Doing Well on Aromatase Inhibitors (AIs)
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I will have a bone density test before starting AI.
Julie
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I was told to wait about a month after finishing radiation so that any AI issues could be distinguishable from radiation after effects
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My MO had me wait a month and a half after rads before starting the AI. She wanted me fully healed from rads. But others here seem to have started before rads. All depends on your MO.
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If I had taken my AI (letrozole) when the oncologist wrote the prescription, it would have been a month after radiation, but I waited until it had been a good two months after radiation and I have no regrets. I'm a "one thing at a time person" generally, and I wanted to fully recover from the radiation before I started having to deal with the AI. Sure enough, the fatigue from the radiation wore off after a little more than a month and I started getting my old energy and self back. I had a good two weeks then before I started the AI, in which I really felt like my old self again; like there was hope and possibility for the future. Wouldn't you know as soon as I started taking the AI (Jan 15,2020) I started to feel awful and continue to do so. One of the only reasons I actually continue is that because of those two good weeks that I experienced, I know there is a "real me" still in there somewhere that will hopefully re-emerge at some point. Even if it takes years, I like to think that buried under the side effects is my old self that I am waiting to be again. I would have never had those real good two weeks, or been able to separate the radiation side effects from those of the AI, if I had gone right from radiation to AI when the oncologist wanted me to.
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My MO said to wait. That way if you are having side effects you can tell the difference between SEs from radiation and those from AIs. I waited and was glad I did has I had some SEs from AI. I breezed through rads.
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Started AI about 6 weeks after radiation completed. Glad I did it this way, as it allowed me to feel "recovered" from radiation fatigue, etc. before starting in on another part of my treatment.
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My radiologist wanted me to wait until my treatments were over before beginning Arimidex. The rationale was if there were any SEs they would know if it was the radiation rather than the Arimidex. BTW my radiation treatments went very well.
This May I’ve been taking Arimidex name brand for four years. For those of you just starting, try not to worry about possible SEs. Everyone reacts differently. If you’re older it’s really difficult to know if the aches and pains are from the aging process, the AI, or both. Overall, I’ve tolerated it pretty well. As with most things some days are better than others. Such is life.
Love to all.
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I agree , don't worry about side effects but be aware of what some of them are and pay attention to what your body is telling you. Depending on the severity of the side effect, your doctor may want to prescribe something different or maybe a different dose or they may have suggestions for dealing with the side effects. Be the squeaky wheel. One example I have is a drug I started taking for blood I wish I had told my doctor immediately about a persistentI wish I had told my doctor immediately about a persistent dry cough. It was almost a year before I did, and she explained that it was a side effect for some people on that drug and immediately prescribed a different one. the cough went away and the other drug doesn't much better job of controlling the blood pressure
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I am almost 4 yrs into taking the AI. Tolerating well, all things considered. A recommendation re: bone strength - Have one of the doctors on your team refer you for Physical Therapy to obtain specific exercises to help prevent bone issues.
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Posting because it's been a year since I started letrozole. I had chemo, then a month off then rads then 10 days after rads had my ovaries and tubes out and started AIs 10 days after surgery on March 1st. I def. had more hot flashes during radiation than on AI. I would say I had more hot flashes when first taking AI but it has continued to dwindle. I'm active and run almost every day. If I sit for long periods of time I will get stiff. I do intermittent fasting I eat btwn 11am-7pm and I weigh myself daily. I haven't gained weight due to the Letrozole. As far as I can tell it hasn't affected my moods and I do have anxiety but that is due to a fear of recurrence--not the AI.
I take the AI around 8pm at night. I was having some trouble falling asleep so I've started listening to relaxation audio to sleep.
As far as sex goes, lots of lube.
Hope that helps anyone reading!
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BlueGirlRedState-- I agree with you about telling your doctor about everything. About 6 months after starting Tamoxifen, I was struggling with joint/muscle pain so I went to a holistic doctor. He put me on turmeric and ginger (game changer!!). Around the same my doctor put me on fish oil (and aspirin) due to Tamoxifen's slight risk of blood clots. About 6 months after that I started having nausea and dizziness combined with extreme bouts of burping,,,,not acid reflux, just burping, sometimes for a hour or more which then went on for close to a year. I did loads of research and found that a lot of people complained about Tamoxifen being dehydrating so I upped my water. A lot. And it helped. A lot. But still there was some nausea and dizziness and the burping was still pretty bad. Just figured "damn Tamoxifen" and thought it would all go away when I stopped. 2 years after stopping the nausea and dizziness are basically gone but burping still happens and sometimes it's enough to CAUSE nausea. So finally I decided to do an experiment and stopped ALL my supplements and started them back one at a time. Turmeric I didn't quit because my doctor says the new studies show it to be basically miraculous for preventing heart issues ( I have 2 siblings who had heart attacks young. One at 39 who died and one at 55 who barely survived). After going back on my Vit D, multivitamin, etc I found that ginger and fish oil were both causing me to burp (and not the usual fishy fish oil ones that happen after taking it.) so I stopped taking them. A couple of months later I was seeing my GP for my annual and he was going over what supplements I was taking and I told him about my experiment and that I was no longer taking ginger and fish oil. He repied "I wish you had told me you were having that issue because I know that fish oil and ginger are both mild muscle relaxers and can cause the valve that prevents air from escaping your stomach to relax too much and cause burping."! Wait. What?! 6 years of this crap off and on, mostly on, and I could have stopped it a long time ago? Dang. And I was so sure that it wouldn't be the ginger because we all know ginger "settles" the stomach and everyone said if I'm not tasting the fish oil, then that wouldn't be the problem. So yeah. Tell your doctor everything. Mine happens to be from Pakistan and loves both eastern and western medicine which may be why he caught that. But regardless, it pays to speak up!
