For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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DK, wow, you took Arimidex for 5 years! And you still got a new cancer? This is a problem for me when we are given these drugs. I don't know your diagnosis and history, but I've been questioning and struggling with many of the drug therapies and data.
I cheat and only take 1/2 pill every night. My MO said I didn't have to anything if I didn't like taking the med so I thought I'd work it into my system first. I have a physician in my family who says all medications are usually sold at a higher level than needed. He didn't suggest I do it this way nor did I inform him but I'm very sensitive to meds. I do find myself having mood fluctuations even though I take Cymbalta. Some days just feel blue and sensitive. I take Trazodone also and have insomnia so bad. It's gotten worse. My PS refilled my Gabapentin and it helps to take it at night. So, I take the Trazodone, a Gabapentin, and an Advil PM. I tried a Lunesta a few nights ago and it didn't do anything.
I am so sorry for your second diagnosis but it sounds like it's behind you. I am having an outpatient procedure this week, 2nd one, where I'm injected with cortisteroid in the inflamed nerves between the discs. I understand as you age arthritis sets in and all we do on computers, etc. contribute to neck pain. Since this is not a procedure to treat a symptom but an attempt to medicate the nerves, I can't help but wonder if it will make it better while taking Arimidex. It's hard to tell what is aging and what is a SE.
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Daylekbraca2 give it 3-6 months to see if it gets better. Sometimes it takes a while for your body to get used to it. If it's that bad try Generic Aromasin. I've been on it for over a month after 3 years of Anastrozole. I no longer have back, neck or shoulder pain and the depression is gone… and I mean gone! Not sure if my eyelashes are thinning again but they did grow back the 5 weeks I was of Anastrozole (before I started the Generic Aromasin)
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I'm up to six weeks on arimidex. My hips really ache, and odds and end other places. It started out that way with tamoxifen also and that finally went away. I'm hoping this will too.
For some reason, I am sleeping much more normally. On Tamoxifen, I spent three years not sleeping well. I stockpiled my ambien, and if I went 3 days sleeping badly, I took 5 mg. usually took it twice a week. I haven't taken any in a couple weeks. And I like a fifteen minute nap in the afternoon when possible.
We went on a long bike ride on Saturday, about 15 miles. (Well, 8 miles to brunch, and then about 8 miles back, lol) Started out great, nice and cool. Riding back after brunch,we were in the sun. I got hot and just felt like I couldn't cool down. Stopped in the shade and I actually laid down in the grass until I felt better. What I noticed most of all though is my hips were really achy. I will add that it was our first time out this summer, so not like I prepared, but I bike at the gym and walk a couple miles on the treadmill.
Hot flashes are still bad. I think I am having fewer drenching ones, but more hot ones. And, I can tell right before one starts, which makes me kind of panicky. I found silky fans at the dollar store. Bought 20. They work better than the battery ones, cover a bigger distance. My hand gets tired fanning myself, but I figure I'm getting a hand workout, lol.
I had a little dizziness at the start, but that seems to have stopped. I have had heartburn, really severe a couple times.
I have the generic version, but for my next dose, I'm going to get a script for the actual stuff.
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Oh forgot to mention no more sleep issues since I switch to Exemestane (generic Aromasin)
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DK, I agree with Aurora! I have been on antidepressants for many years. Sometimes I have needed to make a switch because my system has gotten used to a drug and needs a little shake up. Not only have you been on the antidepressant for a while but you are facing a new diagnosis and all the added anxiety that brings. This really might be the time to talk with a therapist for a while, switch meds and give yourself a little extra TLC and attention. You might also think about a little pain med to go along with your sleep aid. If your pain is keeping you from sleeping well than you're fighting an uphill battle. I will be thinking about you!
Virginia
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Mema4, it is hard to balance what we understand about drug therapies and the data. Sometimes the numbers just don't seem to add up, do they? I think the best way to make sense of any of it is to arm ourselves with as much information as we can. We are in a good place for that so do keep reading and asking questions!
