For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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I will be starting generic arimidex in another few day. I have been on generic aromasin for almost 2 years with hot flushes and achiness in the morning or after prolonged sitting. Luckily that only last about 10 minutes. The reason for changing is my 3 month co-pay went from $20 to $660. The arimidex cost $13. I have osteopenia and had 4 doses of zometa over the past 2 years. Just started Prolia yesterday. Hoping not to get terrible SE from the new AI. My Onc feels aromasin has the least SE of the 3 AIs. I guess I will see.
Also just diagnosed with hyperthyroidism. May be why the hot flushes are terrible. That and the very hot summer we just had. I will wait 3 months and get the thyroid rechecked on the new Med ( just to see if the aromasin had anything to do with it) to see if any different. Hopefully I can lose another 20 lbs by then before slowing the thyroid down.
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2ndGen.....My SE are very manageable on Arimidex...I take name brand. The SE on generic were MISERABLE. I had check up yesterday, bone density scan....All is great so do not need any bone meds. My cholesterol on the other hand has risen to 268 so my Dr switch those meds and will check in 3 months.
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Hi there. I agree with Pontiac. I've been on Arimidex almost 8 years. The brand name is much better for me. I started with the brand name with no issues, was switched to the generic when it came out and then had SE's so was switched back to the brand name. I think it must have been the fillers in the generic that were causing my SE's. Pharmacy said they thought that too.
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ejamnn: i am having blood levels checked to see if possibly diabetic lebels, seems its been creeping up also. Waiting for results but have a feeling that this has raised sugar also?
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ejamnn, I just this month started taking metfomin. I started taking Arimidex in April, 2015 and my A1c has been steadily going up. The test I just took in August showed a 10 point jump from the test in January. My primary physician said it could very well be a SE from Arimidex. I'm taking one 500 mg extended release tablet per day. I've already seen my glucose levels drop (my sister is Type 2 and has given me the test a few times using her supplies). I'm not happy having borderline Type 2 but am happy to start taking the meformin simply because it may possibly help prevent recurrences. I had actually asked my MO for a metformin rx and she said no.
The other SEs from Arimidex that I have experienced are hair loss, definitely lost some skin tone (more wrinkles and skin feels kind of mushy), and stiffness after sitting for any length of time. I feel older than I am - if that makes any sense. But - hey - I'm still here so I'm dealing with it.
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Hi all.
I hope my profile is now on my post but wanted to ask a question about the AIs...what is the 'magic' to 5 years besides the drug company choice in setting up the study? From what I understand, we have total cell turnover in our bodies about once a year so if the key is to 'starve out' any rogue BC cells then why is 2 years not enough? I've asked my oncologist who responds that is what the study looked at and asked every doctor, tech, integrative person and no one can seem to give an answer which makes me even more suspicious about relying on 'the system'. Ironically, I discovered my lump...10+ years of mammograms did not and yearly doctor exam did not and had I not pushed that something seemed wrong with the lump and my overall feeling lousy then doctor wouldn't have ordered the ultrasound which did see it. (On another subject, IMO all women with 'dense' breasts should skip the radiation-affecting mammograms and instead demand the no-radiation full breast ultrasound now on the market).
Anyhow, I'm grateful that my cancer was stage 1 early enough to hold off AIs (and no chemo or radiation) until after final reconstruction next month but I've been doing so much research and digging around I'm feeling suspicious of our broken medical system and the concept of just take the drug and go away. I believe that I/ my body created the environment for my cancer to grow (improper diet + stress + not regular exercise + too many toxins in house and on skin + too much wine + hormone craziness heading into menopause caused by steroids taken for virus [grrr}) and that means my body can also keep more cancer away.
This I know and all docs agree...every drug as innocuous as aspirin or as strong as AIs (which are btw a form of chemotherapy) have side effect and many of them permanent. I figure I have another 40 good years of living to do and I'm willing to change my life to support my body/soil so cancer can't grow...do I really need to poison is for 5 years for just a few percentage points that the AI might reduce recurrence?
Meanwhile my hats off to my brave fellow cancer survivors...it's a challenging road we are on.
jp xx
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Side effects starting after 6 months???
Did "great" on generic for nearly 6 months, then developed a trigger thumb...which I attributed to an injury..??? Had a cortisone shot and it is getting better, so still hoping that was a sports injury...
Now have vaginal adhesions/painful sex (sorry for TMI) for first time ever!
