For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Hi Bella - I too am an adoptive mother so never pregnant, never breastfeed etc. I had both ovaries and uterus removed at age 37 because I had polycystic ovaries (the reason I couldn't conceive). I know we have talked before and I continue to be appalled that you can't get a hysterectomy with your risk factors. However, even if you are able to do that, you will still be advised to take the AI's. Five years was the original standard of care but there is now info that suggests that for some women longer may be important. I am making the assumption that I won't be one of them (I was 72 in May) but who knows what we will know about cancer and its causes in 4 years. I go back and forth thinking I will take them forever and that at 76 I'll take my chances. I was on arimidex for 6 months and switched to letrozole in Dec. SE's are manageable if I exercise. I haven't made many diet changes - a quality of life issue for now- but have been able to hold my weight steady by walking more. Good luck. If arimidex isn't the right one for you, there are others.
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Thanks Taco. I have fired my MO and will see a new one in August. I am very encouraged about what I hear about her and how efficient her practice group is. They are very on top of things. I will talk with her about the hysterectomy when I see her. I also know what I need to do to make it happen.
I am having stage 2 surgery this Friday and then a colonoscopy after Labor Day. I am running out of time in 2018!
I pray that I can adjust to an AI. If I can I will take it forever if it really proves to keep m from having a recurrence.
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Thanks Peregrinela, I will definitely inquire. At the time she made it seem like 10 years that was the current researchrecommendation but I was still in shock at the time so there wasn’t that much discussion. I’m 59.
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Marchz- I too am 59, and scheduled to take anestrozole for 5 years, so for me until March 1, 2023. I try not to focus on the date, although some women count the days left to go. One day at a time for me, and so far it's doable. If the day comes and SEs are unbearable, I'll switch meds. Who knows what meds might come up in 5 years, we can only hope!
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I started Anastrozole in January, 2018 and the only side effect has been the hot flashes. I started exercising 3 days a week and watching what I'm eating and tracking it in an app called MyFitnessPal. I have lost 28 pounds since January. I'm having a bone scan later this week and am anxious to see those results since bone loss is a side effect. Right now I've been told I'll be taking these meds for 5 years.
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Thanks Bella2013,
It will be interesting to hear what your new MO says, keep us posted. Good luck in your upcoming surgery. I too have to schedule a colonoscopy since I'm about a year overdue for that. My regular dr told me to wait till I was done with everything concerning the breast cancer which I now am. Need it get it done while I still have my deductible met. As far as the Arimidex is concerned I have been on it since October. I really have been fortunate that I do not have many side effects. I have gained some weight mainly in my stomach area. oh yippee!! and recently have been tired more than normal.
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Yea Bella! We can be our own best advocates. I hope your new MO has a team- my care was really seamless from the first mammogram ordered by primary (who called me at 7:00 at night to discuss my biopsy) to surgery to rads to chemo. Primary gets all records from everyone and I see him the opposite every six months than I do my MO and BS.
I got away with the "poop in a box" instead of a colonoscopy this time. I stared at the box for days but once I read the directions, it really was easy. I have also resisted a dex scan for years (my MO didn't believe it when she realized that I had been refusing them for 6 years) but had one last winter - "bones of a 30 year old" in this 72 year old body although the arthritis is getting worse.
Good for you, Ellyn. I got off the original 5 chemo pounds but seem to be stuck although I admit that I'm not real motivated to make significant diet changes. Took 30 lbs. off with WW 5 years ago and am back to my quitting weight. I don't drink at all but haven't been willing to give up my ice cream and steak. I do like having my fitbit remind me to stay active though. I'm "friends" with two people from my "starting chemo Feb. '17" group as well as others.
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Took arimidex for 5 years,had breast cancer in right breast.Had chemo,and radiation ,and took arimidex.Then in May ,had a mamagram,and found out I had cancer in left breast,not in nodes thank god,but still had to have radiation.Dr. is putting me on aromasin.He said we have to try this one,but whos to say if this one works,the other one didn't,and this meds is more expensive..Im so up in the air about this,and trying so hard to read up on this...And now they want me to have a mamagram every 6 months..Im all for it.Thanks for the vent,and so glad we have this site..
