Doing Well on Aromatase Inhibitors (AIs)
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Hi - just thought I'd chime in on Zometa infusions, since Hiking Lady mentioned some possible post-treatment issues.
My MO told me to take an NSAID before the infusion and to be well hydrated (and stay that way). My infusions are every 6 months and I've never, ever felt flu-like symptoms after them. I did, late in the day after the first one, feel for a few hours as though I might be coming down with a cold (chills, tired) but after my workout went to bed early with a heating pad and a book and indulged in a couple extra hours of down time. I woke up feeling absolutely fine the next day. I've only experienced that once. Subsequent infusions have been non-events.
I do see some women reporting worse side effects but I hope people understand that those aren't necessarily a given. I know many more women who breeze through than otherwise.
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I'm 55 and my pre-Armidex DEXA scan showed some slight ostopenia. My MO told me to increase my Calcium/magnesium/D and D3 intake, and is disinclined to give me Prolia or other bone treatments unless things get worse.
I take supplements, as well as Claritin and Naproxen for joint pain and Effexor ER 37.5 mg for hot flashes. (Which are reduced, but not gone.). Walk about 2 miles daily and do resistance bands and light weights as part of my PT exercises, which keep me feeling "looser" and hopefully also help keep my weight low.
I am also trying a few drops of 18:1 CBD:THC oil for the hot flashes, and it does seem to help - within minutes, which is great.
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I'm 50 and also have osteopenia, diagnoised earlier this year. I'm surprised that so many of us were diagnoised before starting an AI.
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Me too! I'm 52. My baseline DEXA scan was crappy. All points measured showed ostropenia except one whis was osteoporosis. I am small (55" 105lbs). Former college athlete, active drank milk my entire life (still do). I thought it would have been a better baseline. Taking calcium, D3, and magnesium until my appt with MO in December.
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I’m 52 with mild osteopenia. I drank lots of milk as a kid, eat yogurt now, have taken calcium/D3 for years. I am, however, a couch potato with small bones and a family history of osteoporosis. I like to walk, and I take a weekly yoga class that I love. I’m working to be more consistent in my amount of exercise, and add in more weight bearing exercise. I’m only a week or so out from my last radiation treatment and am dealing with fatigue from that. Once that eases a bit, I’m probably looking at joining a gym (sigh.) My MO isn’t suggesting osteoporosis drugs at this point. I am experiencing worsening hot flashes, but no other side effects from the anastrazole. I feel a little gratitude when I take it each morning, knowing that it’s decreasing my risk of the cancer coming back.0
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Hopefully this finds all of you doing well and with few or manageable SEs. Monday I saw my oncologist and we chatted about how I’m doing on Arimidex (I’ve been on it 14 months) I told her while I’m able to push through I just hurt. Especially my hands and feet are so stiff and sore. She gave me a RX for aromasin (exemestane) and said try it for 15-20 days and see how you feel. She followed up with if I feel awful go back to arimidex but if I notice a change to stick with it. She also gave me 5 months of refills. Today I saw an RA specialist just in case, she said she doesn’t believe it RA but ordered a few more tests to be sure. She agreed that the 2 do not have a 1 size fit all concept. I picked up my RX 1st pill is tomrrow. Wanted to see how you guys are doing that have made this switch. I did go back about 3 pages of this DB. So happy to be able reach out to you all.
Hugs,
Michelle
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RE: Arimidex and bone loss and DEXA scan
My MO said, the first time we met after my diagnosis in April, that he'd be recommending chemo and then an AI after my surgery. And, he said that AI's usually do reduce bone density, so he'd want me to have a DEXA scan before starting the AI so that he could also plan how to support my bone health. I chose to do the DEXA scan when I felt up to it after my surgery and before chemo started, so it would just be done, and be one less thing to do this fall when chemo was over and it was time to start the AI. So, in June my MO told me that his plan for me would include the Zometa infusions, since the scan showed osteopenia.
Hopeful82014 Thank you for that positive description of the Zometa infusions being not that bad. My RN who answers "oral medication side effect questions" at my oncologist's office also said that people usually react to the first one and not the subsequent ones, like your experience. Yay!
