For Arimidex (Anastrozole) users, new, past, and ongoing
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Hello. New here. Has anyone had issues with diabetes while taking Anastrazole?
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@ Dulcea
Women that are high risk for recurrence are often recommended to stay on AI for ten years and some choose to stay indefinitely as long as their bone health is not suffering too much and they have no significant side effects.
I am in my 8th year with the intention to stay on Anastrozole for as long as possible. My MO’s current plan is 10 years at least with a switch to tamoxifen as an option if the bones don’t do well.
So far, after the first 4-5 months of adjustment I have minimal side effects that are not worth mentioning here. No joint pain, hot fleshes, mood swings, weight gain, high cholesterol or other significant side effects.
I was on Prolia for four years and it restored bone density to a better level than before I started AI. It was stopped last year and we will see how my bones will do in a year or two and then decide.
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Helen613, I went off of anastrozole early this year due to multiple side effects, and increased glucose was one of them. I went on Aromasin afterwards, but am still having the same problems. I think any of the AI's can exacerbate pre-existing conditions. I was in the pre-diabetic range before, but have since developed diabetes.
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Thank you muska. I thought it was just typically a 5 year prescription. That makes sense about recurrence risk.
Whatjusthappened - I also was prediabetic prior to starting arimidex. Since it can also increase cholesterol, my PCP recommended fish oil to head that off. After doing some research, I started taking krill oil (a type of fish oil) and low and behold, my fasting and post meal blood sugars are amazing! I have not seen them that low in years. There are many other benefits to krill oil. I would suggest looking into it and checking with your doctors of course.
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Dulcea, I have actually been taking fish oil for years, and I do think it's helped keep things in check. I have not tried krill oil. It looks like there are conflicting reports about whether or not krill oil is absorbed more easily than fish oil, but I'll have to look into it some more. I'm also looking into berberine, which is supposed to help glucose, cholesterol, and blood pressure.
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Whatjusthappened-- my initial research shows that berberine looks pretty good. I will have to dig deeper on that. It really has a lot of other health benefits to it as well. Now if it would just keep my hair from falling out it would address all my side effects of arimidex.
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Hi, newbie here. I'm 54 years old and overweight with no family history of breast cancer. I was diagnosed with Grade 2 invasive ductal carcinoma in February of this year. They caught the small mass on a routine mammogram. I had a lumpectomy and 20 days of radiation as recommended by my surgeon and oncologist and finished radiation 2 weeks ago. Finally starting to feel normal again and I asked for guidance on weight loss and diet, which they sort of glossed over and didn't give me very specific recommendations. Then they dumped the anastrazole into my lap like an afterthought without a word about potential side effects. Fortunately, I waited until the weekend to take the drug so that if it made me tired or something, I wouldn't have to miss work. The pill hit me like a runaway train. Nausea, gastrointestinal problems, severe headache, weakness, and severe depression. I couldn't stop crying! I took it for a few days and stopped. I couldn't do it. I went back to the oncologist, told her about the side effects, asked again for guidance about healthy eating and exercising, and was only given a prescription for letrozole. I'm willing to try again with a different drug, but I'm also terrified. Has anyone experienced a similar array of nasty side effects, and what did you do? I absolutely have to lose weight for health reasons (my BMI is 34) and I'm concerned that the side effects will inhibit my ability to do this. I'm a single mom with 2 kids in college and not working is completely out of the question. Feeling very overwhelmed right now.
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yvette, I'm so sorry the Arimidex has been so hard on you! It sounds like your MO wants to treat the cancer and nothing else. You are wanting some advice on diet and healthy living. If your MO won't guide you with that, would your PCP be able to help you? Your concerns are valid and you deserve to be heard, not just brushed off.
The Arimidex MIGHT get easier - there are some who have taken it for a longer period, and have adjusted to it. Others don't and if you are one who doesn't react well to it, you should not have to suffer a bunch a side effects.
Anyway, I know others will chime in here. This is a wonderful support group/
(((hugs)))
Carol
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yvetteb: The side effects you just described are not insignificant and if and when I have to start AI drugs and have the same issues I doubt I can stay on them. I had two breast cancer friends who had the same side effects as you did, quit each AI drug and is now trying Tamoxifen. I am scared to death of feeling worse for the rest of my life, or at least 5 years.
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I know! My first experience was devastating. Anastrozole is a no-go for me. I'm trying Letrozole next. I don't know how I'm going to do it. I might try taking it every other day or cutting the pills in half initially until my body adjusts to the drug.
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Thank you!
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Yikes! I'm in the pre-diabetic stage as well and failed an attempt to take Anastrozole due to multiple awful side effects. Next up is Letrozole. Some days I feel like telling my doctors that I didn't sign up for this! They made it sound like I would be done after surgery and radiation. Now another 5 years of med hell? I've got to change my negative outlook about it - it just is what it is.
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Yevetteb, I hear what you’re saying! I had several of the same SE when I started anastrozole. After six months I started seeing an Integrative Dr. she recommended several supplements and we agreed to try acupuncture for several of the side effects. I encourage you to see if your cancer center offers Integrative or Functional medical services. I chose integrative verses more prescription meds. I’m doing much better and have lost some weight! Keeping you in my thoughts, all the best to you!