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This is going to be TMI, but I know I can ask you ladies just about anything. Three times today after urinating, wipe, I see a tinge of blood - pink on the paper. I know, call my OB/GYN. But has it happened to others on Anestrozole?
I haven't had a period since May 2016. I'd say, what next, but I don't want to know!
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I had a bone density test last July. Because I am on Arimidex I asked that we do another bone density so we can mark where I started at. I have osteoporosis in my hips and lower spine already and have been on Fosamax the last year. The hospital said my insurance will not want to pay for another bone density test unless it's been 2 years from the last one. I've decided to go ahead and do the test and pay for it out of pocket so I know where I am and can monitor the effects of the hormone blocker on my poor old " Holy" Bones!
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I had a bone density test last July. Because I am on Arimidex I asked that we do another bone density so we can mark where I started at. I have osteoporosis in my hips and lower spine already and have been on Fosamax the last year. The hospital said my insurance will not want to pay for another bone density test unless it's been 2 years from the last one. I've decided to go ahead and do the test and pay for it out of pocket so I know where I am and can monitor the effects of the hormone blocker on my poor old " Holy" Bones!
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Traildweller, I was told the same thing by my PCP. It seems like there should be an exception if you are on a drug that affects bone density. It will be 2 years in a few months for me. I had mild osteopenia, so I am curious to see if there are any changes.0
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For a lot of medical issues, the insurance companies follow Medicare guidelines. Even if you aren’t on Medicare. This is one of them. Medicare will only pay for once every 2 years. Once you get into full blown osteoporosis then I think it’s once a year.
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My insurance pays for a Dexa every year. It's part of their preventative program. My MO said that even if they stated that they paid for one annually that she could request one based on me taking an AI and it would most likely be paid. It doesn't hurt to ask your insurance company.
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Thanks, Momma, I will ask my insurance company because I don’t think my PCP was even considering the fact that I am on an AI. I really don’t think many PCPs know much about breast cancer unless maybe if they have a family member that has been diagnosed. At least in my rural area anyhow.0
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CindyNY, I have been on Anastrazole for about 10 days so I haven’tDeveloped any side effects yet. Besides calling your Gyno also call your MO. Your MO might be able to tell you if it’s related to Anastrozole.
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Hi,just started same 2 weeks ago. No noted pain,etc....I seem more bitchy....lol,so I am coming on her to see if others have felt this,and any helpful hints. Best of luck,we are all in this together!
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Dear Rebezo,I too was terrified,reading the comments here have helped a lot....at this time this is the standard of care. My oncologist says it's just in case one little cell snuck through. I have been on it for 2 weeks,and really no side effects...but I do feel a little more “ bitchy".... so am reading more,and see if others have had similar,and any helpful hints. I'm a N.P....I am trying VERY hard not to read to much...Because it does scare you....if you look up the side effects of aspirin,or acetaminophen you probably wouldn't want to take them either! As a side note,my sister had BC 42 yrs ago,went thru a year of hard chemo...and still doing fine. All the best,we are in this together
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Yeah I was evil, mean, wicked and nasty for a few weeks. Then it went away, didn’t return.
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bella2013 - I see my MO on Thursday and will ask her. See if she defers to gyn.
DMB1949- I too was bitchy, felt like I was picking a fight for no reason; I also had a lot of brain fog, hard time coming up with words. It all seems to have passed. Even my aches & pains that seemed to increase with Anestrozole, I can attribute to my orthotics in my sneakers in need of replacing. Tweaked old ones; new replacements ready 8/20. You'll get through this!
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I am 48. Started Arimidex 9 months ago have not skipped a pill so far. SE are there but I have decided to suck it up. Not much of rules or regimens to follow other than walk as much as I can. Eat healthy as possible. .5mg Ativan at night 10mg celaxa in mornings. Yea claritin at night no other supplements. Cross my fingers i can continue another 6 yrs and a few months.
