For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Yesterday I had my DEXA Scan, blood work and check in with my Oncologist nurse. I told her that SEs hadn't changed much #1 is HOT flashes, #2 is muscle aches. I'm taking my dose every other day, and with that I think I can handle it.
She said, "So, you don't seem to tolerate medication well. Can you do this for 7 years?"
"What the what? Seven years? I am heard 5 discussed, and about some people doing up to 10. This is the first time anyone suggested 7 years for me personally."
So I guess that's what is expected. It just sounded terrible at the moment, so I said that all I could promise was to keep going unless something changes.
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Im noticing a lot of ladies on here taking supplements, I'm not taking anything and as of current I haven't been told to? I go for my three month check up in about 2 months, is it because I'm still so new to taking anastrozole and lupron shots?
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MexicoHeather, 7 years? Seems like the MOs go for 5 or 10. Mine says with my dx that 5 is plenty. I doubt he'll change his mind when I see him next month. I should be done then in October. Hard to believe it has been nearly 5 years. My mammogram was good that I had done last week.
Good luck with your SEs!
HUGS!
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ToyaMjj, I take vitamin d3, 1000 units 3 times a day and folic acid (because I intend to drink my nightly glass of wine). I also take REGULAR Claritin to help with the stiffness I have (and had before BC). But that's it (aside from Benadryl and Pepcid and Fosamax). I'm just not into supplements. I know many ladies here are.
HUGS!
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Hi everyone, This article from this site will explain the 7 years verses 10:
https://www.breastcancer.org/research-news/5-more-years-of-ais-no-better-than-2-more
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Toyamjj - my onco put me on calcium, and vitamin d3 when I started aromatase inhibitor to help counteract the bone thinning effects of the aromatase inhibitor. You might ask your onc. about it.
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Mexico--I was told five years (for now) but a good friend who was diagnosed last summer at the other hospital in town was told seven. I know there is emerging research about the benefit of extending the AI for several years, although I recently had a follow-up with my RO and she said the longer time period is more often recommended for younger women with more aggressive cancers. I figure we'll see what the research says when I hit the five-year mark (I'm only about five months in) but wouldn't be surprised if it's recommended that I stay on it a few more years.
Re: supplements, I've never been a big fan, but did start taking some D this past fall and more recently added in some calcium, although am trying to increase that through diet too. PontiacPeggy--what's the correlation between folic acid and wine/alcohol?
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PontiaccPegg,
Can you explain what you're taking so you can still enjoy a nightly glass of wine daily? How does that help? I've given up drinking during the week and now only drink now during the weekend. I would love to be able to enjoy a glass with dinner like I use too?
Thanks
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Ingerp and Toyamjj, I take folic acid because Dr Susan Love (The Breast Book - the BIBLE of breast cancer) said that it might help. Now, I have no idea if that is true but I thought it couldn't hurt. Many of my friends from BCO still drink (none to excess). My feeling is all things in moderation. I did not make any huge changes in my life because of BC. Not sure I even made any small ones. I usually have one glass of wine with dinner. I might consider two glasses but that is too many for me and I don't like feeling loopy - low alcohol tolerance apparently. Each of us has to decide what is best for our own bodies. I happen to think that alcohol did not play a role in my BC. Nor any food. If changing your diet, eliminating alcohol or other changes help you - go for it. Perhaps it makes a difference that I'm 73. I don't know. I'm also not overweight.
So many unknowns!
HUGS!
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Peggy it did occur to me that I think <most?> bread in this country has folic acid in it and I no longer eat bread <much!>. Now I'm wondering how much I'm getting in my diet. Certainly something to think about. . .
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My oncologist said 10 years for the AI - I was on Tamoxifen for 3.5 and now Arimidex (anastrozole) for 1 year and 1/2 so far...Peggy, I remember you from 5 years back which was my active surgery/chemo/rads period. Glad you are doing well! For supplements I am taking the Costco combo 600mg Calcium with D3, I take 2 a day. (1200 mg calcium and 800 IU of D3).
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Ingerp, I honestly don't know if folic acid matters or not. However, I figure it can't hurt.
Bow1965, we do go back a long ways! Sounds like you are doing well. Very glad to hear it!! Neither of my MOs ever said 10 years for me. My one here in Spokane sees no need. I absolutely trust him. Unlike my MO in Pontiac, he has never treated any of my off-the-wall questions as being crazy. He really listens (amazing, isn't it?). I will miss him - he's kicking me loose in June or maybe December.
HUGS!
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Seems like I’m taking the most supplements. I take 2 calcitrate with D, each tab has 600 mg calcium and 800 IU of D because I have osteoporosis. I also take turmeric/curcumin with ginger, 600 mg for inflammation associated with arthritis, and also vit b6 and alpha lipoid acid tabs to help with neuropathy I got from the taxotere. I take melatonin to help sleep due to the astrozole. I do wonder sometimes if it is to many.
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MACTAZ - vitamin C, D, a multi vitamin, 2 fish oil, 2 Citracal - calcium +D, an apple cider vinegar capsule and I'm adding magnesium. We've been on the road and I just haven't included it yet. Does it help me? Damned if I know.
