For Arimidex (Anastrozole) users, new, past, and ongoing
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yeah, my insert said that too. He is a specialist in osteoporosis, and said that sometimes it doesn't make it all the way to the stomach in the first thirty minutes and cause it is once a week only it is better to wait to make sure it is absorbed. I Just want the best chance possible of it working theway it should.
Hugs!
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Bennybear & Pontiac Peg - definitely I'll wait a minimum of 1/2 hour, but because I picked Sunday and I'll be hanging with the newspaper I could easily go an hour plus. Thank you both!
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So, I just finished radiation a week ago and met with my MO today. The plan is to start Zoladex and Arimidex in a week from today and take Arimidex for 10 years. She suggested taking calcium supplements and vitamin D supplements along with the medication. She also said if I have joint issues to try tart cherry extract. I will probably have an oophorectomy in the near future.
I've read that some people are taking vitamin D3, not vitamin D. What is the difference between the two and is one better for this than the other? Also, has anyone had issues with kidney stones when taking calcium supplements long-term?
I'm very leery about taking these medications because of the SEs. My MO said some people have a lot of SEs and she has had people that have had no SEs on them. I've read through some of this thread but at over 560 pages, that's a lot to read through. Are there general things I should know or do? Better times of the day to take it? Any other helpful supplements to take to help SEs?
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Some people have barely any side effects from Arimidex and other Aromatase Inhibitors. The side effects are usually due to reduced estrogen, and some people do better on different brands, so sometimes the 'fillers' in the pills behave differently in different people.
Some side effects become easier or go away with time. Others show up after a year or two. It just depends, and everyone's different.
I had already-diagnosed osteopenia when I got cancer, so I'm getting Zometa in an infusion, every 6 months. It makes me feel tired and achey the next day, but for just one day. No other problems. Should keep my bones protected (because AI's typically do thin bones), is the plan, and it also offers some protection against bone mets.
I've learned that bone HEALING takes longer while on a bisphosphonate, such as Zometa. However, this medication should also protect against fractures.
I've been on Anastrozole for 1 year. The first 2-3 months, I noticed a lot of new stiffness and achey joints. That all got a bit better over time. I was super tired for 2 weeks, and that went away. Because of the achey joints, I committed to 1 hour of exercise every day, working all muscles, and I'm sure that helps my joints be more comfortable. I have weak thumb joints, and 'warm' flashes, but not very bothersome. I think that my arthritis which I already had (hips, knees, hands) has gotten a little worse. Not horrible, just a bit worse, but it doesn't feel like a deal breaker.
My MO sat me down to discuss this decision with a lot of statistics and information. In my case, with my specific Path. report and all the rest, the benefits (reduction in recurrence risk, and recurrence would mean metastases and Stage 4), are very important to my chances for having a good outcome. My outcome statistics are hugely better if I stay on this medication, so I do plan to.
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HikingLady - Thanks for the information! My MO was definitely willing to try different medications to try and keep me on them as long as possible, so I will also keep in mind the information about different generic brands.
My MO doesn't normally do a bone density scan before starting to take the drugs. She usually waits until 6 months into it but was willing to do it after 2 months when I meet with her for the first time after starting the meds. I've never had one done and wanted it as a baseline for the future.
I exercise now 30 minutes a day but have asked for help from my SIL who sets up workout routines and teaches fitness classes for a living. She also was a strength and conditioning coach for a college softball team so she knows her stuff and is giving me some different types of exercises to do to help combat the SEs. I'm hoping they will help, especially if I start them right away. I'm trying to do what I can.
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D3 is something we don’t get from sunlight. If you had a blood draw for it, chances are real good you’d be deficient. I was, at 17. Even in Florida year round. Low end of normal is 30 The calcium is to help your bones, the AIs tend to be hard on them. My MO wanted me on 1200 mg daily.
