Doing Well on Aromatase Inhibitors (AIs)
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CeliaC
Try dry needling from a physical therapist.
My insurance paid the visit. I paid the co pay and an additional $30.00
Coach Vicky
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I've been taking name brand Arimidex for 17 mos from Eagle pharmacy with manegable SEs. Just google them on line and you can call them direct. I get 30 pills for $30.
I also take 100 mg of Gabapentin at night which my Internist prescribed for joint pain. It has really helped me.
I try and exercise regularly.
Hugs to all
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Hope this message finds everyone well.... I have a quick question about Arimidex. I have been on arimidex for approximately 14 months and wondering if anyone has noticed an increase in their LDL cholesterol? I know I have read this is a possible SE. My doctor did a baseline blood test a year ago and I have had a small increase in that area. All of my other numbers are good, this is the only one of slight concern. Wondering what you ladies are doing to combat this SE...thanks in advance and appreciate all feedback.
Michelle
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My HDL (the good stuff) increased over 30 points after a year on Arimidex. I have a yearly physical with labs and will know my cholesterol numbers at the end of the month. i will share what I find out.
Coach Vicky
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I peek at this thread whenever it pops up--have not started an AI yet but am meeting with my MO today before Herceptin and am pretty sure will get my first prescription. I've been successfully putting it out of my head but it's been a month since I finished rads and I'm actually a little surprised I haven't started it yet (although I only see my MO every other Herceptin, so every six weeks). Kind of squinting through my fingers looking ahead. . . :-(
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Ingerp, I've been on generic anastrazole for 2+ months and it's gone smoothly so far. My only side effect is worsening hot flashes. I see my MO in early December, and will be asking her about an Effexor prescription. If the hot flashes were only during the day, I could deal. I'm getting them at night, and they're aggravating my preexisting insomnia. There are plenty of people on these threads who have been dealing with much worse side effects. Your experience could be different. Good luck!
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greenharbor - have you tried taking the AI at different times of the day? At night i had insomnia; switched to morning and insomnia cleared up. It took reducing bread and other carbs to bring hot flashes to a reasonable number. Effexor helped a little but I didn’t notice a difference when i weaned off (having bumped the dose to address other things) so I didn’t go back on Effexor.
I still eat carbs - just more consciously.
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I have been on anastrazole since 1/2018. I had headaches at first but they went away. I had hot flashes but those seem to have subsided as well (plus the weather is cooler so maybe I just don't notice it.) I have a hard time falling asleep, but I had that problem before the pills. When I heard that weight gain and joint pain could be a side effect on anastrazole, I decided that in 2018 I was going to get healthy by eating better and started exercising 2-3 times a week. I have lost 33 pounds since last January (my goal is 7 more). I've been taking cholesterol meds for many years and a few months ago I went for my annual blood work. My results: HDL went up (now in good range), LDL went down (now in good range), Triglycerides dropped from 186 to 95 (now in good range) and my total cholesterol dropped (now in good range). When I have my blood work done again, if the numbers are the same or better, I plan to ask my dr. if I can drop the cholestrol meds. I hate taking pills unless absolutely necessary.
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Ellyn27 ... that is great news about YOU taking control of your cholesterol and weight. Congratualtions!
Coach Vicky
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Thank you Vicky I will keep checking in on this DB.
Ellyn27- That's awesome news congratulations!
Saw my onc today for a follow up...we discussed the creeping of my LDL. She said that I am doing everything right and that it is probably the meds because the other 2 numbers look great. She gave me the option of switching to Aromasin if I wanted to see if it subsides the joint pain. (still undecided about that) I told her I have been exercising (doing orange theory classes) 4-5 times a week, and as of last week I have 2 days where I don't eat meat. Since chemo my body doesn't tolerate bread too well so I do my best to stay far away from it. Although I have found this organic seed bread that is soy free and has every seed under the sun in it, my body seems to tolerate it pretty well. ( sorry for the random ramble) she is going to check my numbers again in January to see if these efforts work. I told her I really dont want to have to take another med. Thank you Ellyn for giving me hope:)
Hugs everyone!
