For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Hapb,
Your life threatening issues are a true concern.. I am taking arimidex ( not generic) i have alot of achy joints and muscles and since starting in Oct my cholesterol jumped 20 pts higher!! So I understand your concern
What does your dr say? I see you had a lumpectomy ? Did you have radiation too?
I had a bmx with no recon, chemo and radiation. All of which has taken a toll on me, especially my energy level , I really havent had a chance to let my body totally recover from everything now Im on this horrid med.. I have forgotten what its like to feel vibrant..
Apparently your heart dr is concerned , so you need to do what is best for you.
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For good or bad, none of us can be in another's shoes. It's clear that we react to the same drugs in different ways. We all have different pain tolerance. And many of us have other medical conditions that enter into the equation. I stopped arimidex after 6 months and switched to femora. SO FAR, I feel better on it than I did on the arimidex. At age 71, quality of life is more important to me than quantity of life (in fact, I'd rather just not live to 96 suffering from dementia for 5 of them like my mother did). I stopped herceptin after 8 treatments because of neuropathy and I am not sorry. But I do have to be responsible for that choice.
Hap, I find your MO's comment to "just call 911" to be totally inappropriate. You clearly have a right to be scared. Every step of this journey is scary and you have had complications that understandably add to your anxiety. I have been fortunate to have an MO who has been totally willing to work with me to find the best treatment protocol. In fact, sometimes I think she reacts too quickly to something I mention in passing. (for instance, she had me in for a chest Xray and early echo when I told her I felt a little shortness of breathe).
I know I am very influenced by my friend Anne. She was diagnosed with stage 4 cancer in the summer of 2011. She entered hospice the week I was diagnosed in Nov. 2016 and died the week I started chemo. She was 73 when she died. But she lived those 5 years to the fullest. She traveled, she wrote, she published a book of her art work, and most important, she enjoyed her grandchildren who are old enough to have gotten to know her. One of the things I admired most was that she would have relatively short term goals, i.e., I want to live until... After wanting to live through the first Christmas, she wanted to be able to live long enough to vote in 2012 to cancel out a friend's preference. She was absolutely amazed when she got to vote in 2016 too. When chemo interfered with the holidays, she just told her MO, she was taking time off for what was most important. I hope I can live with cancer the way she did. She was afraid of pain but not of dying.
Only you can decide what your priorities are and what price you are willing to pay to achieve them. I, for one, will support and applaud whichever one you make, but I can't make it for you.
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My 5 yrs on Arimidex will end May 2018. My MO says that will be it for me. While I would love to never have to take a pill again, I find the closer to that time it gets, I fear not taking it. I hear some say their MO is saying 10 yrs. Any advice?
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HapB...I'm so sorry you have such a difficult decision to make. As others have said, it's very individual because we all have different circumstances. The side effects you are experiencing are pretty serious. IMO if you added the chance that they would affect your life expectancy the stats would be much different. I'm not trying to influence your decision but you did ask what we would do in your circumstance. Good luck and keep us posted. Happy New Year to all
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Hap ... I probably would not take it if I were currently your shoes. Your heart situation sounds very serious. Maybe in a few months, things will settle down and you can take it. BTW! Ihad a hard time taking it in my shoes! If you do decide to take it, insist that your Rx is only for the brand name. If in your shoes I would not trust a generic.
With all I have written, whatever you decide you have my support.
Coach Vicky
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LizA17, the latest news from the conference in San Antonio is now saying 7 years is recommended. Maybe ask your MO what he/she thinks about that. In my case, 7 years seems a lot more doable than 10.0
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Hello all concerned 😃I'm very happy to share with you all that I took my last arimidex tonight! Five years ...done! Completed, finished! No more!
Looking forward to tomorrow! Anxious for what changes if any, will take place!
Positive and supportive to you all!
Happy New Year 💕
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Congrats Lamp!! What a nice way to start the New Year!0
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Woohoo! Good for you!
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Way to go Lamp!
Coach Vicky
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CONGRATS Lamp
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leesad, how are you doing? I noticed our profiles are similar.. although you look much younger than me
Im taking the real arimidex pill.. have alot of aches but so far doable, even though I have osteopenia
so far I refuse to take boniva..im having enough side effects, also my cholesterol has climbed 20 points! praying by upping my calcium and vitamin d helps
I see my mo in Feb
And Lamp congrats and wishing you continued good health!!
And wishing that for all of us in the years to come!