The extra D was added by my MO. But the first 5 listed above I've taken for about 20 years. Still got BC but otherwise I'm very healthy. I believe it's a crap shoot.
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CindyNY, I'm with you. We lost the lottery. Definitely a crapshoot.
HUGS!
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I took (and still take) magnesium, turmeric, ginger, fish oil, 5000IU Vit D and a multi along with a good probiotic and olive leaf extract. The magnesium, turmeric and ginger were to counteract the Tamoxifen muscle pain and I continue them because the magnesium keeps me regular and my PCP says turmeric is the new wonder supplement for heart health. My BS put me on the higher dose of D because he swears it's why so many of us get cancer now. ( I have an outside job and my D levels were very low at diagnosis.....he says it's because we use so much sunscreen.) The fish oil also helps with heart health. The probiotic keeps my gut healthy and since I started the olive leaf extract 4 years ago I haven't had a single cold! And that's after I used to get 2-3 every winter! Other than the turmeric and Vit D, I don't think I'd ever stop the OLE.
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Hey ladies, I've got two issues I'm looking for some insight on.
Is anyone having bleeding gums with no oral health problems? Just had my 6 month cleaning and mentioned after brushing w electric toothbrush, when I spit and rinse, I see blood. No inflammation, floss 2x a day, brush 2x a day. She gave me a new toothpaste to try, Parodontax. She'll recheck me in August if its not gone. I may end up at a periodontist.
Next is spotting after intercourse or even a random pink tinge on wiping. Today was also my yearly OB/GYN internal. She did a pap, took 2 cultures, and scheduled an internal ultrasound. No pain when she presses on my cervix but blood on her glove from it.
I'm back from snow birding in FL, and all my appointments hit near each other. Feels like I'm on a roll, not necessarily a good roll.
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CindyNY I've never had the gum issue.
I did have spotting about 3 years ago. Mine was caused by a cervical polyp, which was 'friable,' and would easily bleed as you describe your spotting. After ruling out all other possibilities, it was determined that this was definitely the cause of my spotting, and my OBGYN removed the polyp with a small surgery. Might be worth asking whether there's any chance of something like that being the cause of spotting.
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You're doing the right things. The only thing you can add is xyletol mints. Therabreath is a brand name. They will add moisture to your mouth without sugar and dentists recommend it. Don't overbrush, gently massage your gums. (Three dentists in the family). Yes, it's about hormones.
On the Vag area., that is normal, it's called vaginal thinning. The walls lack estrogen and become more fragile. I don't have apps, because I took everything out. My gynecologist is so helpful.
I'm from Florida. You left just as it got hot, hmmm, I wonder why.🏰🛀🛀 We went swimming in the Gulf last night. Stocking in my hurricane supplies soon. I'm 52.
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CindyNY, one more thought to share.....as MexicoHeather has pointed out, vaginal spotting can be because of tissue fragility due to reduced estrogen. My OBGYN has suggested coconut oil: lubricate with it daily, everywhere, inside and out. Several women on this site have chimed in that it's also been helpful for them.
And, I wonder if Biotène mouth rinse would be helpful for gums? I found it really helped with my gum fragility and mouth sores during chemo.
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CindyNY, I started using both biotene toothpaste and mouthwash during chemo and continue to use it as I finish H&P treatments and use of anastrozole. I haven’t had any problems. I do notice when I use other toothpastes my mouth burns while brushing
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Ever since I started Arimidex all my bones and joints ache, cannot sleep right, wake up covered in sweat, suffer from fatigue and ringing ears. Am I alone or have others had these issues. Beginning to think my cancer is back because it has been 2 years and I thought the side effects would start to get better.
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Katidid193 I've been on Anastrozole for 6 months. Still stiff and achey, and sleep is disrupted. Not hugely more than it already was, before breast cancer, though. I think that I have that no matter what at my age and with arthritis, but it's worse on the AI. Not tons worse, but worse. I feel miserable (grumpy, achey, stiff, brain-foggy) on the days I don't exercise. Most days, I have 1 hour of exercise first thing in the morning, working all muscles & some aerobic work. That time of day works best for my brain and body and my life schedule. Once I got this routine going (after recovery from final reconstruction surgery and once I was cleared to exercise), the joint pain gradually got a lot better. I don't have ringing ears---ugh, that sounds terrible! I do have some sweating and hot flashes, but they're not as bad as during menopause, and not really terrible, just kind of startling. Fatigue does not sound fun, I'm so sorry! I did have that, but just for the first month on my AI.
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Katidid193- I've found similar benefits when I exercise like hiking lady, the hot flashes are less intense. I DO have ringing in my ears, but that started after taking an antibiotic for an infection I got after BC surgery and it's never gone away.
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Chiming in to share my journey since BC 3 years ago (I'm 55 now)...
