For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
-
denisethanks for your input! I asked my mo if she was going to take blood markers on my estrogen levels but she said no... I think thats ridiculous.. so im trying to get my pcp to do i
0 -
My MO won't do any estrogen levels for me either. I wonder why some check them and some don't
0 -
when I asked my mo she said sloan kettering doesnt check markers it either works or it doesnt!!! Meaning her hands are tied ..
0 -
I believe that it is medical malpractice to give a drug (such as Arimidex) and not test the results. My MO won't test either.
My Primary Care will. He did a base line test and will recheck a year later with a Mayo Clinic test he found for testing low estrogen levels. He knows me. He knows I won't take this unless I see results.
Coach Vicky
0 -
Hi everyone...I've said it many times before on this forum but...Most MOs know very little about female hormones. IMO there should be an endocrinologist or at least a gynecologist on the BC team. To give these powerful drugs blindly is just not right! To say they either work or they don't is ridiculous. To just wait and see if you have a recurrence to know whether or not they are working is absurd. Many on this forum have gone to either a PCP, gyno or naturopathic doc to test hormones. We need to be our own advocates. Good luck to all navigating this complicated disease.
0 -
What's the point of putting up with debilitating side effects if the drug doesn't work? I'm guessing that the MO's feel any reduction, however small, is worth the expense of our general health.
0 -
Well here I go (again) ... IMO this would not happen if breast cancer was predominantly a man's disease and men were given hormonal drug(s) there would be testing on the working or not working measures. Strange thing is that I normally do not see things as male / female issues or differences.
I think the average MO thinks it just some hot flashes and join pain. I shared with my Psychiatrist the drug sheet on Arimidex. His words about Arimidex were, "this drug is brutal."
Coach Vicky
0 -
My MO wouldn't let me start AI's until he checked my estrogen blood levels. I am pre menopausal though and am going with ovarian suppression and AI's (anastrozole) instead of Tamoxifen. He said MO's never used to check but he said there's a percentage of women who cannot be suppressed with the shots and the AI's are useless if that's the case. I was happy to see that my estrogen levels were virtually undetectable after
Zoladex so I was good to go.0 -
LeesaD...so glad you had your hormones checked. It is common for MOs to check levels to see if you are pre or post menopausal. However what is not common is checking levels while on anti hormones to see if they are working!
Coachvickey...completely agree that if BC was a predominantly male disease that many things would be different.e g I've said this before but my dear cousin passed away from BC 25 years ago at the age of 38 after battling this disease for 10 years. When I was diagnosed I was shocked that so little has changed since then.She had a BMX radiation and chemotherapy. Took Tamoxifen and was diagnosed with MBC 2 years later. So sad. Good luck to all navigating this complicated disease.
0 -
coach, so right on the male testing thing..
I fought my mo and got the real arimidex .. have yet to start as Im fighting to get a base line on my estrogen level..hoping either my pcp or obgyn will cooperate since my mo wont
Just ridiculous not to make sure its working..
I will keep you all posted
Oh I know the script calls for 1 mg tablets
I am very small 5 ft 96 lbs I dont tolerate meds well I am. Contemplating starting by cutting in half .. any thoughts
0 -
Mamaoz - the tablets are so so tiny that I don't know if you'd be able to cut them in half and get a good half dose. I don't know if it would be possible to cut it in half.0
-
My MO does not test estrogen levels, I had not heard of that. I am long menopausal- I wouldn't think there would be a change whether or not I was on the medicine. Is there?
0 -
Does anyone here have scalp pain/tenderness on top of head from arimidex? It feels like you had your hair in a ponytail all day and just took it down. It changes spots sometimes, and sometimes it's not there. My neck is "tired" my upper back has knots. But the soreness on top really drives me crazy. Goes away with excedrin migraine.
0 -
I am having trouble making a decision. I had decided to try anastrozole (which I started the end of July) and get the Prolia injection. I have osteoporosis already. The MO told me to get advice of dentist due to potential dental issues with Prolia. I went to my periodontist today who said I have no contraindications for the drug...but he is not a fan because he has seen and worked on people who had major jawbone issues with this drug. He said I have to weigh cost/ benefit...but how do I do that? How do I find out what the odds are of getting another cancer with or without the anastrazole? He mentioned taking Evista. I am so tired of trying to figure this out...I should say I'm also in pain from my second surgery- this one to close the surgical wound that opened with the internal radiation so I may be crankier than usual...but can anyone tell me how I can get a doctor to give me some odds? Do I need a second opinion? My tumor was only 1-2% Er+ I said to my husband tonight that I am tired of decisions and just want my life back...any ideas?