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lala1,
How do you take the turmeric? I have started using it when I cook, but wondering if you take it in supplement form? I am curious about a holistic doc. I may end up seeing one...thanks!Julie
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lala1 - fish oil........ I have not used in a while. But I do remember getting fish burps and stopping. Somewhere I found a fish oil that claimed to be burp free, and it was. I guess I quit again, because could not get locally, and just sort of let things slide off the table. Maybe it is time to find it again. Do have concerns with toxins and accumulating in oils.
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I solved the fish oil burps by not eating them in the morning before breakfast which is a light meal. I eat them before lunch or dinner then it’s not more than eating a fish appetizer. The turmeric I get is in capsules from CostCo also contains black pepper which is supposedly important. I started taking it after reading this board but when I mentioned it to my oncologist she said she takes it too. Generally good as anti inflammatory
I have aches and pains but was already post menopausal so can’t say what it is due to. I refer to,the anastrozole as menopause 2.0. Hot flashes came back and my skin is dry. Aches and pains but can’t say if it’s worse than before the anastrozole. I’ve been on it for a year now and it is not a super big deal.
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Juju-mar -- If you can see a holistic doctor do! Mine basically saved my sanity after all my SEs from Tamoxifen! I take the turmeric in capsule form. I take either Gaia extra strength, which was the one recommended by my holistic doctor because it's locally sourced and made in NC and he's seen the plant, or I take BioSchwartz. Both work well for me. I take 1 capsule a day which is about 500mg. The doctor told me to start with one and if I saw improvement in my aches and pains to continue that dose. If I saw no improvement go to 2 capsules a day. If that worked stay on it for a few months and then maybe dose down to 1. But if 2 doesn't work, then he said it probably wouldn't work for me at all. I did quit taking it after I stopped Tamoxifen figuring I don't need it since all my aches went away (eventually!) but when my GP raved about it, I resumed my usual 1 capsule dose. Just as an aside, my very active 83 year old day who needed 2 knee replacements and had quit all his activities due to pain, started on turmeric. Within a month he was back to playing golf every day as well as running with his buddies. He said he felt amazing! And as a bonus, he only ended up needing 1 knee replacement and the doctor said his recovery was way quicker with the turmeric. (Please note you can't take it before a surgery as it's a bit of a blood thinner.). And yes, it does need the black pepper in it or your body doesn't absorb it well. So yeah, I'm a BIG fan!
BlueGirlRedState -- I bought my fish oil from Vitamin Shoppe which is supposed to have very good fish oil. Every once in a while I'd get a bottle that smelled just a tad "off" and the VS would quickly refund my money. But my doctor isn't convinced we all need a fish oil. My MO loved putting his patients on it but I feel part of it was because fish oil is a bit of a blood thinner which works well with Tamoxifen. But since I was/am on turmeric, I get the same benefit. And I also take a baby aspirin but only twice a week. I was getting severe bruising on aspirin and my docs all feel twice a week works as well as once a day without the bruising issues. So I'm down to a multivitamin, turmeric, Vit D (another must have according to all my docs to prevent recurrence) and I take Olive Leaf Extract. It was recommended when I kept getting colds. Haven't had one since I started which was 6 years ago!
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I was petrified to take the prescribed Anastrozole. I had the prescription and read all the horrific posts. I am very active and was not wanting to have a medication debilitating me. I found this thread and for once felt hope. After I put it off for a month and a half, I decided to see how it would go. I have had no real SE to speak of. Maybe a little headache on the top of my head. But I wanted to post for those of you hesitating like I did, i am only 2 weeks into this but began by taking magnesium, Skin, hairand nails, antihistamine (Allegra) and will add glucosamine per the NP recommended. I got a diagnosis of osteoporosis the same month as BC so I was started on Fosamax. So far so good on the AI. No outstanding side effects and the ones I suspect .... well I’m not sure whether it really is a SE. I hope it stays this way but the NP is willing to try different options and bring in holistic medicine with Rx. There are good outcomes and I really want people to know that.