Don't really want to talk to my male MO about painful sex...but am I getting SE's 6+ months into this???
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TrmTab, please don't hesitate to talk to your male MO about the painful sex. It may be hard for you but he needs to know this and perhaps he even has answers. He is the one you need to go to. I'm sorry that you are having such difficulties
HUGS!!
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TrmTab...Peggy is our official guru of all things BC and I agree with her...please talk with your MO...OR...does he have any female PA's you might feel more comfortable talking with? Though the PA would prob fill your MO in abt your issues at least you could start the conversation with a female?? Sex is important and affects you AND your partner. Hugs!
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Thanks for the reply...
After 20+ years in a WomanCare group ..all woman MDs.... my local hospital disbanded this group and now I have folks from all over and my "Team" are all men...one of whom lives 3 doors down from me!
Actually haven't shared the issue with my DH, he knows something is wrong as I am backing off...and was hoping to come up with a resolution/option
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HH, thank you for the kind words. I don't know everything - honest!
TrmTap, I totally get where you're coming from. I had my first female PCP about 5 months after my BC dx. My BS was a woman and I like her but I really connected with my PCP. My MO was a man my age and I'd have felt comfortable discussing sexual issues with him. But I'm 71 and don't embarrass anymore (at least about things medical). Give him a whirl. I'm sorry you lost your women's center. That's hard. Now that I'm in Spokane I have a male MO and male PCP. But both are nice.
HUGS!
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I am on Anastrozole, after 2 months my joint pain in my knees was almost unbearable, I was ready to quit then decided to try what my husband uses for his arthritis in his back and hands. Ginger cubes, it took about 3 weeks but my pain is almost gone just some small stiffness and I can live with it. I would recommend anyone to give it a try before giving up on the drug if you can. I get it from Thrive Market online. I eat one cube in the morning and one at bedtime. My pain was so bad at bedtime I was sick to my stomach and got little to no sleep. It worked for me so I wanted to share. Like I said it took about 3 weeks before I started to notice a difference but it is all natural and my doctor said it would not hurt to try it. It has made such a difference for me that I wanted to share.
OH!!! Had my 1 year mammogram and got the all clear, whoot whoot!!!!!
Best of luck to everyone and may your SE be minimal.
Helen
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Congrats on the clear 12 month screening 1957-2057. I had mine a couple of weeks ago and got the all clear too. It's such a relief. When is your next check?
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Congrats Helen and Smurfette on your all clear mammos. Mine was in May and a relief for sure. Interesting tip about the ginger cubes. I'm going to give them a try. I've been on Arimidex for about 5.5 months and have really noticed increasing discomfort the last couple months, so I came to this thread looking for advice.
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hi jpBCfree: I thought I read somewhere (and with my brain freeze post treatment who knows where and when) that statistically the most recurrences are in the first five years after initial diagnosis. But I have no idea if that's been substantiated or if it's still true, or if it's just for certain BC subtypes. Anyhoo, that was my understanding of the 5 year deal.
I switched back to generic Letrozole a few months ago after being on Anastrazole for 18 months, during which time I developed episcleritis in both eyes, and the Opthalmolagist and Rheumatologist I saw both said they suspected it was Anastrazole. But even after switching to Letrozole I had another episode of the disease so the Opthalmologist said it may be here to stay, regardless of which AI I use, because it is linked to weakening of ocular structures due to lack of estrogen. Some days you can't win.
Best to all.
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I started taking anastrozole about 2 weeks ago. I started having back pain. Has anyone else have back pain from it? And if so what other symptoms do you have?
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With anastrozole I had insomnia, crying outbursts and being overall jittery after 5 days. OD switched me to letrozole which I am starting today. Any comments on this?....so nervous to begin. Going to have TEs removed on Wednesday that I have had since July 7th. So anxious to get these things out and see the results.
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hi Novmoon - people seem to react differently to the three drug choices in the AI category, but I'm with you on the insomnia reaction to Anastrazole. I started with Letrozole for about 2 years, then switched to Anastrazole for 18 months to see if the joint pain, dizziness and nausea would be better. The dizziness and nausea went away with Anastrazole but not the joint pain - it got worse, and I started experiencing much worse insomina - waking 6-7 times a night followed by hot flashes and heart racing. I really struggled with that and because I work could not take sleeping meds due to the hangover effect. I switched back to Letrozole in April and the insomnia, while not gone, has been lessened so that I have fewer night time wakings with fewer hot flashes. I also seemed to have much worse vaginal atrophy and joint pain on Anastrazole. I have 1 year to go, so I will probably stick with Letrozole. I take it at night because the dizziness I had taking it in the morning got so bad I couldn't leave the house. Taking it before bed has pretty much eliminated that, except for mild dizziness in the early morning.