Mamaoz
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Hi MamaOz- I'm doing ok thank you. Taking Teva brand since I started in September. I have joint aches and pain as well and also I can live with them. They're not debilitating. Exercise definitely helps with it. Just picked up my monthly refill a couple of days ago and it was still Teva but came in a different botttle and even though still Teva I swear my aches feel better. Could be in my head but I'll take it.
I had a physical with my primary six weeks after I started and my bad cholesterol was a little high also but he said my good cholesterol numbers were so good that the good outweighed the bad when he did the ratio. But then I saw a cariologist week before Christmas as my MO made me go. I was having shortness of breath and felt like I had pneumonia that lasted a month. My MO wanted to see me about this so he did an EKG before he did the chest X-ray and the EKG was bad. I got myself so worked up and in such a state of panic about going to get the chest X-ray that I could feel my heart pumping out of my chest. There was no way that ekg would be good. I said I'm nervous and my MO said I don't care your going to a cardiologist. (Chest x ray was fine). Sooo the cardiologist was not as ok with the higher cholesterol number as my primary was. She said yes it could be the anastrozole but we'll re check it and maybe go on a med to lower it. Now because of the ekg I'm doing a stress test next week and have to wear a monitor. What I really need is to calm the hell down and not stress so much which is easier said than done. Glad they are being thorough.
I'm starting Prolia on Jan 16. Am nervous about it but my bone scan before chemo showed osteopenia and like a hair away from osteoporosis so I'm getting the prolia. This was before so they think It will definitely progress on the anastrozole. My endocrinologist is actually taking the lead on the bones and he's the one treating me for that. He said there are studies that show prolia ups percentages of not having recurrence in breast cancer. He gave me study name but I can't remember it. My whole journey every time a doctor gives me a study and they say a few more percentages I've always seemed to jump on it and go ahead with it. Went with AI's with ovarian suppression instead of Tamoxifen even though I was pre menopausal due to better odds and then had ovaries and tubes removed as that had better stats than suppression. Hoping all of these little percentages here and there add up😉. I take D too but I think my levels are still low.
I just turned 50 four days ago which I'm still adjusting to the number. We had a blizzard on my birthday and we were snowed in which was fitting for my year. My son and husband made it nice and we will plan a trip after my exchange which is in a couple of weeks. My photo is from before BC and chemo. I don't look like that now but hope to get my hair back like that eventually but not sure if it will come back. I finished chemo in July so my hair is in the growing phase.
Hope you continue to do well!!
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I am on Arimidex and have been taking it since last June. I was diagnosed just before my 70th birthday. (What a great present, right??). I have had back issues for a number of years so am on Gabapentin and Tramadol for that. I was also taking Fosomax in conjunction with the Arimidex, but now am being switched to Boniva. We'll see how that goes. It's tough for me to tell what to blame for my aches and pains. I like to think it's my back, but who knows? I would ultimately like to switch to Prolia if my insurance will pay for it, as it's a lot more convenient to only have a shot twice a year than remembering these stupid pills.
When I first started on the Arimidex, I had hot flashes and night sweats but now they have pretty much disappeared. I also had insomnia but again, a lot of that before the BC diagnosis anyway. Now I have been taking Melatonin (3mg) and that has really helped. I still wake up sometimes to go to the bathroom but can go right back to sleep. Before Melatonin, I would lay awake for an hour or two, at least. For me, the worst part of it is the weight gain. I absolutely feel like a cow. I have been going natural and love not wearing a bra, but now that I can see my stomach, I'm not very happy. I'm really struggling to get rid of it. I have not gained any weight at all but it sure looks like I have.
My only other issue is that I now have a frozen shoulder. It's on the opposite side so no lymph nodes were taken. I do remember reading somewhere that it's either from surgery or the hormone therapy but I can't remember which. I also sleep predominately on that side, and that doesn't help. I'm trying to stay on my back but it's hard to break the habit.
I hope everyone can get their issues resolved. It's so hard to deal with all of this stuff. I hate putting more drugs into my body but I'm one of those who would prefer to do whatever it takes than to just do nothing. I have 4 little granddaughters and I definitely want to see them grow up
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Now that I think about it, every time I go to the doctor's - no matter which one - my BP is very high. Last time it was 178/78. My "normal" BP reading has always been low, like around 105/70. It never occurred to me that maybe it's the Arimidex. Guess I better check that out with my MO!!