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That's great! I'll have to look into it. For now, they gave me a prescription to try letrozole and I took 1/2 tablet this morning. So far minimal side effects except feeling a little dizzy and spaced out. I'm going to do the 1/2 dose for at least a couple of weeks so that my body gets used to the medication and I hopefully won't have the disastrous effects that I had from anastrozole!
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yvette, Yes, I've been on a roller coaster of misery for 13 months now. I've tried 4 AIs. I think some of the side effects you mentioned might go away like nausea and gi issues, but others could get worse, like arm and leg pain, agitation, insomnia. I also am on letrozole now. There have been so much going on with me, it's hard to nail down cause and effect. I think the arm and leg pains were much worse on arimidex, my arms went numb every night, but it could have also gotten better because I had DIEP flap surgery and stopped my statins when starting letrozole. And I was on lupron when I was on aromosin. They all end up making me agitated and I can't get any REM sleep, even on a sleeping pill. I'm on the verge of giving up and switching to tamoxifen. Note, I read on this site and heard from my oncologist, for AIs you should take every other day based on the half life of the pill, do not split the pill it might not be effective. Tamoxifen users can split the pill. Does it really matter? I don't know. I have been taking it every other day. But still doesn't really help. Still miserable.
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yvetteb Sending you huge compassion about these challenges you describe. YES, I felt icky for 6 weeks on Anastrozole and powered through, because my oncologist predicted (from his long experience) that most of his patients felt okay after an initial time period. Sure enough, at about 3 months, I really settled into feeling pretty steadily okay. I started in November 2018, so it will be 3 years this fall. I'm doing fine. Some joint pain, and everything's better if I exercise 30-60 min a day, drink a lot of water, etc. He specifically said to try to wait 3 months before switching or quitting, because there's quite an adjustment period.
RE: weight loss
As people above on this thread have pointed out, the oncologist is focused on treating cancer, and the good ideas above about where to get other help and support sound really great.
My own journey included learning about The Zone Diet, at the suggestion of two doctors. It's a way to focus on making good nutritional choices to support immune health, AND supports keeping blood sugar even. I switched to eating more whole grains, limiting "simple carbs," and I also started eating dinner earlier and breakfast later. I've lost 15 pounds in 10 months. I definitely need to lose another 15---I'm not any longer Obese, but I'm still Overweight as far as BMI. This is a really slow but steady weight loss. I am restricting WHEN I eat. I leave 13 hours between dinner and breakfast. (a version of "intermittent fasting," and this might have made the most difference!) And, I am careful about portion control, and I just don't waste calories on 'empty' calorie things. I eat protein every time I eat, and I also have little treats every week or two, like a martini or white bread or pasta or a small dessert once in a great while, but mostly, I try to limit simple carbs and avoid empty calories most of the time. (Booze, soda, sweets, chips, etc.) So, I eat healthy food, a bit less, NO FOOD for 13 hours overnight is what has worked for me to maintain weight and even lose a bit. I eat 3-5 times a day. A between-meal snack is always protein-heavy + complex carb: boiled egg, nuts, cheese + fruit, etc.
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I periodically come here to help folks understand exactly how aromatase inhibitors work. I will use Arimidex as an example. The absorption is linear over time over a dosage range of 1-20mg. That means, for every ...mg absorbed, a similar amount is found in the blood. These drugs are NOT active in & of themselves. They work by reversibly binding to the aromatase enzyme through competitive inhibition and blocks the conversion of androgen to estrogen in extra- gonadal tissues. The maximal suppression takes place in 3-4 days of a minimum of 1mg/day dosing. The elimination half-life is about 2 days, which means it will take about 2 weeks to have the circulating Arimidex decrease to almost nothing. That does not mean the physiologic effects will follow. Since the drug itself does not have activity, rather it is the suppression of the enzyme that confers activity, it will take more time to have the enzyme activity return to normal after discontinuation. The goal is to have a steady inhibition of conversion of androgen to estrogen. Estrogen deprivation is generally thought to be the cause of arthralgias (muscle aches) and insomnia.
All this is to say, taking the drug every other day does not change what the drug does at all. The enzyme is still suppressed. So, if your side effects are because of lack of estrogen (vaginal & skin dryness, hot flashes, osteopenia, insomnia, headache) you can not attribute any good nor bad side effects to changing the dosing schedule from once daily to every other day. Now, if you reduce the dose to 0.5mg, you will not completely suppress the enzyme so you might have some estrogen-type side effects. If you have side effects such as skin lesions, difficulty breathing, swelling, abnormal liver function tests - those might reflect an allergic type, cell mediated immunity reaction in which case the drug should be discontinued & you should contact your doctor.
If you have questions beyond this, DM me. I wish you all the best of luck.