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Hi ladies. I started anastrazole last April and oyexperienced hot flashes, brain fog(couldn't remember words), some stiffness (wrists and ankles after sitting/lying for long periods of time which would go away after stretching). My shoulders were hit the worst. There were days it was hard to lift and hurt just to remove my blouses/tops. Deep tissue massage helped a little and I walked daily. In my three month follow up with my oncologist, he switched me to exemestane.He said I could stop anastrazole for two weeks too and get some relief but the symptoms would return but symptoms would peak after 3 or 4 months. He said too that he prescribed anastrazole because it's the oldest drug.
I kept my exemestane prescription but didnt take it yet. I remembered the Teva manufacturer of anastrazole recommended by some on this board . I called CVS and asked for Teva and they had it.
My symptoms all went away after taking Teva. It may have been the 3 or 4 month mark my oncologist mentioned too.
There is hope ladies!
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Has anyone had shortness of breath from anastrozole? It's possible I'm having heart trouble and it's not a side effect. (Waiting for echocardiogram results.) It happened about 18 days after starting to take it. Can't do anything but stay in bed.
Also after four days of taking it, GERD returned & hot flashes increased in intensity and quantity. I had both after menopause began, but over the years they stopped being so bothersome. The flashes I can live with. The GERD is miserable. If I continue with this medication, I'll go to the gastro doc.
I've had dry eyes in the morning for a few years and the anastrozole has made this problem worse. I feel like I have some thing in my eye almost all the time. Drops help a little bit. When (if?) I go back on it, I'm going to check in with my eye doctor.
My mood is unstable, but my life has been so full of crisis this summer that it seems logical. I actually didn't have a crying spell for 48 hours! Wowie. Then a little melt down tonight.
I haven't taken the anastrozole for nine days because of the breathing problem. It's still with me, but the GERD. hot flashes & dry eyes seem to be decreasing a bit.
...just waiting to hear about that echo ( echo . . . e c h o . . . e c h o . . . .)
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Blinkie, hugs, honey. I have a pacemaker and had heart problems from herceptin..those have cleared up. But you also had rads. Hoping you'll be ok with time.
The gerd is probably from the AI. I have to take meds for that daily, although once it was under control, i can skip a day in between.
You'll get through this too.
Much love
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According to my MO, I am currently on Arimedex as "protection" for my R breast as I only had a L-MX...so when I think about what to do with my R - lift/reduce or P-MX...If I decide to have a Prophylactic MX, does that mean I can stop the Arimedex??? ...of course I will ask my MO, but was wondering what folks have done.
I "only" had DCIS, so is that my be part of his logic???
Not happy with the idea of either lift/reduce (the pictures of that surgery are brutal) or P-MX, but if I get the added bonus of no more Arimedex, that might push me to the MX.
Getting tired of all these soft tissue aches and pains, and trigger thumb.
Thoughts?
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Moonflwr912 - Thanks for the response. I've now had an echo and the results are that nothing has changed since last year, so my valves are fine and the heart is not causing the breathlessness. I do think it's the meds, which I stopped 11 days ago. What did you do to get it under control? I've stopped coffee & chocolate. I've avoided citrus and raw onion for years. I'm concerned about taking prilosec, since it also thins the bones.
Port Washington - what a charming place. We saw one of the big sailing ships there once.
The GERD is awful! GERD & hot flashes appeared when I went through menopause about 15 years ago. I learned how to deal with both problems. Plus, over time, they lessened. But with the meds - boom! Ack! It's worse than ever. Yesterday I forgot what I was doing and ate a very small honey crisp apple. Big mistake. I'm deciding to believe we'll be able to get it under control. In other words, I'm trying to not think, "Omigod-I'm-miserable-and-GERD-causes-esophegeal-cancer-I-can't-take-this-drug-now-the-evil-stalker-cancer-will-return!"
Tomorrow I see my primary care provider for more fun and games.
Thanks for the encouragement. Comfort & kindness to all . . .
