For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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pboi, you do have a lot on your plate and and every right to feel nervous. How old are your kids?
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PatRN10 that's good to know since I am only 30% ER and 5% PR. On Exemestane now. Been 4+ years total on ESD. My oncologist is more than hinting at an additional 5 years. I am now on 2 other meds for SE of this drug including Prolia and another that gives me Tinnitus. This is why I'm not so sure about 5 additional years.
But 30% of a 5.5CM tumor is a bit different than 30% of a 1CM tumor
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MarianeElizabeth, I think you have misunderstood my message. I have never downplayed the SEs the women here are suffering from. HOWEVER, I think it is not right to go into taking anastrozole expecting SEs. Know what they are and be alert, but don't dread taking the AI. You likely won't have problems. If you do, come here and hopefully find the answers you need. My message doesn't deny SEs or looking for answers to them.
Being positive doesn't deny the reality of depression. Being positive won't cure depression. But if you can be positive you will feel better. If you are depressed please do get help (isn't that doing something positive?).
I wish I had known that the fatigue I've had for this past year was quite normal too. I thought it was all from coping with my husband and the exhaustion from it. I felt a huge load lifted from me knowing that it was common. For me knowing that was hugely helpful. Just like you found that depression could be an SE of anastrozole. Isn't it lovely that antidepressants help with hot flashes and so many other things? Definitely wonder drugs.
I'm sorry if I wasn't clear in what I have been saying.
HUGS!
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PBOI, like you needed something else! I can understand why you are nervous. Concentrate on eradicating that thyroid cancer! My brother-in-law had it several years ago (maybe 10?), had surgery and radiation and has done very well. That is hard having to be away from the kids for that week. But it will be worthwhile. Glad that it was caught!
You are just overloaded with far too much to cope with. I'm sure it is hard to see that proverbial light at the end of the tunnel. Keep searching for it. It IS there! We'll help you find it. In your pocket for the next 2 weeks (feel me wiggling around?). Good luck with all your treatments!
HUGS!!!
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Thank you MarianElizabeth - that's the message I've been trying to send for four years now - honestly people we post here because we have SEs - that's how this thread started - those of us with se's were looking for help not for lectures on being positive (btw studies show that positivity doesn't do "squat" ) - yes, it certainly would have been nice for me all those years ago to find out that depression was one of the se's - PCP finally acknowledged it when I became suicidal and that's NOT ME!!!
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To me, it makes sense that the higher the ER %, the more you would respond to an AI. That doesn't mean that people who are only 5-10% wouldn't respond or don't need to take it. I just think the higher the number, the more beneficial it is. I'm ER/PR 90%. That means my BC is strongly driven by the hormones in my body. I feel that I need to do everything I can to reduce my estrogen. Which really makes me sad some days
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Marianelizabeth ... I have 10 year old twins and a 6 year old.
Thanks Peggy!
PB
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You're welcome, PB. I'm in awe of you ladies with children at home, coping with cancer and its treatments. I don't know how you manage. I found it hard enough with a disabled hubby. But at least he understood what was going on and I didn't have to run him to all the things kids are into.
HUGS!!
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lago, I agree. Every situation is different. Tumor size is a big factor.I really do think I will have some benefit so plan to give it my all.
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Sending positive vibes to you, PatRN10!
HUGS!
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So - as I have written in here before - I started having dull headaches about the middle of May. They are daily and not debilitating but none the less bothersome. I went away for the 4th of July weekend and forgot my arimidex and the headaches were gone for three days. Back the day after I started back up on the pill. So I decided it was a SE. Saw my MO for my 3 month appt today and he wants me to stop taking arimidex to see if they go away - wants me to give it two to three weeks to make sure. If I still have headaches - even if they are different - I will have to have a brain scan. If they go away, he will try a different AI - most likely femara. He thinks SE also - but wants to make sure since HER2 likes to go to the brain
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Linda505, oh joy...NOT! Constant headaches, even when not horrible, still wear you out. I assume nothing makes them go away (like Tylenol). You certainly discovered the cause by accident. I'm glad that your MO is listening to you and is willing to work to find an alternative for you. Hope Femara, if that's his choice, works much better for you.
I don't know anything about HER2 - do you take Herceptin forever or just for a year or what? Sure don't want anything to go to the brain. Let's cross fingers and toes and hope the next AI you try works fantastically without any SEs!!! Good luck!
HUGS!!!
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Hi Peggy - I took Herceptin for a year - once every 3 weeks. Had my last one April 21st - headaches started middle of May. HER2+ is very aggressive and is sneaky in that it can skip the nodes and go straight to the brain and other places and does so too often. I sure hope I discovered the cause as I would rather it be a SE of arimidex than brain mets.
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Thanks for sharing that with me, Linda. SEs of Arimidex definitely preferable. I thought HER2+ was agressive but didn't realize in what ways. You went quite some time before the headaches hit. Again, positive thoughts are with you.
HUGS!
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thanks - my MO says that people that get SE's from arimidex often have them come and go and change over the course. I have always been sensitive to drugs - even over the counter stuff so I wasn't surprised when I had SE's. I don't mind the achy joints - again rather that then BC, but the headaches bother me enough to want to try something else.
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Linda, I'm with you on the headaches and wanting to stay on AIs. Luckily, so far, no SEs for me. But headaches are hard to cope with - at least for me. The achy joints I had long before anastrozole - I'm 70 and bound to have them. Nice to know that SEs can come and go. I'd say you've given the headaches more than ample time to go away.
