For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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I just checked on Medscape and UTIs as well as General infection are listed as adverse effects of Arimide
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Mandycat...I agree that most MOs are not very empathetic about SEs. However they shouldn't have to personally experience it! They are the prescribing physician and have a responsibility to be knowledgable about SEs of these powerful drugs. IMO the problem is there are no other options so they just ignore us! We need to speak up for better treatment options. I'm going to go out on a limb and say if breast cancer was a male dominated disease we wouldn't have to decide between lowering recurrence rates and poor QOL. Hope I don't sound bitter! LOL
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oh dtad!
You don't sound bitter at all.
Don't get me started about how things would be different if breast cancer was a man's disease.
Do you really think the male population would tolerate taking a hormonal blocker for 5 to 10 years with a physician not measuring their levels? I think not!
Nor do I think the male population would tolerate taking a hormonal blocker of 1 MG for man 6 feet 4 inches and 220 pounds with the same dose for a man 5 feet two inches and 145 pounds.
I'm really surprised at how much this irritates me. I grew up in the 70s and never really considered myself a feminist. It wasn't until I had breast cancer that I felt the difference in being a woman.
I think my biggest anger comes from the statements "everybody on chemo does XXX". For example, is depressed, gains weight, goes bald… I typically respond with the question, "when you took chemo did XXX happened to you?"
Then I get, that they've never had chemo or they've never had cancer. And I reply, I thought so or you wouldn't say something that stupid to me.
I kept yo-yoing 3 to 5 pounds overnight when on the generic Arimidex. My oncologist team blew me off. Had my primary care physician not been monitoring my thyroid medicine and watching my TSH slowly creep out of range, I would still be battling that weight gain. Fortunately he change my dose, In the weight gain has stopped. I think going on the brand-name Arimidex has also helped.
You are so right. We must report the side effects and demand better care.
Coach Vicky
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but men do get breast cancer. Check out Traveltext from Au. Or the pinktober and stop Pink washing threads.
And my DH has prostate cancer. He has to have a shot every 6 months to keep his testerone down, the same as our daily pill for estrogen. Gives him horrendous sweats.
And you do sound very bitter.
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Hey ladies:
I have the weird urine flow on Arimidex. I have to sort of force it. And I can feel like I have a full bladder and then when I go to the toilet, I don't really have to go much. Then other times, I feel like I have a full bladder and I do have to go alot. Its definitely different from pre-Arimidex. I told a doctor this today and he looked at me like I had 3 heads. LOL.
I agree that women are treated differently than men. I actually brought my husband when I had an appointment with our family doctor so that he would take me more seriously. And he did. I had gone to him for that issue before and he blew it off. So the next time, I brought my DH and he took me seriously then. LOL.
A friend of mine had a mild heart attack, but when she was at the ER, she was hooked up to an electrocardiogram and then told she didn't have a heart attack but they took her blood. They left her alone. A man came in same time with similar symptoms, hooked up to electrocardiogram, examined by resident cardiologist, and not left alone and not left alone until his blood came back. Turns out he didn't have a heart attack. When my friends blood results came back, it showed she had had a heart attack and then she was attended to like the man who first came in. There was a clear difference.
Of course, it may be specific doctors and not a general attitude.
wallan
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wallan - I am on Femara and also have trouble urinating. It feels like I can't completely empty my bladder. I plan to bring this up with my gyn next time I see him. I'm sorry that you are experiencing the same thing but it's nice to know that I'm not the only one. Plus it gives me some evidence that it may be related to the lack of estrogen
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I am feeling so much better after reading about the changes in urine flow!
I thought it was just me. Now I can have a better conversation with my Oncologist Team.
Thank you.
Coach Vicky
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Spookiesmom...I don't think I sound very bitter. There are countless women on this forum who's side effects are not validated. I know some men get BC but it is a female dominated disease. We deserve better treatment options!
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sherryh16,
This is a reply to your post of August 29 regarding 5 vs. 10 years on Arimidex. My MO says that current studies show that there's no advantage to taking it longer than 5 years. (The advantages don't outweigh the risks.) I have a year and 9 months to go. He also says though,that there could be a different conclusion by then, so we will revisit the subject when I'm closer to the 5 year mark.
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Thanks Janett2014! I am in the group that sees no advantage to taking it longer than 5 years. 5 years is enough. I don't wish to be a guinea pig any further and suffer the numerous on-going side effects that don't seem to get the recognition they deserve. I'll take my chances and just live my life.
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Lack of estrogen will not CAUSE a UTI. There has to be bacteria present in order for that to happen. It's more likely interstitial cystitis, which is an inflammation of the bladder, with no actual infection present. I had symptoms of that yesterday. Had to go every 30 minutes and not much each time and pain. However, I also realized I hadn't been hydrating very well, so I started drinking lots of water and today, I had no symptoms at all.