Magari Thanks for the info on what you take for side effects
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I'm not sure who handles bone density issues. In my case, my PCP referred me to an endocrinologist for consult after my last scan showed worsening osteopenia. Endo said with my current results, he would not start bone meds. However,as I am on an AI, I could discuss changing from an AI to tamoxifen if this did not significantly up my reoccurrence risk. He sent report to MO though my next visit isn't until May. I think it's lost in the shuffle. Since I've been having a lot of dental work and am still not finished, I haven't pursued a response from my MO. Mostly struggling with who makes this decision because I know there are bone meds that also help prevent reoccurence. Thinking I should complete my dental work and then pursue my MO. Am doing calcium, vit D and exercise in the meantime. When I read these posts, I see that some MO's are very proactive about treating bone density issues and mine has not been to date. Wondering with whom do I make this decision? Also wondering if tx is a factor of age as I am 66.
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There are so many "possible" side effects for AIs and we may or may not get a few. I think it's so important to eat healthy and exercise because as we begin to age, these side effects can happen even if we're not on AIs. I've only been on anastrazole since January and have really been focusing on exercising because I wasn't before. I think it's helped me alot. Walking is a wonderful outlet for me because I can go out, listen to Pandora, and just zone out for an hour.
I was told at my last bone scan that I was pre-osteoporosis, is that the same as osteopenia? Doc said I don't need to do anything for it yet and we'll see in 2 years when I get another scan. In the meantime I think I'll attempt some weight bearing exercises. Have a great weekend.
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Ellyn27, agree about the effectiveness of exercise. I had been doing hour-long walks every day, but now that cold weather is setting in, it will be more challenging. I really hate the cold (am in Ohio). I also do yoga, work out at the gym and had been doing bicycling as well. Will have to find cold-weather adaptations for my outdoor activities.
Yes, osteopenia is the same as pre-osteoporosis.
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Hello to all. Guess I will join this "club" that no one really wants to be a member of. Dexascan two weeks before BC diagnosis showed mild osteopenia of spine (at age 62.) Have been on AI (Anastrozole) since April 2017. Doing tolerably well re: aches/pains. I take Curcumin now + have taken high quality algae based Calcium + D, Omega Oil & Glucosamine/Chondroitin/MSM for many years. Also use a homeopathic remedy, Arnica & Arnica cream for joint aches/pains. Dexascan scheduled for 11/30. MO has already spoken to me about Prolia injections - seems to think they are a foregone conclusion.
Miranda - Whereabouts in Ohio are you? I am in N KY, about 10 miles south of Cincinnati. Unseasonably cold here today, but at least the sun is shining.
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CeliaC-
I was taking Curcumin- ok'd by my MO and a cancer specialist movement Dr. I was seeing since I was having issues with joint pain after ooph and going on Arimidex.
Recently I stopped taking Curcumin, as I was seeing conflicting opinions on whether it is safe for us ER positive ladies. I keep meaning to reach out to both my MO and BS to see what they have to say.............. I have seen a marked uptake in joint pain since I stopped taking it, and I want to continue it.
Opinions??
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CBK - Started on Curcumin (he uses a Mayo Clinic website to check) only after MO ok'd it in April 2017. At latest MO visit a couple weeks ago, we reviewed all meds/supplements & he did not mention a problem with Curcumin. On one the BCO topics, (maybe this one?) recollect someone else mentioning Curcumin now thought to be "not good" for ER+.
Would also be interested in Opinions.
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MickeyB17 If your MO isn't managing your bone density by keeping track of how an Aromatase Inhibitor is affecting it, then you're smart to self-advocate, and consult with PCP. MO should be managing this, I think. AI (or Tamoxifen) is an oral medication for cancer treatment, and MO's are in charge of cancer treatment, so they're also in charge of managing their side effects. So, it might be worth specifically checking on this with your oncologist and having an appointment just to talk this issue through. The older we are, the more serious it is to have a fracture. Something we all have to worry about if we have worsening bone density.