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Beautiful Ladies, thank you for sharing your experiences. I just want to add my own experience when I start taking turmeric, fish oil, and baby aspirin, I start getting bruises. I learned that they all are blood thinners and the combination of all didn't work for me. Now I get fish oil half the recommended (Nordic Naturals brand), I take organic turmeric with food and not as a supplement. I stopped baby aspirin.
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Cinnamong, I had a little headache on the early days, and it completely disappeared a few months down the road. I am also very active and the AI treatment hasn't slowed me down at all. Swam a fast couple of miles this morning with two young guys. Keep up with vid D and calcium. I went from osteopenia to osteoporosis my first year on AI.
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Ive been on anastrozole for a year and a half and have the usual side effects like hot flashes, and mild joint pain. For the past couple of weeks ive had dull headaches on and off which i put down to side effects on anastrozole. On wednesday i experienced kaleidoscope vision which worried me slightly. It only lasted a few minutes and I had double vision for a mintures after that. I contacted my mo and she scheduled me for a brain mri this Friday. Since wednesday ive been getting the headache and vison problems more often. Hopefully its nothing but friday cant come soon enough.
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Mariett, the silver lining of BC diagnoses is that doctors are extra cautious when it comes to unusual symptoms. If there were no BC diagnoses, probably your doctor would just dismiss the symptoms. I am glad your doctor is extra cautious to check to make sure everything is OK. Waiting for the test is not easy. If it was anything urgent, he could have asked to have MRI the next day.
Maybe someone else has similar experience that can share it.
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Mariett - it sounds to me like side effects of an ocular migraine. I get them now & again, I've even lost vision in an eye. But more common is the "color show" of lights - can go on for 20 minutes. I take Excedrin Migraine and avoid the headache when it happens. I'm hoping that is all yours turns out to be. Best of luck & keep us posted.
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Yes, I also get ocular migraines and what you describe sounds just like those! And I do lose vision in my right eye with a migraine. But good your doc is being cautious!
I have been on Anastrazole since last summer. I do think my fingers are stiffer. But what I really noticed recently is a "thickening" around my waist line. My weight is stable and BMI around 20, and I have been exercising a lot, but all of a sudden I have a "pooch" and my waist is just bigger all around. Is this from menopause/AI? Or just normal aging? It just seems to have happened so suddenly! Anyone else?
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Mariett sometimes I get wavy vision and will get a bad headache if I don't take something like motrin etc before the wavy vision disappears. Hopefully you are "just" having a migraine. Sending positive thoughts your way.
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Lilyishere--I also took turmeric, fish oil and baby aspirin and bruised very easily. One day I looked in the mirror and noticed a big bruise up under my jawbone along the side of my face just happened to have an MO appointment that day. Best we could figure it was from me resting my face in my hand while on the computer!! So he had me cut the baby aspirin back to twice a week. He said studies show it works just as well as every day. Bruising mostly stopped. I recently cut out the fish oil ( I figured out it, combined with ginger, were what was causing my frequent bouts of burping because they are both slight muscle relaxers) and now rarely get bruised. (And best of all my upset stomach and burping issues have resolved completely!!)
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Sorry for the delay in posting. I also have developed a Pooch just above my pelvic bones. Probably the medication.
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Hi everyone! Hope you are all having a beautiful Spring wherever you live and 2021 is a much, much better year for you!
I've been taking anastrozole since January 4 and everything - and I mean *everything* - is going well.
I've only had one (1!) side effect: A very, very occasional and random slight warm wave that washes across me and then, bop!, it's gone. No big heat and no sweat. No problem sleeping, either.
I'll see the oncologist again at the end of May, first time since January. Next mammogram is on my regular schedule in August.
Hang in there!
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Hi again! Saw the oncologist on Wednesday, as scheduled. Good appointment.
Scars are healing well. Manual exam by MD revealed all AOK, but the lumpy scar tissue sure is stubborn.
My lipoprotein panel was excellent with values that put me in the same category with *teenagers'* scores, according to Cleveland Clinic.
AND ... I now have 2 side effects to the AI now: the extremely, very occasional gentle warm wave that washes over (fewer of those) AND my hands are stiff and hurt in the morning. I massage my fingers and palms and the stiffness goes away stat.
Doctor was kind to say nothing about my weight - of course I should lose 10 pounds, but whatever I am, I find that's always true! - and the high BP score they got in-office was generously chalked up to "white coat." At home, in the morning, it's a steady mid to slightly upper 120s over 60 to 65.
Hope you are all well and will have a good 3-day holiday!
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Glad you had a good appt Michele!
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Congratulations MicheleH57. Such wonderful news.
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hi all
I've been on anastrazole for almost 3 months and having joint stiffness. I'm going to ask my MO about switching to another or trying an every other day regimen with it and see if that's an option. The hot flashes are very infrequent. I'm an active 55 yr old and hate feeling like I'm 80! What brand does everyone take
Julie
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