I've worked hard to change as much as possible about my prior way of living because I figured that if I didn't want the cancer to come back, then I had to do things differently. I did this by thinking about my powerful internal immune system as I made choices about what to eat and what to do. My immune system is able to defend against cancer at the earliest of stages and I need to support it as much of possible. I've done a ton of research— finally learning a bit about biology, cancer (esp BC), nutritional and lifestyle science and I truly believe that our amazing bodies can find and destroy bad cells better than most drugs— if only we can get out of its way and give it what it needs.
So, I exercise daily— not crazy cardio classes but regular 30-60 minutes of walking, yoga, pilates, light weights and if nothing else then an evening stretch for 20 minutes before bed. I try to stand vs. sit and walk v. stand-- all day, every day (I'm standing at my desk as I type). I eat a Plant Based Whole Foods diet (organic as much as possible), and drink a ton of good organic herbal teas and green/white teas, and make sure that I sleep in a very dark room for at least 7 ( 8 is even better) hours a night. I take a few select supplements: D3, B12, liquid tumeric/ginger/dha combo, resveratrol, mushroom blend and a good quality liquid probiotic. Twice a year I do a 5 day fast (actually a fasting mimicking diet called Prolon). I have eliminated dairy, meat, foul, fish (IMO essential), alcohol (including wine), packaged/process foods and refined sugar (mostly). I try to avoid plastic and chemicals (cleaning, sunscreen, makeup, soaps, poisons, etc) as much as possible and never eat anything hot or acidic out of plastic container. I filter my water instead of water from plastic. I've also transitioned out of a stressful job and avoid toxic people and try but instead spend more time with my family, my daughter and friends. I make a point of having sex (w/almond oil) with my husband regularly-- not only for our relationship but to keep my lady parts in good working order (V-Magic every day after bathing seems to have really helped). I have started to volunteer with a favorite charity which has given me some hope and some new friends.
I'm not perfect about all of it all of the time, but it's my new lifestyle, my new habits. I have to admit that I've never felt better, my labs are perfect and I feel confident that I will live to a wise old age.
Some of my favorite books (and recipes) to which I still refer: BREAST: THE OWNER'S MANUAL by Dr. Kristi Funk; HOW NOT TO DIE by Dr. Michael Greger; THE BLUE ZONES by Dan Buettner; FORKS OVER KNIVES (website, cookbook, documentary; ChrisBeatCancer.com (blog, interviews).
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Thank you ladies! I brushed my teeth using the new toothpaste this morning, no blood. I'm going to look into the mints too, MexicoHeather! MACTAZ, I'll try the mouth wash too.
Vaginal spoting issues, fragile tissue makes sense w/o estrogen. I'll be glad to get the ultrasound over with.
❤ love this group! Never alone.
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CindyNY,
All the SE you mentioned with the exception of night sweats I am experiencing. I have been on anastrozole for about 3 months now and I’m continually learning how to feel better while taking it. I still ache, but ached before so I bumped up my exercise and aches seems to be slightly improved. Definitely my stiffness is better due to moving more. I’m trying lots of supplements my OC told me to try but I don’t think I’ve seen much improvement from that. I’m really just trying to get through the next several months until I’m finished with herceptin and Perjeta then I can sort out what SE are from the anastrozole. My OC said SE from chemo could last up to one year so I’m hoping that by end of December most will be gone, fingers crossed.
Take care, I love this site also, wouldn’t have make it through without it. Everyone is so helpful.0 -
jpBCfree sounds like you are a very good example of what we should be doing ideally! Although in regards to having "sex with husband regularly", it is not of much interest to me since being on these pills...they seem to have killed my libido.
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@worrythepooh- there's another board for that SE that you can scroll through....I'm right there with you so back over there. Everything seems like work lol.
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There was a lot of discussion about Teva versus other drugs when I first started coming to the board. The general consensus was that for most of us, Teva had fewer SE's. It's gotten harder to find but obviously not impossible. It has to do with "fillers" in generics. Some have also gone to non-generic with MO's prescription. Someone can tell you how to get it relatively cheaply.
Before BC I took Calcium with D and C & G for joint pain and still do. I am 73 and take other medication for other conditions related to aging and consider myself healthy and all my labs are in normal range. I have added biotin (which hasn't seemed to help my thinning hair much but my nails are in great shape) and claritin at the suggestion of folks here. My MO told me to take Turmeric/curcumin.
MO switched my noropriplyn for venlafaxine and my hot flashes have gone away. Joints are pretty good and I still have my original hips, knees and shoulders which is more than many of my friends can say. Bones were GREAT at first dex scan.
I switched from anastrozole to letrozole about 8 months in. Mood is much better and headaches decreased in frequency and intensity. Like the teva versus accord, I think we react in different ways to various drugs so if one isn't working, talk to MO about a switch.
I've made relatively few life style changes although I respect those who decide to do so. If I were younger, I may have felt differently but for me it was QOF issue. I also gained more weight than I'd lost after I went off Atkins (I'm really dating myself here!) so wasn't enthusiastic about losing the carbs. In fact, I am a few pounds lighter than before BC.
MO is currently saying "take it as long as you can" but hasn't specifically talked about years. I probably will quit at 5 years (at age 76) but research is moving very quickly and I will look at it at the time.
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