My MO sends all of my treatment information to my PCP. So, she knows what I'm on and why, but the MO is managing anything related to cancer treatment. He ordered the DEXA scans, and has planned the Zometa infusion treatment for me. He's chosen this treatment because it will protect against bone metastasis as well as protecting bone density.
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HikingLady - Thank you for the reply - what you say makes sense. I'm a little intimidated by my MO, though he's very nice - he has been in the news a few times as a spokesperson for BC research - so I think he's too busy, probably dealing with others that are worse off, etc. Those thoughts do not serve me well. I will call, I have a part that can shrink/avoid that needed a pep talk.
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After ten+ years on Arimidex, I'm on a 2-1/2 month break. I stopped on October 20th and have yet to see any decrease in the side effects I've attributed to it. My arthritis is just as bad (weather aggrevated). I'd like to say my sleep pattern has improved, but that might just be from a change in my schedule. My prescription will renew in January, and I'm probably going to start taking it again if there aren't any dramatic changes. I am going to have a bone density scan before then, but it's never shown any major depletion so I don't think that will be a factor.
Anyone else on a break or have taken one? Can you give me an idea of what side effects dissipated for you?
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NancyD, you're on anti-hormonals for more than 10 years? My MO said 10 years was the recommendation. I've got 3 more to go.
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I am Stage III—my onc said he would approve staying on an AI as long as my bones hold out. There's no proof it doesn't continue working, especially for later stages.
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Thanks Nancy. I'll have to consider that in 3 years. I'm not having any significant SEs (just mild hot flashes sometimes), and taking that daily pill definitely reduces the fear factor.
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HI Nancy, I too seem to be on the 10+ years protocol if it continues to keep me NED. At 6.5 years and I've stopped counting since I have some years to go, at any rate, no matter what happens at 10 years.
My MO said that 1) because I was high risk) and 2) because research seems to be headed toward potential life-long AI tx since women recur at higher rates when they stop, that 3) I should prepare myself. So far okay on Aromasin. Mood swings, some hip joint aches from time to time. Just started low-dose lexapro for anxiety since Aromasin seemed to make it a bit worse. I already have generalized anxiety disorder and my dx and continued vigilance against BC sure didn't help my disorder.
I get a twice yearly shot of Prolia for bones because I'm mildly osteopenic. I think it's age-related more than AI related, but I embrace Prolia because it also seems to hold some protection against bone metastasis. However, since I have ILC and it has a higher tendency to move into soft tissue (abdomen etc.) I'm not too excited about the bone thing, although I have also had no problems with Prolia. Have had 4 injections so far.
Claire in AZ
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I'm new to this post but have been following the other AI post for a short while. This one seems to offer a more positive approach?? Anyway, am 2 months into Anastrozole with mega hot flashes (but, luckily, no night sweats) & back ache, but not much more that I wouldn't otherwise chalk up to age (75 in a few weeks). Will stick with Anastrozole for a while to see if my bod adjusts and SEs diminish. Am going to try apple cider vinegar capsules to address the hot flashes (try explaining hot flashes to concerned bystanders-- at age 75?!).
SO, the most important thing I want to share with you all...is BLINK. I'm a low-income senior (living alone, no kids) and, by necessity, had to research the most affordable way to underwrite AI. I spent $24 for my first 30-day supply at my neighborhood pharmacy but then found BLINK online, enrolled...I pay BLINK & they contract with various pharmacies. The one that offered the best price for Anastrozole was about a 20-min. drive from home. READY? I paid Blink $4.95 (that was with a $5 first-time user certificate); my reg. monthly cost is now $9.95. I take 5 prescribed meds so some I'll get via mail, some I'll drive to the further pharmacy and some I'll be able to get from a closer neighborhood pharm...BUT, via Blink, I'll be saving approx. $30/month over my previous Health Net co-pay (and that's for 30-day supplies, but when I switch to 90-day scripts, the savings will be even a few dollars more), and I even factored in my mileage cost. I'm only 2 months into this routine but if it fizzles, I'll let you know.