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Trmtab,
I have had BMX and was prescribed Arimidex for 5 years. I was told it prevented cells forming in other parts of the body, not just breasts. I was on for 5 days then switched to Femara due to SE but have not started yet. Just had TEs out and implants put in yesterday. Hope this helps a bit.
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TrmTab I believe the short answer to your question is no. Even if you were to have a prophylactic mastectomy on your remaining breast your Oncologist would more than likely still recommend an AI for at least 5 years. We can still get breast cancer after mastectomy and AI's are a big weapon in our arsenal against ER+ breast cancer recurrence or mets. I know the side effects can be terrible. I feel your pain. Thinking of you. Donna.
Perhaps you could talk to your Oncologist about trying a different AI if the side effects of Arimidex become too much. Quality of life is so very important. Of course you absolutely have the right to decide you don't want to take an AI at all but you should discuss percentages with your Onc first.
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Yesterday, I had my first mammogram since my diagnosis last year.
I had anxiously waited for this mammogram, although I was scared to death at what it might show.I had a hard spot, not a lump, on my cancerous breast. I thought it might just be thickened skin from radiation, but when I told the mammography technician about it, she marked it for the x-ray. After she had finished all the views, she escorted me back to the waiting room while the radiologist looked at the results. In just a short while she returned and said we needed to go to the ultrasound room. My stomach dropped. This was déjà vu all over again.The resident tech came back and ran the ultrasound puck over the offending spot, said he felt there was nothing to worry about, but he would get the radiologist to come and check it out. She did, and said it was indeed, nothing but an engorgement from radiation. Whew, dodged that bullet!
I then met with my SO who gave me a thorough physical exam, noted the hardened spot, also said nothing to worry about, and she already had my mammogram results which showed No Evidence of Disease!
Back on August 11, I put a post on FB which said "I just used my boobs to get out of a speeding ticket." This was part of a Breast Cancer Awareness social media stunt. To anyone who responded, I privately messaged them and told them it was a Breast Cancer Awareness joke, and they had to respond on FB with one of several crazy statuses to keep it going. What I thought was really funny was how many people accepted that statement as something I might probably do. There's a message for me in there somewhere.
As we are about to enter Breast Cancer Awareness Month, I cannot emphasize too strongly that MAMMOGRAMS SAVE LIVES! One year my mammogram is clear, the next year, I have Stage II, Grade 3 aggressive cancer that has already spread to three of my lymph nodes. If I had waited another year, I might not be here to write this post. Tell your loved ones, tell your friends.
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TrmTab--I had a left mastectomy and a lift and very small implant on my right for symmetry. It was one of the easier surgeries I did. I was back to driving and running errands within a week. I couldn't lift heavy stuff but at least I wasn't on pain meds or anything. I had the "donut" incision. I don't know what type of incision you would need but if it's anything like mine it wasn't brutal at all. It was same day surgery. I went in about 7am and was home by 1pm. I'd asked my SIL to come stay and help me for a week and she ended up going home on day 4 cause I could pretty much do everything myself. I was pleasantly surprised with just how easy it was since I felt my mastectomy was particularly difficult due to ongoing severe muscle spasms that took me a month to figure out how to control.
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Thanks lala. The reduction part of my lift/reduce will make me need the lollopop/anchor incision...which if I understand this correct is the donut plus a vertical line down to the IMF...it is the donut part that to me looks horrific. Plus, from other postings, while trying to save a natural breast, many have wound up with one that has been so deeply cut if it is a large reduction like I expect, that they lose all natural feeling in the remaining natural breast!
For my L-MX 1250cc was removed and we are putting in a 800 implant, so I am looking at a large reduction...
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Brit, congratulations on being NED!!
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Brit - Congratulations on being NED! Also a bit of sharing of my recently gained awareness. I too received a clear mammogram one year and a year later it showed an absurd amount of cancer in both breasts (7.4cm and 12.2 cm respectively). When talking to my BS about my yearly mammograms, I was told my tumors could be seen on prior images up to 5 years back, and that research shows 30-40% tumors are missed on the first reading, especially in dense breasts. She said the false negative rates should change with the use of 3D images but still it is very innocent and unintended human error that some of these tumors are not picked up sooner. My case was one of them. Damn dense breasts! I'm sharing this not to scare you but to say "trust your instincts" and if something feels "off" ask for a second opinion. Luckily, you did get just that with the ultrasound. Not everyone is as lucky - celebrate!🎉0