One thing to remember is that none of these drugs "cure" breast cancer. They all work to help prevent BCA and to help keep it from returning or progressing. It is frightening to know this, but it's important to help decide what you should take, with what else, for how long etc. It is possible that the meds DK was taking kept her BCA under control for five years. Some studies are even recommending AIs be taken for ten years after a bout with BCA!
Even though you didn't ask, Mema4, I want to caution you against adjusting your dosages or changing meds without talking with you MO! You might even get a second opinion if you haven't already. I think it is really important that you and your MO give each other ALL of the relevant information so that you can be on the best regime. I don't know, but it might be possible that changing the dose might actually increase your risk. As I said, I don't know that for sure, but I would hate it if you were risking SE or worse by making an ill-advised decision. The science isn't exact and that is scary, but it's the best information we have. Remember, too, that your MO works for you. He can't tell you what to take but can help you make good decisions. I think that "sneaking" makes that process difficult. Imagine if you had a problem and your MO had to try to help but didn't really know what you were taking?!
Take care! Virginia
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Hi
I have the BRACA gene and the cancer occured in the other breast afyter I stopped the Arimidex. Still clean on the roiginal one. Fear Not DK
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Hi
I was put back on arimidex because it worked the first time. No sign of my original cancer after 9 years. I have the BRACA gene and the new cancer was in the other breast. Fear not. DK
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Mema, I agree with Vadre. Your onc needs to know you are taking 1/2 pill, and I very strongly suggest you have a chat with him about your hesitation to dive right into the full dosage. I think one of their most difficult challenges is working with us about our treatments, many of which seem counterintuitive. Who wants surgery, rads, chemo, other stuff anyway? Lots of us have spent our whole lives avoiding drugs, radiation, toxins, even healthy diets and exercise, and suddenly, it all has to change. We're no longer keeping our bodies well, pure and natural. Instead, we're addressing a very nasty risk, and have to address that risk. It's not pleasant to pay for home, auto, life, disability, liability, medical coverages, but we do it as risk management, and we are happy to be able to do so, even though we'd like to have those $$$ for another purpose. Like you, I began arimidex with 1/2 dose. After about three days, I tried whole pill, half pill, whole pill, half pill. Within about a week, I was on the full dose. Why full dose when 1/2 better matched my pre-BC whole body healthy objectives? The research on arimidex is on the whole pill. The whole pill cuts my risk of recurrence by about half, and maybe it does for you as well? There are many drugs where a range of dosages is available; this just is not one of them. Might I still have a recurrence? Certainly, but, again, my risk has been reduced by 50%.0 -
The new studies indicate (for Tamoxifen) that taking it for 5 years is good protection for the 5 years taking it and also for the 5 years post but it doesn't work for everyone. They are doing studies just like this for the AIs. According to my onc it looks like they are getting similar results but the final results aren't out yet.
What the drugs essentially do is "starve" the cancer by not allowing the fuel/food to be available. If a cancer forms and there is no food it may die off. Granted non of these drugs can remove 100% of your estrogen. Also as we know if you are post menopausal the more fat on your body the more estrogen your body can have so ideally you need to get to a healthy weight.
These results are for all hormone positive cancers not just BRCA. Ironically more young women who have BRCA hormone have triple negative cancers.
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Thank you for the elaboration, Iago. My understanding was that many MOs were encouraging longer but I'm sure this varies. Especially because, as I am reminded over & over, no two BCA are the same! Because I'm IV I am not as current on these studies as in others more relevant to me.
While I know in my head that I want every single bit of estrogen gone from my body sometimes I feel so dried up 😖 that I want to bathe in a pool of the stuff!
Virginia
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Vadre my onc is telling me I'm high risk for recurrence due to size, grade etc and if thecompleted studies say 10 years she will say the same for me for sure. Already hinting that she is going to recommend it
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Many thanks ladies! All of you are right, and Lagos has heard my story a lot over the last month or two. This last week as I was organizing my little pill keeper, I did the whole pill one night, half one night and so on. Ended up going back and switching that whole pill out! I saw my BS last week for my check up and he said even with my low Oncotype, they will be suggesting ten yrs now instead of 5. I had been reading about that so when I see my MO next month that will be another point of discussion. And I will come clean with my cheating. I'm going to get that appointment moved up to this month.