So I hope this may help any of you who count pennies like I do.
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thrdage- thanks for sharing! That is great news that you found a service that helped you locate the best deal on your Rx. Hopefully the hot flashes will diminish for you - mine did.
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Just wanted to say that my recent bone density scan showed no appreciable bone loss. So I'll go back on the anastrozole in January. Lately, though, my aches and pains have been almost constant. With the cold weather, and recent wet weather, I'm sure my drs will say it's just arthritis. But I might push for a more thorough scan in January since I haven't had one in over nine years.
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I don't know why the idea of AIs forever bothers me when I don't think twice about the daily medication of high blood pressure and cholesterol. Nancy, I just tell people that the AI's push people back into menopause with all its joys. Usually I get a laugh. MO gave me something last visit that seems to making the hot flashes less frequent but maybe it's just the weather change.
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The weird thing is that during menopause I never had hot flashes, not one. But I did have some pretty severe ones after starting Tam. But Effexor seems to have fixed that.
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Dear thrdage,
I'm glad to read that your SEs with anastrozole aren't too bad. I'd like to share something I found to alleviate hot flashes: ice chips/ice water. The cooling of the water and the distraction of crunching ice was helpful to move past discomfort. I handed down the "procedure" to my daughter-in-law who has shared it with her contemporaries.
I have been on Letrozole for 3-1/2 years and with the exception of pain in the right knee, top of femur and hip (which righted itself) I have been fortunate to be pain free. I'll be 70 next birthday.
Thank you for sharing about Blink. I'll put it to good use. Best wishes to you as you work your way to be the healthiest you can be.
Hygeia
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I ended up with horrible depression and anxiety.. so I have stopped them..
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Dear thrdage,
I'm glad to read that your SEs with anastrozole aren't too bad. I'd like to share something I found to alleviate hot flashes: ice chips/ice water. The cooling of the water and the distraction of crunching ice was helpful to move past discomfort. I handed down the "procedure" to my daughter-in-law who has shared it with her contemporaries.
I have been on Letrozole for 3-1/2 years and with the exception of pain in the right knee, top of femur and hip (which righted itself) I have been fortunate to be pain free. I'll be 70 next birthday.
Thank you for sharing about Blink. I'll put it to good use. Best wishes to you as you work your way to be the healthiest you can be.
Hygeia
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Ok so I've been on Anastrazole for more than a month and have had the obligatory hot flashes, no biggie since I've already been through menopause and a hysterectomy, hot flashes are old news. Then I had a bad flare up of peripheral neuropathy, blamed it on the Anastrazole, but no dice, it's just a flare up caused by the chemo i was on for colon cancer 3 years ago. Well, this week, I've been super achy, fatigued, congested, etc. I went to the doctor to complain about the Anastrazole and radiation, I thought it was both, but no... I have bronchitis and a sinus infection.
So, it's official, I'm on an AI and doing fairly well. And when I'm not doing well, it's not the Anastrazole. I will, however, continue to blame it because it's the new guy in my life.
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I'm nearly 6 months in on Arimidex/Anastrazole and doing well. The fatigue I experienced the first few months seems to be a bit better, as does the joint pain.
I do take Naproxen each morning and Krill oil at dinnertime for the joint pain. Effexor 37.5mg along with my Arimidex each evening for the hot flashes. I am also trying 18:1 CBD/THC oil when my first hot flash of the evening hits. It does a pretty good job of diminishing it within a few minutes, and warding off more of them. I may have one more before bed but that is far fewer than before and I do not have night sweats.
I take Calcium/Magnesium/Zinc and D3 for my bones and Biotin for my hair. I'm now 8 months post-chemo and my head hair, brows and lashes are all growing in thick and healthy.
Strangely, my leg hair, which was the first to return after chemo, has suddenly just about stopped growing. Instead of needing to shave every other day, I have almost no growth after almost a week. Anyone else experience this? I'd be perfectly happy if it remained the case, so long as it doesn't affect my other hair. My oncologist said it's not connected and shouldn't, but I can't help but be concerned.
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