For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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You're welcome, Magari. I had heard that Prilosec is hard on the bones but dumb me didn't put 2 and 2 together to realize that AIs and Prilosec are not good together. I find Pepcid works just fine for me.
HUGS!
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leigh22, I've been on aromatase inhibitors almost 7 years. (April 1) Letrozole the first 6 and 1/2 years, side effects were so bad Dr. Let me have a month break and then started anastrozole which I'm still on. I'm struggling to decide if I want to continue or not. I feel the same way you do. The side effects are wreaking havoc on my body. I'm faced with taking more medications to counteract side effects. High, triglycerides and cholesterol, bones thinning, trigger thumbs, swelling. I had the genetic test to see if 10 years were better than 5. And of course there's a significant risk if I stop. It's hard to know if the risk/benefit ratio has shifted. I mean I feel like it may be doing more harm than good at this point, but at the same time I'm worried the cancer will return again. I see my cardiologist in April and will see what shape my heart is in. I'm not sure I'm willing to go another 3 years on these pills.
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Snickersmom - what about Prolia? I saw my PCP yesterday and he said because of the previous cancers I've had I can't take any of them except Prolia. He also said that there are several new ones coming in the near future that I should be able to take. Right now he’ prefer I wait unless DEXA comes back bad.
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For those of us who all of a sudden have high cholesterol issues...Saw PCP yesterday (he's a cancer warrior too). LDL is up significantly, total cholesterol is up too. Both flagged as 'High' on the labs. But HDL is through the roof. HDL (aka good cholesterol) is cardioprotective and balances out the high LDL (bad cholesterol) numbers. Because my HDL is so high he says I'm good. If HDL was not so high I would need to take something. Dietary changes and increased physical activity will not be enough to combat the cholesterol rise as it's the liver's response to the AI therapy/lack of estrogen. It's not what you're eating. It's not that you're not getting enough exercise. So if your HDL isn't high enough to balance out the LDL, ask about taking Prescription strength supplements to increase HDL (far fewer side effects than a statin). If that's not enough, ask for both the supplements and a statin.
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Lula - my MO says as long as my Dexa scans remain good, we will just leave things the way they are. Good to know they are coming out with some new options.
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So ladies. I’m happy to say my throwing up all night was a bad case of food poisoning and not a side effect of my first week on Arimidex.😳. Never thought I would be happy to have food poisoning, but being new at this, and thinking I had to feel like that for 5 years , I am much relieved, and will not have Oysters at that place again! Phew!!!😃. Thank you all for listening.
I also didn’t realize brands mattered. My bottle is from Accord. I’ll ask for the other when I get refilled next month. Thank you all
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You might want to see how you feel first. I switched from Accord to Teva because of all the talk here and found the side effects were worse. I am now back on Accord.0
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Good idea. I will see how I feel on Accord and see how I feel. Now that I know I won’t feel like that food poisoning night 😳 Thanks
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Yes, oysters are delicious, but after a bad batch, I am also avoiding them now. Glad it wasn’t the pills upsetting your stomach.
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Today, 3/1, is my 1 year date for starting Anestrozole. BF said not sure he should say congrats. I said, YES, because its one year down.
Leigh - doing 6 years is GREAT. Deciding enough is enough, with health havoc, is fine. You have to do what's best for you, always. As I stated above, 1 down & 4 to go, I hope no more than that. Best wishes to you & thanks for keeping us in your loop. ❤
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Cindy, congratulations on one year!🌷❤️🐾💐
I am 9 days today! Slow but sure but we have to celebrate our milestones! I hope you did something nice for yourself. ❤️❤️
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Cindy--congratulations! That is a wonderful milestone. Good to hear you're plowing through. Hopefully it isn't in your brain space much any more.
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Wow! Scary article I just read from American Cancer Society on research & the link between women taking Anastrozole & having a huge risk of getting diabetes! Now I know why my blood sugar level jumped up to 6.4 within a short time of being on this hormone. I started it in August & have severe joint pain & arthritis from it & hot flashes, mood swings & hair thinning! Not to mention now close to getting diabetes!! No sense in going off the hormones now & risking cancer again because they told me once I'm actually diagnosed with diabetes I'll always have diabetes & can never be cured of it. Breast cancer & it's horrible treatments are devastating! I kept telling myself that I'm going to beat this thing & live a long life ... after finding out that the Anastrozole will give me diabetes, I feel worthless, doomed & feel like giving up
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I’ve had diabetes for 19 years, wasaaaay before cancer came into my life. I’ve never felt doomed. Yes, it’s true there isn’t a cure for it yet. But it can be controlled quite well with diet and meds. For the majority of people it is genetics that will make it manifest itself. Not that candy bar you ate
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BADLUCK - I quit anastrozole after a few months becasue of SEs. (Joint stiffness, trigger finger, worry about oesteoperosis etc). After several months of no hormonal treatment, I started Tamoxifen. DR. was not supportive of quitting anastrozole, but did support my decision to use Tamoxifen. Link to diabetes is new information, and scary. I worry about diabetes because of family history and eating habits when I was younger. So far fast blood sugar levels and prediabetes check have come out ok, but I wonder if 3-5 year check is enough. A week ago I heard a presentation for diabetes control from an ND. She really emphasized limiting all carbs, no/little sugar, fiber, exercise, stress levels. I think she was probably more conservative than most primary care givers on acceptable HbA1c, blood sugar at rising and 90 minutes after eating. She mentioned that the diet she advocates is harder for vegetarians, and that a good multi-vitamin, supplements are probably needed. I eat a lot of carbs, cutting back will be hard. I do not eat much meat. I like salads, but eating like a rabbit, does not sound fun.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil. For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinal node removal, negative. – 1. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinal nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. 2/2019, trigger finger and stiffness much better.