Michelle
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I posted on the other Arimidex forum, but wanted to run it by you ladies too
Long story short - ordered 90 Anestrozole by TEVA from CareMark. Received 90 day Accord Health brand. I'm so uneasy about mfg with different buffers, and possible different SE. Any insight? Do I just go with the flow & take it?
Local pharmacy has it but no override from my ins co to get it. And pharmacist said TECA bought other drug mfg, and even the TEVA brand bottle has different pills in it.
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Thanks, GreenHarbor. The prescription is waiting for me—I probably won’t pick it up til Wed and might wait til the weekend to start. I actually saw a NP today, not my MO, but she said it was okay to start every other day for a few weeks. Ugh. I haven’t taken a long-term prescription med since I was on the pill. Don’t know why this has me so jiggy. Maybe because I actually sleep pretty well and things are running pretty smoothly—I think it’s the idea I might be messing that up, and not for weeks or months but years
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Question to those on Letrozole - any problems with your eyes? My eyelids have been sore off and on, with a kind of burning sensation; am thinking it is dry eye which I have never experienced before.
Other than that, I am two months on Letrozole and no other concerns, hooray!
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akmom, I had dry eye right away with anastrazole, but haven't had it at all on letrozole. Strangely, it was only my right eye, but it was annoying -- had to carry moisturizing eye drops everywhere. Burning sensation doesn't sound good, though.
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Thanks miranda, will check in with my ophthalmologist. Appreciate the feedback.
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Ellyn, congratulations on the weight loss and improved labs!
Ingerp, I started Anastrozole about 10 days ago and so far it has been ok. My joints ache but that actually started before my first dose. Could not stay asleep last night and hope that was a one off thing.
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Ellyn congrats! That is very impressive.
Ingerp dont freak out just yet. I have few side effects on anastrozole. I sleep like a log, solid 8h to 10h a day. No dry eye either.
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Phoenix - for joint pain, continue taking generic claritin and up your exercise. I believe that's also what has allowed me to maintain my weight. I also take arthritic strength tylenol as necessary. Many advise a low carb diet, but at 72 I'm not willing to make many diet changes. DH would try to help me, but it would be hard for him too.
I sometimes have trouble falling asleep but I just get up and read until I'm drowsy, usually less than an hour. (I appreciate that's a luxury many of you don't have because of work and family obligations but for me it beats tossing and turning.) Once I'm asleep, not much wakes me up, including hot flashes. My husband was a general surgeon who often got middle of the night calls so I learned to sleep all night fairly early in our marriage.
Remember if the SE's from one of the AI's are intolerable, don't just quit taking them. Talk to your MO about a different one. It isn't a one drug fits all kind of thing.
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Today was my first dose of Anastrazole. My nose started running a bit. Gut complained a bit. Indigestion, very slight, and a Zantac solved it. This medication cuts my recurrence risk in half, so I want to take the med and get the benefits of it.
My MO spent a long time explaining the various side effects, possibilities, solutions, etc. to me. He said that in his (large) practice over many years, no one version (generic, Arimidex, etc.) is universally better. Each person is different. If I have trouble with one, he'll try another, and sometimes a 2-week break "re-sets" the body's reactions. He says that many people find side effects receding after 3-6 months, as the body adjusts. He also candidly said that sometimes it's the opposite; side effects can suddenly arise after many months without them. He does not do the "one pill every-other-day" way of starting out, for various reasons. He says that despite any challenges, he hopes I'll stick with it, since it has such a huge statistical benefit for me. More important for reducing future recurrences than chemo, in fact, for my diagnosis.