0 -
Barbmak I am struggling with this decision too. I am like you too ER- PR - but after surgery was 1-2% ER+. I have been taking it since August after stopping tamoxifen for endometrial thickening. (Tamoxifen was very manageable and I never mind "trying it" as my mo suggested). This AI though I have been struggling with benefit/risk, I stopped taking for about a week during my recent vacation because of the joint pain making me feel like I was 90! I was biking and walking and moving so much it was getting me down. I started it again as I was just scared and want to give myself the best chance. I am HER2 + so I am on some treatment forever verses you being on none at all if you stopped.
No one will tell you/us what you should do - risk benefit is for you to decide. The biggest question is IF you got a reoccurrence and it was ER+ would you be mad at yourself or just start the AI then and know you made the best decision at the time....you could take it for 5 years and have osteoporosis but have avoided a cancer but you will never know...
I took a pill today and I will see one day at a time...Taking a claritin too to see if that help with the joint pain.
0 -
tnd22...yes you can still have estrogen in your body well past menopause. Aromatase inhibitors should lower your estrogen levels but it does not always work that way which is why some people still have recurrences while taking it. As you said most MOs do not test our hormone levels so they are pretty much prescribing it blindly. IMO there should be an endocrinologist or at least a gynecologist on our BC team. Many women on this forum rely on their PCP to do it. I'm not against anti hormone therapy but I do think our hormone levels should be monitored while on it. Good luck to all navigating this complicated disease.
0 -
Dtad. I agree on the monitoring .. but even my pcp wont check for me so Im seeing my obgyn tuesday hoping he can weigh in on this for me.. its just so scary , damned if we do/ or dont. Quality of life. Osteoporosis, high cholesterol, joint muscle pain , possible jaw issues!! Vs keeping cancer at bay.. hopefully...
0 -
today is day #6 of Tamox. Other than minor joint pain comes within two hrs of taking it and dissipates soon. No other issue. No hot flashes bc I still get chills. I am almost delirious about it.
I got 7 day tamox script knowing I will be taking Arimidex as soon as I finish two more surgeries one of the two being total hyst. I know tamox is a lot lighter beast than AI. I still think I should be OK with AI. Yeah, my FSH and estradiol #s are definitely menopause level.
At the same time, I wish I just walked out of MOs office high fiving AI completion.
0 -
Good luck! Hope you continue to do well...
0 -
ok well I took my first pill (arimidex) so on to my next phase...
Mamao
0 -
Started anastrozole 9/1/17 - had some early SE's which have improved. Exercise helps. I've has some days when I felt wonderful! Think it's because the stress/effects of dx and radiation have subsided so there is some peace in being on the other side of this journey. Have no idea what's in store for me health wise, so trying to live in the day. God bless!
0 -
Thanks mickey! Good afvise!
0 -
I took Arimidex for about 2-3 months and initially thought it was OK - the hot flashes were bad but I got at most one per day. So thought I was tolerating it well. I'm on anti-depressants already, Effexor since I have had major depression (controlled!) for years.
It seemed to be going OK; but just OK..Think I was sliding downhill and my partner pointed out that I was really "flat". It was our 10th anniversary and usually I'm the one to go whole hog on a card, gift, etc for the occasion. I didn't do either and couldnt really work up much enthusiasm for the whole event!
Since then I have a little more insight; think I was getting depressed but since it wasn't catastrophic I didn't realize it. The hot flashes are becoming whole body, soaking and several times a day. I decided to go off of it as this year as given me a lot to contend with - besides the cancer my partner's brother died and now she is settling the estate. We work on fixing up the house a weekend or two per month AND it's 3 hours away. Lots of stressers. Will talk to Oncologist about trying another AI.
0 -
castigame,
yes, i'm getting arimidex directly from them for $30.00 per month. My insurance wanted $479.00 per month ! HA
0 -
hi Pollicakes! Do you know the difference between arimidex and the generic version of it
0 -
pollicakes, how did you contact them to get that deal I know its astra zenika .. with my insurance i paid 250 which is still a lot. . And my ins is going to change beginning of year ... so im nervous about that
Please advise! Pm if you prefer
Mamaoz
0 -
mamaoz,
It is on the front page of their website, they have a program - arimidex direct. Can't post the link but it is the company's website. Hope that helps.
0 -
CCNC - I have a question about Eagle Pharmacy's prescription form... not sure you know the answer, and I cannot be the only one in this boat... they are asking for insurance info. I have insurance that will reimburse me 80%, but only once I have reached my high deductible, so I never get reimbursed. And if I have insurance, do I still get the same $1 per day deal? Do I have to check the box or do you have any advice?
0 -
Have any of the women on this blog not used the prescribed Aromatose inhibitors and opted to try plant-based and other supplemental therapies? I was prescribed Anastrozole, but have not taken it, opting for the more natural option. I am not sure if I am playing with fire or saving myself from another future Dx of metastasized cancer if I should stop using this drug after 5-10 years.
0 -
I would try Anastrozole. You can always stop it if you have to many issues. I had to stop Als due to serious side effects. I tried DIM but I had some of the same side effects with that. My plan now is weight loss and exercise.
0
