different so I thought I could give medigal a pretty good idea. Oh, and I too had difficulty filling out the signature thing - 1/2 of it is my initial dx and the rest is the mets - I only had node positives at initial dx as once it was in my spine, they biopsied the spine and didn't go in for any nodes. It was confusing.
I know I sound like an advertisement but seriously, eliminating gluten really does do amazing things for the joint pain - I made pumpkin pies from scratch (including the crust) and the gluten free pie crust was the flakiest and best taking pie crust I had even made! My mini un-scientific experiment with spending a week eating the lunch cafe food with no concern for gluten was interesting - the joint pain in my knees returned. Within 4 days of going back to bringing my own lunch, the knees were no longer painful. My knees are the worst so I notice them more.
Anyway...big hugs to everyone...and ruth...I would help but I think it would be a Laurel and Hardy act...lol
LowRider
0 -
Hello to all. Newbie here. I discovered this community on Thanksgiving day and have found a couple of forums that fit nicely. I've yet to start radiation as I'm still recovering from lumpectomy, sentinel node surg and a second surg to expand margins. I've been told that hormone receptor test was positive and despite my surgeon telling me that this is good news, I was overwhelmed by rage and grief. Still don't understand how this is good news
. I am a HUGE fan of estrogen. I made a comeback after a diagnosis of osteoporosis 5 years ago with single minded proactive focus, bioidentical HRT, exercise, diet, and the pharmaceutical, Forteo. Please excuse a little self pity. As I read these forums I'm catapulted into a strange new reality. I know I'll get over it one shock at a time. I have alot to learn about the drugs that wage war on my hormones and I fear what "victory" looks like; no metastisis but...broken bones, depression, low energy, no libido (although that's already on life support).
Thank you for your indulgence.
0 -
susand -
That's it, exactly. Without this site, I would have gone crazy(er) a long time ago.
Lowrider -
No worries! You explained things much better than I could have. :-) My onc said that I could take up to 4 oxycodone/day, but I try to limit myself to 2. I worry about dependency/addiction, though at least I'm not up to "House" levels yet.
jp3 -
Sorry to hear that you're joining the cancer community, but welcome! Cancer & all its treatments suck sometimes, but this is a great site for information and support. There are some ladies here who feel great on the anti-hormonals, and I hope that you're one of them!
E
0