It is about not wanting to deal with all this crap anymore. I don't want to feel bad every day. When I do get to see my 4 wonderful grandchildren I don't to be sickly. I've always been the fun grandmother and they are already gentle with me which I hate! So, much of this is about my need to be normal again when I should be thankful there is something available that might keep me alive longer. Do you ever think that no matter what you do, it is still there? It's like luck of the draw, some do and some don't; and it's regardless of their weight, meds, lifestyle and whatever. Ironic that on the Stage IV threads, no one seems to regret what they have endured right up until the time nothing is left to do. I never read where they say they lived a healthy lifestyle and still got cancer. Makes me feel so bad that I whine so much. And, makes me scared that by not taking something I could jump to a different stage and location. And it makes me mad when I see that some get cancer somewhere else, even when they are doing everything they can to not have that happen. It makes me feel like giving up, until I come here and read about all of you.
I'm rambling but I think I need therapy! But all of you are right, it would be helpful to sit with my MO and talk. He seems pretty nonchalant about this so I think I got the idea that it doesn't matter. I need to know for sure. When I do post on here, it's because I need to hear what you are saying. It gives me courage.
And Virginia, I'd love to bathe in oil. And I'm thinking I need to lipo this fat off my waist to help keep those cells from planting themselves there!
You ladies help so much. You never know who is lurking out there, just watching and reading but not commenting. I think people on BCO forget that. Some people on BCO end up having such close relationships. But some of us are adding this site to others, trying to get real life experiences. For me, the experiences are what's critical and I can use those in my doctor/patient discussions. Used one yesterday! Loved my PS expression when I told him something! And, he agreed. So, thank you from a "floater." (Big Brother term!) I don't know all of you, but your words help more than you know.
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Mema, we all whine that we lived a healthy lifestyle and still got cancer. The only difference with the stage IV ladies' postings is that they have mostly moved out of the frying pan of dx and into the fire of ongoing treatment and testing. For me, I've cooked from scratch for many years, nursed two children, and was born into a family where only one aunt well into her 80's (10 women and four men in my parent's families) had breast cancer. The problem, I think, is that all those mass market publications about reducing risk cause us to confuse healthy living/eating/lifestyling with a cancer silver bullet, rather than risk reduction for cancer/heart disease/diabetes/etc. If you read the alternative and complementary threads here, every day someone is posting about another food or herb with cancer fighting properties. I am happy to agree that these foods/nutrients have the properties they claim, it's just that none of them have been proven to cure anyone. We know this is true, because if they worked, we'd all know about it, wouldn't we? Publications need to publish, subscribers need a reason for renewing their subscriptions, and we all want eternal health and youth. I dont regret any of the healthy things I've read about, and put into practice, or those I've ignored. I hope my healthy choices delayed my breast cancer, and will help keep it at bay in the future.Sorry about the rant, everyone. I'm still in the process of coming to terms with the difference between scientific research (need for vitamins, calories, for instance) and anecdotal (not scientifically proven) research and information.
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mema4 you're welcome to BCO anytime. I'm a "floater" sometimes "poster" myself and it does help and takes the place of therapy sometimes so i say keep rambling away any time you need to. And also, I would like to encourage you and congratulate you in coming "clean" about your "cheatin". As far as enjoying your grandchildren and being the "fun" grandma I think even 1/2 a pill of arimidex (i'm on it as well) is still carries enough side effects so it doesn't matter and one full pill has the potential of taking you to NED (no evidence of disease) I've been taking it for a year and have been with NED since December last year. So we can only hope you will get great results as well. Sending you (((hugs))) and well wishes.
