For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Gracers I'm afraid you are not more than a few years older. I'm 52… with a birthday next month.
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DebDylan, how long have you been taking it? I take mine in the morning.
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Hi Lago,
Well then. Let's pick a date and face the firing squad together. You being MUCH younger --can pick the actual date and line up the squad. I don't happen to know anyone with those skills. Apparently being from Chicago you've got contacts that us in sissy California don't. There may be others that want to join us?
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Lago and Gracers I will join you. I am a little younger but not much. I will be 50 next month. Are we doing this in our 70's or 80's?
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I take my Anastrozole in the morning as recommended by my NP. Better for sleep issues… granted it's 12:39am right now and I'm up.
Teresa 70's is pretty young. I mean my dad is 81 and my mom is in her late 70's . They are not ready to kick.
Gracers gangbangers won't shoot at me. Currently if I were in the "hood" they would think I was there to make a drug purchase. They don't shoot customers. Don't think they shoot at old ladies either.
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I think that there are a lot more women out there that are doing well with this drug than we even know. It's encouraging!
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4 months in and basically no problems, anastrazole generic
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I was told before any tx 10 years. Think it has to do with the type if ca, maybe how great your risk for reoccurance. It's been around long enough to go generic, 10-15 years? There is always constant study of all drugs.
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My MO told me I'd be on Arimidex (Anastrozole) for 5 years. I believe the protocol for Arimidex is 5 years. The protocol for tamoxifen has recently changed to 10 years.
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DebDylan the reason is drug studies are expensive. Right now these drugs are generic so there is no big incentive for the original makers of the brand drug to do research. So IMO it's all about finding the money to do the research.
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Hi All!
I check in from time to time but don't post much. I have caught up with pages of posts and have a few comments…
Lago - thanks for the walking link. I will try it out this week. Being in Vancouver the weather is usually quite mild but it's raining buckets here these last few days and the youtube video is a drier option. And thanks for making me aware of the Shingles vaccine. I'll have to look into that further.
DebDylan - I have the burning tongue issue too but it started long before the AI. So I kept a food journal and have discovered that certain foods trigger it. It seems that I have developed a sensitivity to tree nuts SINCE CHEMO! Now I carry Clariton with me and take it when my tongue is buzzing or my joints are aching. I also developed a skin sensitivity to adhesive since chemo - tagaderm dressings and bandaid or tape adhesives are no-no's for me.
Martessa - I've been on Anastrozole for 4 months and about 3 weeks in I noticed that my hair was falling out. No bald spots just a LOT of thinning. But my hair was thick to begin with, having grown in fully since chemo, so losing a bit only made it more manageable. I was afraid that I'd lose it all, like what happened on chemo. So I tried BIOTIN shampoo/conditioner and supplements but didn't like the way my hair felt so I switched back to my regular shampoo/conditioner. I'm happy to say that for the last month or so the thinning has subsided to "normal" and still no bald spots. I hope yours is the same way...
Kathy044 - I'm on the Taro Anastrozole as well - didn't realize it was made in India. I get mine for free at the LGH Chemo Clinic and was not given a choice of generic or brand name. Other than a series of "adjustment" SEs - from tingling vagina, leaking bladder, hair thinning, bone pain/stiffness, insomnia, loss of appetite, tongue/sinus/ear tingling and I'm sure others that I am forgetting - it's been ok. Most of the SEs have gone or subsided and the Clairton does work for the bone pain and tongue issues ( I don't take it every day but only as needed).
As for the thickening mid section I kind of had that issue for most of my adult life - since having children at least - and haven't noticed any difference from TX except when I was on steroids during chemo. But I'm hoping that my 2nd fat grafting surgery on Feb 27 (with tummy tuck this time) will finally fix that!
I also take my Anastrozole in the morning along with my other supplements with my breakfast. I played around with timing when on Tamoxifen but so far this is working for me.
I had RADS for a bone met in July and MO wanted me to stop taking Tamoxifen and wait 2 weeks after RADS before starting AI. Again so there would be no confusion of SEs. No one could tell me if the mets developed during my time on Tamoxifen or if it was there all along. There is some suspicion that it might have been there from the time of my original dx in 2009.
I'm not sure how long I'll be on this AI for - my MO told me to try it until the SEs are too much or it stops working for me. I see him again in March for a follow up and I'll reassess then. He is more than willing to switch me to something else but it's up to me. He said that all the AI are all about the same but it's just finding the right one that's tolerable and works for each individual.
I know it's been tough and we are all stronger & richer for having had this experience. I am grateful to have met so many remarkable women on these boards, in TX and even in everyday life. I am also so much more aware of my body and my health - I could have done without the cancer but I'll focus on the positives for now…
Marie
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Right now the 'standard of care' is 5 years for Arimidex.
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Thanks Ruth! I suspected that might be the answer.