Jane
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yvette - I had joint stiffness almost immediately with generic anastrozole, but not other SEs. Brand name Arimidex seemed to affect me less. You can get it directly from this pharmacy $2/day which is a lot less than what insurance charges. DR needs to fax in the Rx https://www.eaglepharmacy.com/
Lifestyle changes are hard, and the changes you make need to be sustainable, not radical quick fixes. If there is a YMCA near you they might have classes in eating/nutrition, in addition to all kinds classes (yoga etc) and gym equipment. of Hydration is key, water, not sugary drinks. The mediterranean diet emphasizes low meat, lots of vegies, low sugar. If you take up exercises find something you like and will stick with. For nutrition/life style, check out https://foodrevolution.org/
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I have also started to take anastrozole (arimidex) in May and so far I have not had any side effects. I was so scared because of all the terrible SE people were experiencing. After I had a second opinion with another oncologist who gave me the same recommendation "try it for 3 months and see what happens" I did and so far so good. I am almost 74 and I think it is easier because at that age you have very little estrogen left anyway. It also depends on how healthy you are (besides having had cancer).
I had stage 1 cancer in my right breast, got a mastectomy in March 2021 and didn't have to suffer through radiation and chemo.
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well I have been extremely fortunate with brand name Arrrrahimidex via Eagle pharmacy. Levothyroxine, 0.25 mg of Lorezapam(very sloow redux regimen), vitamin D3, multi vitamin. Liver is OK cholesterol mildly elevated. Water water with walk walk no bone stretching meds. Been taking about 45months now and I cannot afford to think about until 72months pass.
Strangely my onco only gave me 90 day supply this time. Check up in about 2 wks and I have a feeling she might recommend Letrozole which I am more than open to. I even found out I may be able to make Novartis to subsidize the cost of Femara. My first choice is Femara just maybe try generic for a couple of months. If not going back to the proven Arimidex.
Anyone else switched to Femara with little issue possible from Arimidex?
Thank you for your help or advice.
Mimi
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Castigame - I made the switch and have done better on letrozole. I still have some aches and and occasional trigger finger/thumb. The worse SE for me has been depression and insomnia. I am taking adivan to help with this. Feeling much better.
Annie
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Hello there, i have this rash on my cancer breast, they did a biopsy and turned out to be an allergic reaction to a medicine. The only med I can think of is Anastrozole and the J&J vaccine. I also have another brown dry skin patch like around my armpit that is growing and multiplying. Anybody has any skin issues with Anastrozole
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Anx789- sorry about your reaction and rash. I’ve had no rash issues from Anastrozole. During radiation I had a patch go crazy, and had a few brownish flat spots show up in radiated area. All has returned to normal. Hoping yours clears up too.
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Anx789 - no alergic reaction, just the dam SEs. It seems like they should be able to figure out which drug is causing it. Good news that your biopsy was negative. I was not so lucky. I did get a "rash" after 12 months when on Ibrance/Arimidex, biopsy showed that it had become metastatic.
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Hi all, I’m finishing up RADS on 8/25 and the. On to 5 years of Anastrozole and Lupron starting. 8/30
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Hi there,
Hope everyone is well. I am 1 year post partial mastectomy with 20 sessions of radiation. As I am pre-menopausal, my MO recommended tamoxifen. It took me awhile to get on board with it and started taking it on 1/1/21. I decided on 10 mg instead of the recommended 20 mg. Started off okay but it immediately messed with my periods and the insomnia and hot flashes began.
Then in early June, I ended up in the ER….diagnosis of 2 DVT's in my right leg and a small PE in the lower lobe of my right lung. Scary to say the least. I couldn't believe it and frankly it scared me more than the actual breast cancer. My MO told me to stop taking the tamoxifen. Since then my periods are normal again and I am sleeping much better. I am now taking Eliquis and will continue to do so for a few months.
My MO is now recommending monthly Lupron shots with Arimidex. Given what happened with the tamoxifen I am hesitant to do this now. All of the side effects seem so scary. I already have osteopenia so I am concerned about bone loss and joint pain. I certainly do not want metastatic breast cancer but I feel paralyzed by fear and uncertainty.
Would appreciate hearing from those taking the shots and an AI. Thanks so much.
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Wow, all these drugs are ever so scary. Is tamoxifen the only hormone drug that is more associated with DVT? Seems that MO's keep switching patients around on the other AI drugs as well but those have different SE. So undecided myself as to starting any of these.
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I think Tamoxifen is notorious for DVTs. The other AIs given to post-menopausal come with their own set of SEs but usually DVTs is not one of them. Glad you got prompt medical treatment as they can be scary.
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Hi Gina,
I’m 57 and since I was not considered in menopause prior to my diagnosis in 2019 (even after chemo, single mastectomy and radiation), I get a zoladex shot every three months and take anastrozole (since 1/20). My side effects have been minimal. I really don’t have any problems after the zoladex shot, and the AI gives me some aches and pains, but I stay active to fight them and I’m doing okay. Hope it helps.
Lauren
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Thank you Lauren. Glad to hear you have tolerated both meds without much incidence. I have an appointment with my MO on Sept. 2nd and will hopefully be closer to a decision.
Gin
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