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Hapb- When I had my chest CT post dx it found some incidental findings...thyroid nodules and an adrenal mass. My MO referred me to an endocrinologist to have these looked at since they weren't breast cancer related. He does sonos on my thyroid every time I see him to check the nodules on thyroid and no changes. He's done all thyroid bloodwork and all good. We haven't been able to get an MRI of adrenal mass since I have expanders in but I'm having a six month follow up CT scan actually tomorrow to see if the adrenal mass has changed at all. The first time I met with him he was very concerned about my bone health knowing I was going on a AI's. So he's become part of my team and he's watching me and handling the prolia and bone health. I see him every three months.
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wow, I really appreciate all the updates on everyone! Thank goodness for these forums!
Leesa d , keep me posted on the prolia, I know all our reactions to meds are a bit different .. and snickers mom on the boniva ...as I also have osteopenia on the verge of osteoorosis
I am supposed to be taking..the boniva and have 2 pills sotting on my dresser
My primary doesnt seem concerned about my elevated cholesterol after doing my ratios, but I am definately going to get more opinions after reading your news leesa
I could kick myself for not insisting on more heart testing before the end of year as it would have been no cost as my out of pocket was long ago met! Stupid...
My new coverage with work stinks its a high deductible (1500) /that needs to be met prior to ins paying anything, then out of pocket $5000
so if I have to pay may as well do it now,
I get the arimidex from eagle pharmacy for $30 a month
But anything else will be out of my pocket .. I have a year to go before I qualify for medicare..
Anyway Im grateful to have you all to compare notes with my next MO appt is end of Feb
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LeesaD ... Thanks for the update and belated Happy Birthday.
Like you my overall cholesterol was higher than last year but my HDL was off the scale awesome! When I first started the two Arimidex generics, I was just miserable especially with the weight gain. When I started the brand name Arimidex my glucose and blood pressure were high. Things have all settled down now after a few months including my weight, the night sweats, and hot flashes. It has been in the single digits in North Alabama and I have sure missed those hot flashes!
As much as I don't like exercise, I do it. I make my minimum goal 20 minutes a day on the treadmill.
Coach Vicky
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I have been on anastrozole for almost 5 yrs and will continue to be on it for years to come.... my MO said its worth taking for prevention. I also have severe osteopenia and the MO mentioned prolia but the side effects of jawbone deterioration scared me so I am not taking it as of yet... I am on a paleo diet and even on that I find it difficult to lose weight and I still get hot flashes at night when I sleep... the last few years I have had low blood platelets and wbc and also found I have non-alcoholic cirrhosis w/enlarged spleen... I really don't know if this is from the anastrozole or just me falling apart..
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IamNancy
I had a long talk with my dentist before taking the first Prolia injection. He shared if problems happened with the jaw, dentits now know how to treat it. He also shared that my mouth and jaw areas were in good shape and I should have no problem. That conversation really helped in my decision making. Maybe your dentist could help you.
Coach Vicky
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Could symptoms like migraine headaches start after being on the drug for a year and half? The first year and half I was blessed to be almost symptom free. Now things have changed.
I have a history of migraine headaches.. In the last few months I have been having more and more headaches. Lately its been every few days. Sumatriptan(Imitrex) helps me however, now that I need it more often it could cause rebound headaches and more problems.
And, I am in now a wonderful relationship and I am aware of the vaginal dryness which wasn't an issue before. It really bothers me.
I am not 100% sure the headaches are from the Anastrozole, but I keep a journal and there isn't any other consistent trigger that makes sense.
I have started to communicate with my Oncologist about this but I would really like to hear if anyone else developed new symptoms after being on the drug for a while.
Quality of life and risk? We all face this horrible dilemma. I need to go to my grateful place to get through it.
Please if you read this, share your thoughts.
Thank you
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After going back and reading a few pages of posts on this subject, I'm convinced that most of my issues are SE of the Arimidex. I do take the brand name and thankfully, the cost is covered under Medicare and our supplement.
I haven't started the Boniva yet. Frankly, I am afraid to because of all of the possible side effects. I had thought I'd ultimately like to be on Prolia, but since I have jaw issues already, maybe that's not for me. I have a recurring tumor (benign) that shows up in my jaw every once in a while and it eats away at my jawbone. I've had oral surgery twice for it and now it's been a little over a year since the last time, so we are hoping that maybe it won't come back. Unfortunately, I am in the percentage of high risk people for its return. So I really hesitate to even consider the Prolia. I have a dental appointment next week and will talk to my dentist about it. I have noticed that for the past couple of weeks, my mouth/jaw hurts a bit in the morning but I thought maybe I was clenching my jaw or grinding my teeth while sleeping. Maybe I can blame it on the Arimidex.