HUGS!
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I got my prescription today. After reading all the side effects Leary about taking it. My score was 11 well under 18. She told me it would kill any floating cancer cells if I had them left after my massectomythat I chose to remove a tumor. I just can't see being sick for the next five years, especially when there is a maybe I have cells left. I am very Leary about doctors prescribing meds maybe to just have patients and make more money off of insurances. Sorry had to vent.
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pho I, with 3 young kids even more on your plate~~hoping you have some family/friends support and that the week goes by fast.
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PBOI, will you be at the hospital for your thyroid treatment? Or stay at a hotel? Can you be around people other than children? Or are you isolated? If so, cram your favorite e-reader with a ton of books (a couple Diana Gabaldon Outlander or George RR Martin Game of Thrones ought to do it!).
HUGS!!
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208Sandy, yes this thread is meant for discussion on experiences, S/E and discussion as the originator says above. Let's keep that In mind as we support each with those goals in mind. We ARE all taking the drug for the same reason but do need to exchange ideas and concerns, not just say not to worry about possible S/E.
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MarianElizabeth, I am just saying don't anticipate SEs and that's what my MO told me. Don't be afraid to take AIs! Try them. Most of the women, even with bad SEs, say try them. If you get them, this is the place to be. If you don't, come here and remind those just starting out that SEs are not a given. Please don't belittle my efforts to present a balance about AIs. We certainly don't want to frighten off women from taking AIs which can be lifesavers.
The thrust of this thread is not only for SEs but for "experiences." My experience has been good. Others have had good experiences, too. And some have had bad ones. Keep in mind that you are not only reaching women who have been on AIs for a period of time but those who are just starting out. Would you have wanted someone telling you how awful they were before you took a pill and that you shouldn't take them because of SEs? Weren't you glad there was something that could help keep the breast cancer from coming back? I certainly am and I would guess you are too.
I'm not telling anyone to not post their SEs - this forum is too vital to do that and I wouldn't anyway. I'm just saying that newbies should be getting a more balanced approach. Let them get some experience and if they have no issues, tell us; if they have issues, tell us and we'll help. We're all after the same thing: KILL CANCER and KEEP IT KILLED!
HUGS to you!!
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Hi Linda. I see you are in Venice. Quack!!! I'm in Dunedin, this rain can GO AWAY!!!!!
I just started the dull headaches recently. I blamed it on this rain. Fibro. A fall I had in Nov when I broke my wrist. Thought it messed up my fusions. Was seriously considering seeing a pain doc for trigger point injections.
Never gave the devil pill a thought!! I can't deal with this. The aches and wall walking, ok. Not this. Will see MO in a week. Plan to discuss.
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For those suffering from AI-induced achy joints etc, some of my friends have found help with Cymbalta. It is worth exploring and the University of Michigan is doing a double (or triple) blind study involving Cymbalta. Just a thought.
HUGS!!!
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SpookiesMom, I hope your headaches are weather induced - that would be the best outcome. You certainly have had the weather to cause them. Definitely talk to the MO. Hope you can find relief.
HUGS!!!
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Spookiesmom - I am currently building my ark - will pick you up when it is done! I am so over this rain ughh. At first I thought I had the start of a sinus infection or a cold. Then it didn't progress and I didn't have any other sinus symptoms. They are dull - not painful but tiring and there. They feel more like a sinus headache then anything else. I thought that I had developed allergies so I tried different kind of allergy meds to no avail. I was getting ready to call my doc when I saw that headaches could be a side effect from arimidex site
- In the early breast cancer clinical trial, the most common side effects seen with ARIMIDEX include hot flashes, joint symptoms (including arthritis and arthralgia), weakness, mood changes, pain, back pain, sore throat, nausea and vomiting, rash, depression, high blood pressure, osteoporosis, fractures, swelling of arms/legs, insomnia, and headache
It is the last one in the list but it is in the "most common" category. I will let you know what happens as I will not be taking it starting today.0 -
Thanks Peg. Unfortunately, I can't do the SSRIs. I've tried them ALL, way back to Vioxx. Feels like an elephant is sitting on my chest, can't breathe. Wish I could!
I used to get the trigger point injections, at first it was lidocaine, then we went to Botox. Yes. And it really helped. And some of this headache stuff seems to be coming from the scapular area.
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Spookie, that wasn't a good feeling. I wasn't sending that post to you in particular, just everyone in general. But a bummer that you can't take them. Hope you find an answer AND a solution!
HUGS!!
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spookie - for you and me LOL
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Marianelizabeth and Peggy - thank you so much for your support. I've decided to think positively, that I will not go into taking this pill waiting for side effects to happen, for nothing has happened yet. But if they do, I will deal with it then.
I'm lucky to have my parents and family help with the kids. My parents are actually moving into my home Friday, and I will go alone to my parents house for a week.This way I can protect my kids. I will miss them like crazy, but am thankful FaceTime exists so I can still "see" them.
Thanks again for your support, it's really helping me try to get through this week.
PB
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I'm glad, PB. If SEs do develop, we're here to help you. If they don't, pass that along to others so they won't be scared.
Glad you get to be in a familiar home while you are isolated. Wonderful that your parents can help out.
HUGS!!!
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