I've been on Arimidex for 2 1/2 months now. No more SEs noted other than a hot flash now and then. I take the pill in the AM. I get one massive hot flash about an hour after I take the pill. Didn't want that happening at night. My sleep is also better since I switched to taking it in the morning. I had some joint pain in my hands, but can't say it's related to the meds. I'm 66 and have had some arthritis for awhile. I am scheduled for a bone density in December.
I am surprised at the range of pricing for the Arimidex. I pay $6.99 for a 30 day supply. I'm a bit confused as my medicare part D says it pays nothing, that I'm paying all costs. But there MUST be some sort of discount here!!!
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Is helpful to know that sleep is better if taken in the AM for you, Nancy. I am a finicky sleeper and started taking it at night. First night slept 9 hours, then the next night couldn't fall asleep, was wide awake until 1. Tonight is the tiebreaker. If I sleep I'll keep on the night schedule, if not, will experiment with mornings.I go back to work Tuesday after 2 weeks off, so need to figure out what's best.
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ed diseas4Hi Nancy...My urogynocologist told me that the lack of estrogen thins the lining of the bladder which makes it more susceptible to infection. This was before my BC diagnosis and I was just going through natural menopause. So I would assume an anti hormone would do the same thing. Good luck to all navigating this complicated disease.
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Hi Sisters,
I want to update you on how I am doing.
Due to authorization problems with my old health insurance (I've since joined a new one and am awaiting my membership card any day now) I had my Lumpectomy on April 27 and still haven't had after treatment such as radiation and AIs.
I'm going to do both and if the AIs give me bad SEs then I'll go the natural route with supplements.
Hippie Girl0 -
the first thing I thought when I learned about breast cancer treatments was there has to be a better way. I felt angry too. The treatments are so dehumanizing. But we have no choice at the moment. I couldn't tolerate the arimidex so chose radiation instead. I'm hoping to lose weight but it's so toug
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Mandycat, If you have a smart phone down load the app LoseIt or just do a note book. Right down everything you eat and the estimated calories. You will find yourself thinking about what you are eating and it helps you make better choices. I use the Loseit app. You want to eat the right amount for you height weight and exercise. I have been getting guidance from the evolutionist at the cancer center and a personal trainer at the gym that I joined. Having extra support has been helpful.
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I do not know what may have affected my BP, but it did drop almost immediately during 4 rounds of TC, and continues running lower than it was, I am taking anastrozole. I have been taking a BP med for the last couple of years, and it seems like it was usually 120-130ish/80 prior to chemo. During chemo it was often 95-105/60, and is now about 115/65. during chemo I often experienced light headedness, especially if I stood up - downward dog was out. I occasionally experience lightheadedness now. I have not been able to find out if there is any documentation on interaction of cancer drugs, BP drugs, and BP. I am having lots of joint issues in fingers, and quit taking the anastrozole a few days ago. I am looking into switching to the Brand Name Arimidex. Another person on this thread reported that joint issues subsided when she switched, but another person reported that it did not help.
2009 ER+ left breast. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction.
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I do not know what may have affected my BP, but it did drop almost immediately during 4 rounds of TC, and continues running lower than it was, I am taking anastrozole. I have been taking a BP med for the last couple of years, and it seems like it was usually 120-130ish/80 prior to chemo. During chemo it was often 95-105/60, and is now about 115/65. during chemo I often experienced light headedness, especially if I stood up - downward dog was out. I occasionally experience lightheadedness now. I have not been able to find out if there is any documentation on interaction of cancer drugs, BP drugs, and BP. I am having lots of joint issues in fingers, and quit taking the anastrozole a few days ago. I am looking into switching to the Brand Name Arimidex. Another person on this thread reported that joint issues subsided when she switched, but another person reported that it did not help.
2009 ER+ left breast. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. . Anastrozole 1 mg starting May 2017. Joint issues noticed immediately.
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Coachvicky - thank you so much for posting the information on purchasing Arimidex directly. I did not know you could do that. https://www.arimidex.com/ . I am looking into switching from generic to brand name, hoping the joint issues will subside. Joint issues started almost immediately with anastrozole. Sleeping issues (staying asleep/feeling rested) come and go since the anastrozole. How long where you taking the generic before you switched, and did it take a while for it to clear your system. I quit taking the anastrozole a few days ago. At the pharmacy, my cost for brand name was $618/90 days - $6.86/day, even though insurance was picking up $1,000. If I buy it directly, it is only $1/day. The generic was less than $5/90 days.