I am 61. I do have osteopenia, so I'll be having Zometa infusions (it takes 30 minutes) every 3 months. There will be 1-2 days after each infusion of having flu-like muscle/bone pain and overall feeling kind of icky and sick. This medication will protect my bones from future bone metastases, as well as keeping up my bone density.
I am so happy to see this thread, and hear everyone's good attitudes and positive stories about taking AI's.
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Hiking Lady, I share in your determination to take Anastrazole. If this little pill can shut down every last ounce of estrogen in my body and starve any cancer cells then I will take it for the rest of my life if I my body can tolerate it. I stared at the bottle
I too am 61 and have osteopenia. My MO offered for me to start on Prolia. I will probably start it within the next year. Do you have side effects from the Zometa infusions?
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bella2013 Today was my first Anastrazole pill. First Zometa infusion will be in about 2 weeks. Then again every three months. Dr. has explained that I'll feel like I have the flu for 1-2 days, with achiness and some misery after that infusion. Nurse explained that often the subsequent infusions are easier. After going through chemo, I feel okay about feeling icky for 2 days every three months. I've lived through worse! The Doing Well on Aromatase Inhibitor thread is very cheering.
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Thanks Phoenix and Laughing. HikingLady had a great post on another thread and I am going to adjust my attitude going forward. bella--both HikingLady and I are 61 with osteopenia. Should we start a club with a secret handshake and stuff??
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part of the club too, 60s and ostopenia, Lol! What an exclusive club!
My mo has taken me off Arimidex after three months. I thought my side effects were pretty mild but they are concerned about one of my fingers. Will see them again soon, kind of like to stay with the devil i know, the hot flashes have been worse off of it!
Anyone doing oral biphospanates instead of the injections? My dentist thinks they have less dental impact for me, and I have previously been on Fosamax.
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I'm 57 with osteopenia, can I join?
Currently taking letrozole, main SE so far is the dreaded hair thinning.bennybear, what are the dental effects of Fosomax? I've had one infusion so far.
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Ladies, fear not the dreaded anastrazole, I hated it with a deadly passion at first, felt like a creaky old lady(I'm a young!60) Heat waves,night sweats, joint pain. But gradually something happened. I stopped noticing the hot flashes, the night sweats, the joint pain! Now i barely notice the difference 😃 May i recommend you all start in on weight bearing exercises. I was a fitness trainer for years and have continued my weight training all through treatments. When i had my Dexa scan, my bones are like a 25 year old, even after all the treatments and a year of anastrazole. You dont need a gym, walking counts, and maybe get some dumbbells for use at home. But as a gym rat, i do encourage joining a gym, it's actually fun, with all the new classes! Try Zumba! You'll forget you're exercising! Your bones will thank you!
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Sorry I can't delete or edit. Urggggggg!!!
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I was found to have beginning osteopenia before my AI treatment in 2012. Was prescribed monthly 50,000 iu of D and calcium along with prolia shot twice a year. Before I became metastatic 2017 my dexa scan showed no increase or change in my bones. I now take 3000 iu of D and 1200mg of calcium a day and zometo infusions once a month. Never had trouble with bone loss except bone mets which are shrinking. I never really hear of D and calcium dosages. Cardiologists added 3000 mg of magnesium once a monthto protect the electrical signals in the heart to prevent QT that kisqali can cause. Jo0 -
JoE good advice about Vitamin D and Calcium, and Magnesium! All bone building. I suggest a liquid or chewable combination for calcium and Magnesium.. It's always good to supplement both, since they work synergistically. Cal- mag tablets often don't dissolve in the stomach, they're so hard , and so you don't get the full dose. I've been taking the chewable ones. I take 5000 units of D, as I've always been chronically low.
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both my oncologists prescribed the dosages. My nurse navigator always reminds me I must take them. She a sweetheart
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Miranda, of course you can join😃. Seems like most of the bone drugs have a very slight risk of jaw issues if you need dental work. So keep up your checkups and dental hygiene.
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