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Our oldest daughter has had juvenile diabetes since she was 10 - she's now 48. She does extremely well because she is always counting carbs and watching what she eats and drinks. Same can be said for adult onset diabetes. We have no history of either kind of diabetes in our family. None. Eating habits at an early age and/or lots of sugar hadnothing to do with it. I felt so guilty until her docs at Joslin Clinic in Boston said quit beating yourself up. There is nothing we could have done. Shit happens. My husband was diagnosed with pre-diabetes about 8 years ago. We went on Weight Watchers, started walking and exercising, and he lost 68 pounds. When they tested his AiC, he tested in the normal range. Best thing to do is watch the carbs, as little stress as possible, and exercise.
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I haven't posted here since beginning my radiation in December, as life has just gone past in a blur since then. I am supposed to start taking the Anastrazole now, however I am pretty terrified. I know some people say they don't have any side effects, but it seems reading through this thread that most people do feel not too great on it.
The thing is we are booked to go away at the beginning of April for a one week holiday, and I really don't want to be feeling crappy while I'm away! My doctor was not very keen on my delaying the start for a month, but I am concerned about going to a foreign country and feeling sick/joint pains etc possibly?
I don't know if my delaying it is wise or not. I would much appreciate any thoughts or opinions on this.
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Do remember those who post here are having issues. The ones who don’t, and they are many, don’t come back to post their success stories.
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I suggest just starting it. Just stop taking it and reassess, if it really affects enjoying your trip. Lots of people do just fine, and their side effects are very minimal.
I had a few things I noticed right away, but nothing that would have ruined going on a trip. Some stiffness. But, I already had some, and it's not a ton worse. I felt a little sleepy in the daytime for a few days, but who knows if that's why, and it definitely went away after a week or so. My sleep is a little disrupted, but it has been for years, so I don't think it's any different on Anastrozole. My thumbs sometimes get a little sore, and my fingers sometimes fall asleep. Slightly annoying, but not terrible.
For me, the anticipation and dread were way worse than the reality.
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I would wait, especially because you are going to be in a place where it may be hard to get in touch with MO.
My primary has watched me for years as my dad was insalin dependent diabetic in his later years. He said taking metformin was my choice at this point. My numbers were a little high but not bad. I decided to take it for two reasons - there is some evidence that it helps with the joint pain and based on my husband's experience, I hoped it would help with weight control. Both have proven to be true for me. I admit that I haven't been as diet conscious as many of you although I am a few pounds lighter than when I left WW four years ago.
I agree that many of us post here because of complications but there is a thread for those doing well on AI's. Check it out. The only SE I can complain about is thinning hair (and my stylist reminds we that my mother was practically bald when she died so AI's may just be excellerating the inevitable.) My goal is just to be known as "the lady with the hat."
Sorry about the spelling errors - my spell check isn't helping me tonight.
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I started Anastrozole on October 26th. To date the SEs include, achy joints, especially when I first start moving and weight gain. I decided that I would start walking in 2019 to see if that helped. In January my steps totaled 152,000, last month over 200,000. Walking has helped so much! My joints stil hurt but once I get moving everything is fine - and I lost 6 pounds in those 2 months.
Not sure if I will last the 10 years but for now I'm good.
Good luck to all of us!
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WorrythePooh - my MO had me start the AI about 1.5 months out from my last rad. She wanted my skin all healed up before I started anything, and she had me start by taking a pill every other day for 6 weeks. So my 2 cents is to wait until you're back from vacation. Best wishes to you!
I post on both forums - here & doing well. Because I have side effects I look for others who have the same & might have a trick up their sleeve to share with me. But truly I don't have it as bad as some, but maybe worse than others. I think early on when I started taking it was much worse than it is now. A full body, mind & soul adjustment to blocking estrogen. I'll get through it, hoping all of us can.
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if your arm is numb talk to your dr and get a referral for PT
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I can’t see to find any other thread, what is the name of the doing well topic
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MACTAZ,
Here’s the thread you’re asking about.
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Thanks Janet
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Good for you, Phoenix. I've been doing less the last few months because of some gastric junk and the weather but I have found that 7500 steps (or 50,000 a week) is a reasonable goal for me. Even not meeting those goals recently, I am down a few pounds which I hope will continue as spring really arrives. I know I feel better when I exercise.
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Thanks so much for the advice CindyNY, Taco1946 and Hikinglady, I'm so glad this forum exists as it really helps to ask people who are going through or gone through the same. I have decided to wait a few weeks to start, so I will feel less worried in the lead up to going overseas.
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I'm taking my first Anastrozole pill today. Not happy about it but I'm going to try to surround myself with a positive force field to keep the worst of the SE's at bay. LOL!
Question: Leading up to this day, I've seen references throughout the different forums on taking the pills with/without food. Unfortunatey, I don't remember all of what I saw at the time and as I said, the info was spread throughout the forums. I would appreciate any input on what works best for you. Thanks in advance.
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