SEs.... So hard to get a good answer. Chase one drug with another? Endure the SEs, what is being treated is worse? Is it the estrogen suppression causing the SEs or something else about the drug? My oncologist is easy to talk to, and responds to my questions and concerns, never dismisses them, but I keep looking for answers whe does not have or alternatives. Yes.... joint issues, arthritis, osteoporosis can be expected for someone who is almost 60, but why take a drug that exacerbates all of this?. Hoping I don't get the UTIs or negative changes in urination that a couple of you have mentioned. I think my hair is thinning a little more, so far not dramatic. Still quite curly from the TC. I think care for breast cancer will get better as more women are in the health profession and as genetics are better understood
2009 ER+ left breast. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Blood pressure dropped during chemo and remains lower than it was (probably a good thing), do not know if TC had this affect. It dropped almost immediately during 4 rounds of TC, and continues running lower than it was, I am taking anastrozole. I have been taking a BP med for the last couple of years, and it seems like it was usually 120-130ish/80 prior to chemo. During chemo it was often 95-105/60, and is now about 115/65.
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Glad it helped BlueGirlRed.
Coach Vicky
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Help!!! I need advice or suggestions. I have been on a generic version of Arimidex for 21 months (6 mos. adjuvant therapy and for the past 15 months post surgery). I have also been receiving monthly injections of Fulvestrant as an ongoing participant in a research program. All has been relatively calm this past year with minimal side effects (the occasional hot flash or night sweat, some sleep issues and fatigue) Two months ago I began experiencing pain mainly in my lower back (at first I believed it was a sciatic issue or piriforma problem). I decreased my daily running and added more stretching and yoga but the problem persisted and the pain increased. Now I can barely run and even yoga practice is with causing pain. I also have had some joint pain in my hands and gained 5lbs in this time. I suspected an issue with the injections since pain was predominantly in the lower regions. My oncology team were concerned about cancer returning in bones. Scans were clear of any cancer. They believe that my issues are side effects from the Anastrozole. I have been off the Anastrozole for almost 2 weeks and have seen a reduction in the pain. It's not gone entirely but it has improved. I considered trying the brand name Arimidex but unfortunately my insurance would only pay minimal and my out of pocket would be $1350.00/90 day supply. I am truly considering stopping the meds altogether at the rate the issues were progressing I don't think I will be able to walk let alone run after a few more months. Any thoughts? I never thought I would start having issues so many months later. Thank you in advance for letting me whine!!!
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Go to the arimadex site, you can get 30 day supply for $30. Insurance isn't involved.
My lower back was hurting so much I had trouble lifting and moving right foot from gas to brake pedal. I thought mets. PCP sent me to MRI.
Was a whole lot of other things wrong, but not cancer. It is the first thing we think of, sometimes we're wrong.
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Yes, go directly to the website. It's a dollar a day. You can also ask for hardship consideration and get it for less.,
Coach Vicky
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Finished rads yesterday morning and took my first little white pill last night. Nervous about all of the potential side effects that I've read about. I'll be following this thread. My pharmacy gave me the Teva brand? Is this ok?0
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Teva has the least se for most of us.
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Thank You Spookiesmom! That's encouraging to hear!0
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Lunderwood - go directly to the website and buy it directly, no insurance involved $1/day. You will need a current Rx to send in when you sign up. https://www.arimidex.com/ . Going through insurance my cost would have been over $600/90 days I am going to make the switch from generic to brand name to see if it helps with the joint issues. I asked my doctor for a 30-day (vs 90) and will give it a try. I quit taking the generic about a week ago, but it may be about 2-weeks longer before I try the arimidex since I will be out of town when it is sent. Issues are primarily with hands, in particular the left thumb and right ring finger. But other fingers started getting stiff and I am dropping things more often. No back pain, no hot flashes, some sleep issues. I think acupuncture might help. At the last session a couple of days ago I asked her to focus on those areas. At the time, I did not feel any relief, but a couple of hours later I did get relief for a few hours. It seems to get worse overnight, probably because I am not doing anything. I think exercise and yoga help a lot, I definitely start feeling worse if I skip more than a day.
2009 ER+ left breast. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Blood pressure dropped during chemo and remains lower than it was (probably a good thing), do not know if TC had this affect. It dropped almost immediately during 4 rounds of TC, and continues running lower than it was, I am taking anastrozole. I have been taking a BP med for the last couple of years, and it seems like it was usually 120-130ish/80 prior to chemo. During chemo it was often 95-105/60, and is now about 115/65.
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I went directly to name brand beginning on May 9 due to the many posts I read about the generic, if you can afford the 30$ a month for 30 days go with that. If not, go with the generic brand from Teva. I try to do some form of exercise every day. Yoga has helped a lot. So far, mr SEs are manageable and I pray it stays this way. It's difficult to know what's from the Arimidex and what's simply from getting older. Sending gentle hugs and positive energy to all with love
Also want to add, that on days when I'm tired or too achy I give my body a rest and skip exercise.
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Is there a difference in effectiveness between the brand name and generic? Or is it just less side effects with brand name? My pharmacy gave me Teva and I just started yesterday.0
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From what I've read from others, the main ingredient is the same and has the some effectiveness. That's required by law. Manufacturers, however, can use different fillers. The different fillers may be causing more severe SEs for some patients.
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