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I haven't heard yet if I have to pay for the entire bone density test yet but I did get the results. Previously I had osteoporosis in both hips and spine. Now, after 1 year of fosamax, my hips have improved but my spine has worsened. Calling the doctor to see if a different medication might help both. At least now I have a baseline of where I was when I started Al.
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Greetings all! I will achieve the 5 year mark with Anastrozole next April. So far, i have chosen to suck it up and accept the side effects, but it hasn't been easy. Bone density reduced, so now I take Fosamax. Joint stiffness in hands and knees some and goes. I've gained almost 10 pounds. More moody and anxious. Sleeplessness. The worst side affect was that I had low grade depression and I didn't like my behavior at times. As of June 2018, I've been taking Wellbutrin. Within 3 days, I felt like myself!
There have been recent news reports about TailoRX results. According to this study, women with my type of cancer and an Oncotype DX score in the mid range showed no benefit from chemo. Oncologist said I didn't get any bonus points for doing chemo 5 years ago, before study results were known. Was hoping I could stop Anastrozole sooner!
Oncologist told me about the Breast Cancer Index test. If i choose to have this done, we have to request it in about Nov, in order to have results by March/April 2019. Test is done on original tumor (why, I don't know) to see if an additional 5 years on Anastrozole might be warranted. I'm torn about doing the BCI, since I REALLY do not want to continue Anastrozole for another 5 years, which Doc is suggesting. At the end of the day, it is my choice to continue Anastrozole or not. Doc is very supportive of whatever I decide.
Do y'all have any experience or comments about the BCI, or about taking Anastrozole for 10 years?
Thanks and hugs to all my Sister Warriors!
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Hi all, add me to the anastrazole line. I should take my 1st one today. Terrified. Terrified if I do, and if I dont. Start radiation tomorrow, just got done with TC chemo. I simply am tired of if all. Reading here to see if there is hope taking this stuff and how bad it might be. Or not be. Guess its one foot in front of the other.
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https://community.breastcancer.org/forum/78/topics/790338?post_id=5247221
Pinklonghorn, this thread has some discussion about BCI. I had it done and I am glad I did because I had a low Oncotype, but these results suggest that I have a high risk of recurrence in years 5 - 10, so I am staying on the AI for as long as my body handles it.
You can also type BCI into the search feature for more information
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Thank you, Peregrinelady!
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Djt
I have been taking it since February 2018 and my only side effect so far is sleeplessness. I am taking Tylenol PM each night. I have had a small weight gain but I chalk that up to food finally tasting better after chemo
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Djt - give the AI's a try. There is a thread here on "doing well on AI's." Not everyone has SE's and/or finds a way to manage them. If the first one doesn't work, try another. I am feeling better and seem to be calmer on Letrozole than on anastrozole but you will find others who report just the opposite. I will be 76 when I hit 5 years - I'm not worrying beyond that this week.
For me, being active has been critical. I fired up the fitbit and friended enough people that my competitive side comes through. Good luck.
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Stawzie And Taco, thank you so much for your input . I'm starting it. I take a low dose of prozac and, oncologist said with This, less .symptoms are experienced, so maybe that and getting back to my walking will keep me okay. I walked 2 miles a day till half into chemo, then lost momentum. Always have been. Pretty active so I have to pick it back up. Thanks all for this helpful thread
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PinkLonghorn--I'm curious as to why it will take so long for your doctor to get your BCI results. I saw my MO in Sept at my 5 year checkup and he said he'd put in the request and to come back in a month for the results which I did. He said he's never had it take longer than 3-4 weeks for the results. My results were High Recurrence Risk/Low Benefit from continuing Tamoxifen so I stopped at 5 years. My Oncotype was 15 so I'm not surprised I fell in the "in between" category....about 10% get this result. I elected to stop Tamoxifen as my MO said I'd get MAYBE a 1% risk reduction with continuing but I could get a much bigger risk reduction by continuing my gym routine and making sure I got some fruits and veggies every day as well as keep up my Vit D levels with my 5000IU I take every day. It may be gamble but I sure do feel better!!
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