Aurora
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Brookside a big BRAVO for your post. I have actually lost a friend who posted this on facebook from an alternative (not complimentary). First I posted a link from snopes saying that John Hopkins doesn't say this. Then I explain that this site is supporting eating well to cure cancer (links on the left had stories like this and ones that "ate their way out of AIDS" too). She got mad at me and said "but it's a good diet so its good advice. I had already acknowledged that and stated she needed to find a better source. I don't post "Be good to your neighbors" if it is on a white supremacist site. While the advice may be good the racist site isn't.
They really don't know what causes cancer. They see some risk factors that you can reduce but until the know for sure then prevention and cure are just a maybe for early stage and a rush for time for metastatic sisters and brothers.
While my onc considers me high risk for recurrence I let her worry about that. That's what I pay her for. I do the best I can reduce my risk but I do need to live too. No one can be perfect. Odds are still on my side to be NED the next 6 years (already passed 4).
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Well said Lago!
We've all been put on a drug to prevent recurrence. Yes, the SEs are nasty and at times very difficult to live with, but do we really want to have to go through surgery, chemo and radiation again? I'll put up the aches & pains, hot flashes and mood swings for 5-10 years if it means I can remain cancer free!
For me this particular board is meant for griping as well as for encouragement and information. We all need to vent and we're all here to listen and empathize.
Rant on Ladies!
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Lago loved your post, you summed it up perfectly. I used to belong to a Golden Retriever forum. I still have many friends from that forum, but only on FB now. On a Golden forum clearly we are all there for the love of this magnificent breed. Talk about people getting nasty though. Food fights! Everyone defends their food as the best of course, and so many believe everyone should be feeding this particular brand. They flame people who feed brands like Pedigree, as if you don't love your dog as much as they do. It really bothers me because so many of us have dogs that we rescued. Both of mine are rescues. I would rather see someone adopt a dog of ANY breed and feed it Ole Roy if it took that dog out of a kill shelter, then gave it a loving home. I stayed far away from those threads but really couldn't believe how vile some people got!I am dealing with really bad hip pain. I have been on generic Arimidex for 2.5 years, so I am halfway there. During that time however I have taken several breaks from the drug. The joint pain just becomes so bad. My best pal is my heating pad, I could not live without it. My neck and my left hip are awful. I took two months off, all of November and December. My hip is probably the worst it has ever been, so it may be time for another break. I am leaving Friday for a birthday party for ME.......in Wyoming. I turn the big 60 next week and all I wanted was to go back home and have my friends and family come to celebrate with me. I am so excited, I will actually stay in Colorado for five days with my youngest son and his wife. We are bringing our dogs, and they have two Golden Retriever's, so it will be a crowd there. They live high in the mountains west of Denver, it is so beautiful up there. I am hoping I can walk all four dogs alone....son and DIL are both geologists and work so I will be at the house by myself during the day. My DH is heading south near Colorado Springs to stay with his son and family. Then we will go to Cheyenne together, our friend Marcia is hosting my little bash, just a few friends and family. We are just having a simple BBQ. My oldest son will fly in from N. Dakota. My sister and niece and brand new great nephew are coming. I am so excited to have this to look forward to. I just hope my hip keeps functioning! I refuse to let the pain slow me down.
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Janis, sounds like you have a great party upcoming! enjoy it! If you have the chance to use a pool, sure does help when my joints start to scream!
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justmejanis Please ask your onc about switching to Generic Aromasin if you can afford it. I can't believe the pain I was in on Anastrozole. I just assumed it was something else till I took my 5 week vacation as 3 years. No more back, neck or shoulder pain on Generic Aromasin. It's truly amazing. Don't suffer.
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Janis, ditto what Lago said. I just switched AI's. It's only been four days, but the four-week AI holiday I just finished made all the diff. Maybe talk with your onc about a drug holiday until after the BIRTHDAY? Then maybe switch? My onc says pain with the new drug tends to be mucho less.