My shoulder/upper arm continue to hurt but I'm trying hard to just ignore it. Biggest problem for me is my lower back. Walking feels good but sitting gets the best of me. It could just be another bulging disc or it could be the Arimidex. Trying to work through that, too. I may have to give in and talk to my primary about getting an MRI to see which it is. I would rather have it be the Arimidex.
I find that i can cope better with all of these aches and pains if I can blame them on something. So I am blaming everything on the Arimidex!! If it does its job, I will suffer through this. It also helps to know that I'm not alone.
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Dear SRFLORIDA,
Welcome to the BCO community. We are glad that you reached out to our members to seek information and support. We hope that you will stay connected here. While you are waiting on some members' responses you may want to browse our main site. Here is information about Headaches as they related to hormone treatment. Let us know how we can be of help. The MOds
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Coachvicky - thanks - I sort of did talk to the dentist about it and because I have work to be done on teeth he didn't think it was something I should take at this time... when I go back next month, I will talk to him again...
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I’m giving up on the treatments. I’ve tried all three; Arimidex was the first. I was in so much pain and lost control of my hands and wrists. Broke a lot of stuff I touched. So I tried the other two (brain fog). Same thing. Not to mention soiling myself twice at work, headaches, depression, mental fog, chest and back pain. 😢 I’m a shadow of whom I was on these meds. I had stage 2 DCIS and lobular with positive lymph node. Now I worry about Mets to my lungs and bones and have back pain and jaw, neck, right arm pain, and can’t sleep. The sweating is ridiculous. I love in NH and stand in my bare feet in subzero weather and can melt ice. I have no desire for that super hero talent. No thanks. I’m exhausted and scared shitless. Nowhere to turn. I see radio Oncology tomorrow. So done. To make matters worse, my surgical site is now hard and hurts. I’m a labor and delivery RN. Cancer. You suck. My quality of life is more important than praying it doesn’t recur.
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MangoCat, my oncologist was pushing the AIs like Arimidex but I instead decided on taking Tamoxifen instead-- a wee bet less recurrence reduction percentage but for many the side effects are as extreme. I've been on Tamoxifen for over a year and tolerating it well...for me, side effects feel like minor aging-menopause. Also, I now exercise daily (even if just 30 minute fast walk with the dog) and eat mostly plants (Dr. Greger's 'How Not to Die' and his website nutritionfacts.org very helpful with nutrition). No more dairy, no wine/alcohol and limited sugar. All these things keep my weight in check and lower estrogen naturally.
Take care.
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Mango ... I am sorry this has been such a horrid road for you. I respect your decision and courage to stop. I see a Psychiatrist for PTSD from events last April reference to my BC. When he read the Arimidex information from chemocare.com, he stated (and I quote) "this drug is brutal."
Hap ... it is the various fillers in the generics that cause the side effects. You can get the brand name for a $1.00 a day from the company. IMO, your MO is closed minded to say that all the manufacturers are the same. The longer this journey I am on, the more critical I am of who provides my health care. I find I look first for a physician who will listen and understand.
Coach Vicky
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I started Armidex last April. I was fine for a few months then about 4 months after I started to get terrible pain in my arms and legs .I woke several times in the night and couldn't walk after getting out of bed. The oncologist just grinned and said to take paracetamol.I found this was not strong enough.Now I have been taking organic turmeric cucumin capsules with bioperine for 10days and I can honestly say the pain is so much better and it can only be these that are doing the trick. I recommend them to everybody. They are on ebay and are the strongest available from synergy-nutraceuticals
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The fillers are definitely different for each manufacturer. I started on Accord Anastrozole with very few SEs. After a little over a year and a half I developed severe tendinitis in my left wrist/hand. I started on Mobic (anti-inflammatory) and that lessened the pain to a due ache. Express-Scripts sent me a different manufacturer on my last prescription. I noticed after five or six weeks that the pain was completely gone. I asked my MO to send in a new prescription saying I only wanted Zydus as the manufacturer. The pharmacist at Express-Scripts was great. She absolutely agreed that I should only get Zydus because there was no reason to put up with the pain if I didn't need to.
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Iamnancy. oh my goodness didnt know you could get cirrhosis with our drinking, which I dont at all and bot would that piss me off
Im hoping my Mo will allow some tests to ease my mind the end of feb
Coach I agree with your accessment on drs
My mo is considered top in area but shes not bendable perhaps die to cancer center rules so my next appt should be interesting
Thanks also for info on prolia
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