I have a friend who recently completed her 5 years on Tamoxifen. Initially she was so pleased but now I'm not sure she feels better off than those of us continuing treatment and counting the years we have left on our drugs.
She is not being monitored at all and feels like she has been abandoned…so far so good but she worries with every new ache and pain.
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I am checking in daily, but never post. I am taking Anastrozole too. I am having joint pain in my left knee that just about has me screaming. I don't want to take pain pills. I take acetaminophen every night and worry that I may be taking too much too often. I wonder if after 9 months, will this be the most pain, or will I keep getting more pain in other areas. At 60, I'm just not sure what is age normal and what could be side effects.
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KathyAnne, how long were you on Anastrozole before your joint pain started? Did you have joint pain before you started this drug?
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Reading through the post and saw several people talking about the shingles vaccine. My Oncologist and GP told me that Cancer patients should never take any live vaccine such as the shingle's vaccine. In fact, the Walgreen's nurse would not give it to me because of my Cancer diagnosis and my insurance does pay. Just wondering...
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Dwill, are you in active tx now?
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Don't get it during treatment....but once you are done, you can (and should)....I did, as did several other local friends who have had BC, all with the encouragement of our doctors.
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I did one in roughly that timeframe.
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I got the flu shot a few months after treatment...no problem.
also, I feel like some side effects go and a different one takes their place on this medication.. like at first I felt achy and tired but that went away and then different joints ached but that's not as bad, then I got a lot of leg and foot cramps and now but my neck and back ache ... I've been on this stuff for 6 months now.. does it seem to be like that for everyone?
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Deb, my MO had me get a flu shot while in chemo, last Oct. She said it might not be 100% effective, but did not want me going through flu season unprotected.
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KathyAnne - My MO told me to keep her informed about the pain. I too, experience pain in my knees and my feet are sometimes achy (I'm 58). She offered to order a bone scan if I was worried about the pain. I declined this time since she wasn't particularly worried. She believes it is a combination of SEs and arthritis. I'll revisit the scan idea next visit (April) if it gets worse.
I have found over the past 18 months that the pain comes and goes and sometimes changes location. My left knee hurt most when I started arimidex. Now the right knee is more troubled. I was told to take ibuprophen rather than acetaminophen since it is easier for the liver to process. While ibuprophen helps, it doesn't totally knock out the pain. I'm just trying to get through each day and closer to the 5 year mark. I was also encouraged to walk more and lose weight. That is my goal for 2014.
Hope you find something that works for you!
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Ask your MO about when to get the flu shot. She gave me mine at my 2nd chemo treatment (wanted all her patients to get one). Not so sure she would have given me one later on in treatment though.
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I got shingles vaccine but did check with my onco previously. No repeat of the dang shingles~~ I got shingles about 6 months after ending rads, no fun! I waited about another 6 months till the onco thought it fine to get
oh yes, I have always gotten flu shots and did again this year
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Got my flu shot a month after chemo and while doing rads - both my onc and my PCP wanted me to do this - worked just fine - get one every year now and haven't had flu - did get pneumonia two years ago and got shot for that afterwards - as for shingles - you don't want to get shingles - trust me - I lost a good friend (a doctor at that) - he was in agonizing pain for years after shingles and it wore him down - no painkiller worked in his case. I got the vac last year - had to wait six months because there was a waiting list - no insurance would pay but glad I got it - my doctors bugged me about it enough - check with your MO to find out when it's o.k.
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OK - to be devil's advocate here - in terms of is the flu vaccine safe? Some people, me included, think that no vaccine is "safe" - most vaccines contain harmful additives like mercury, aluminum and formaldehyde. do your research. These vaccines can cause guillain-barre syndrome - leading to paralysis which can be permanent, and have been implicated in the development of alzheimer's disease. I've never gotten the flu shot, and have never gotten the flu. Doing things to enhance your immune system, like taking vitamin D and vitamin C and eating healthy food and getting enough sleep go a long way to having a healthy immune system that can ward off pathogens. And, when they do strike, being healthy can make you get through them easily and give you a natural immunity.
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Flaviarose chemo and rads are carcinogens yet they use these to treat cancer. Sure there is risk but how common are those issues you list? The flu can kill you too. As we age our immune system is not as strong. I rarely get the flu but the last 2X (late 90's and 2007) were tough. I was a lot younger then. Got my first flu shot when my onc prescribed on. Get one every year now. I'm over 50.
When I do catch things its usually from my DH.
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Have gotten flu shot for years with no problems. Tried to get a shingles vacc about 2 weeks ago after reading comments here and my pcp wouldnt give it as he says not indicated for those under 60.
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My PCP wanted me to get the shingles vaccine because I got shingles after chemo. I didn't ask her she told me. I know my insurance probably won't pay so I'm waiting till I get a job. I do NOT want this again!
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lago - have you checked with your insurance company lately re shingles vac - some companies are starting to reimburse.
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