Lago, thank you so much for your post. It's so tough. Research shows what statistically reduces our risk. So far, statistical risk reduction is all this research can do, yet so many people are out there trying to cure themselves naturally. I don't know if you've followed Christina Newman's cancer journey on youtube? Early on she posted why she would not do chemo (poison, basically, if I remember). Now she's Stage IV, on chemo, and posting about how, when her body was its most cleansed and healthy, her tumor continued to grow. Only chemo has shrunk her tumor. Sometimes our lifelong expectations get in the way of our health.
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Thanks. Sounds great. Keep me posted DK
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brookside I wish more women who are considering alternative would see her video. Granted chemo is no guarantee but at least we know it helps more than it doesn't.
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Janis - I echo what Lago says about changing your AI and going on a four week vacay from Arimidex first - you won't believe how good you'll feel. BTW ask your PCP if you can get a steroid "shot" in your hip - I had one and the difference was awesome - I was able to walk upright for the first time in five years and no pain! Many years ago we had a wonderful golden who was "a big red" he weighed over 100 lbs. and he was just wonderful - we had two black labs at the same time - of course I was younger then - now I'd just like to have another small dog (my beloved "Munchkin" passed in March). Happy 60th - hope you feel better soon.
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Thanks to all for the great advice. I will call my MO when I get back and talk to him about switching. Lago I am really impressed that you switched and are doing so much better on the generic Aromasin. I assume you only take it for the duration of treatment which in my case is 2.5 years. I am so tempted to go off the Anastrazole now hoping it will help the hip pain. My son lives in the mountains and last time I was there I loved walking the dogs, but lots of hills on those dirt roads.
Brookside I am also impressed how much better you are feeling already. This is so encouraging!
Proudtospin, I wish I had access to a pool but no such luck. I know I would love it. I haven't been in a pool in years, but I have always loved swimming.
Sandy, I am so sorry for the loss of your little Munchkin. What kind of dog was she? I am so in love with my boyz and love this breed. Sadly they have a high incidence of cancer and nobody really knows why. I lost my first Golden to a very aggressive cancer. He had just turned five when we had to make the sad final call to the vet. The loss was so profound. Last year my son lost one of his to cancer also. He and his wife have no children, their dogs are their kids. Both of mine are now near ten and I worry so much. I have to force myself to push that fear away and enjoy every minute I am honored to have them in my life.
Thank you ladies, I read all the time but don't post often. When I do post I am always impressed with the caring and informative replies. I notice that when anyone posts. You are really a great group.
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justmejanis my onc is waiting for the studies to come out but she is hinting for a total of 10 years (7 more). I am high risk due to larger tumor (over 5cm) grade 3, luminal B. You have a smaller tumor and luminal A so your onc might not push it. But the final 10 year studies on AI are not complete yet… but are indicating the recommendation will be 10 years. Again it might only be 10 years for high risk like me.
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Yes it is discouraging to hear of a second breast cancer after taking the medication for five years. I have often thought it curious that five years is a cut off date for success. After that it's "just another cancer." REALLY!! I'm early in this journey, but I can see there is never really a "home safe" time anymore.
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all this talk about switching to a different AI makes me realize I really need to call my MO and try something new. I started out badly on this generic, took a break, switched to the brand name, did ok for a bit, had to go down to 1/2 dose for a couple months with my MO's blessing, back up to the whole pill, but now the exhaustion and depression are back along with severe hip and shoulder pain. I went to my PCP and had PT for hip and even had an X-ray. Nothing abnormal and PT didn't help. Then my neck and shoulder started hurting too. I can't imagine 4 more years living like this so I think it's time to try a different AI. Thank you ladies for your encouragement.
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OMG Bren you sound like me. I never even thought my back, shoulder, neck pain was from the AI till I took my vacation from Anastrozole. It was 90% better in 2 days! Also took me 3 years to suspect the depression was from the Anastrozole. So far life is so much better Generic Aromosin. My only issue is the price.
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Bren it sounds like a change might be in order for you as well. My hip and neck pain are terrible. I can't imagine not having it, but will be thrilled if a change helps. Lago, how much more is the generic Aromasin? I am not sure if my insurance would allow it, but if it is what the MO prescribes I hope they don't deny it.
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