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I was taking Chondrodiun and Glocosimine (or something spelled sort of like that) before BC and have continued. Also Vitiam D with calcium. Had my first dexa scan at almost 71. MO couldn't believe I had continued to convince my internist I didn't want one. But to everyone's surprise, she said I had the bones of a 30 year old. Joints aren't good but bones are. Was glad to read that AI's may slow healing. I have had much more pain from my knee replacement in July than I anticipated. Think I'll wait to get the other one done after AI's.
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Mocame, my OC has me on D3 and alpha lipoic acid supplants to help with neuropathy I got during chemo. I have been on it for 6 months, I’m not sure if it is helping but some days the numbness does seem to be better.
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Thank you for all the replies and information. I will definitely check into these supplements.
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Just some other BCO stories when starting an AI. Some of us ramped up—took it every other day for a few weeks, and that seems to help the SEs a bit. Some women have reported sleep issues, so many women take it early in the day. Probably with food is better. I don’t eat breakfast so I take mine with lunch.
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Sorry to hear about the loss of so many friends in such a short time period. AIs ...... SEs and how successful they are seems to vary with the individual / with the cancer. In a post on the main breastcancer.org, some suggest hormonal therapy might only delay rather than prevent recurrence / new cancers. But I guess that is better than nothing. But I think DRs need to watch the language they use with patients. "Cure" ? Sometimes I want to reach over an strangle them when they start talking about 5 year survival rate. What does that really mean? Not much. The only SE I noticed with Tamoxifen during the 5 years I took it, were occasional cramps in the calf. With a generic AI the second occurrence, joint stiffness and trigger finger noticed almost immediately. With the 3rd occurrence I am taking Ibrance and brand name Arimidex. With Ibrance, fatigue and dry itchy nasal (cause of sneezing?). Some joint stiffness and trigger finger has returned with the Arimidex, but so far, not as bad as with generic. Have been taking the combo for almost 2 months.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. 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 sentinel 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 due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
7/19/2019 - swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
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mocame, good information from everybody. Sounds like you are getting ready, good for you! Hopefully and maybe you won't have any problems.
I might add I take two kinds of magnesium for leg cramps, and maybe you won't have those, not everyone does. I started in April and didn't have any side effects for about 60 days, and then it got awful, but I finally have figured out how to do the magnesium, and I also take name-brand Arimidex from the CVS pharmacy for the GoodRX price. See what works for you, sounds like you have a good plan.
Exercise helps too.
I've gotten better, so try to remember IF you start having problems, it can get better. Someone once mentioned how lucky we are that we have this pill available to us. I try to remember that on days I struggle. Best wishes to you.
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Hello! I would like to ask all AI users if there are emotional side effects (like depression or anxiety). I am taking tamoxifen and it makes me very anxious and depresses me too much. I think I could deal with joint pain better than depression ... Chemo put me on menopause so I'm a candidate for AI. Any thoughts, advices? Thank you!
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I had severe depression with Tamoxifen at first. It did get better, but I had to switch to an AI after a blood clot. I was easy to cry at first with Anastrozole, but not depressed. My feet hurt upon walking in the morning, but even that has gone away. Overall achiness and brain fog are my consistent side effects, but not so bad as to quit. I would definitely try an AI if I were you.0
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I should add that I had my ovaries out, as well. That probably affected my emotions at first. Now, I am fairly even keeled.0
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MissouriCatLady - Thank you for the information. I will definitely keep Magnesium in mind. Did your MO recommend that or from the threads? It amazes me how everybody reacts differently to these drugs. Some experience SEs right away, some after months, and some never experience them. I guess that is what makes taking these meds so scary...you just don't know what you personally will experience.
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Mocame, my doctor talked to me about it. He recommended tonic water too, which has quinine in it, and that helps, only I think I need gin in it to tolerate it, nasty stuff. Sleeping with a bar of Irish Spring helps with leg cramps too (yes, I sound like a nut).
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Euphoriaa, I started anastrozole in Feb and about 4 months later started having the blues, which was probably depression. My OC had me stop taking my little pill for 3 weeks and then I restarted it. I’m now beyond four months after I restarted and am doing fine. In fact, I was having a lot of aches in my joints, even with exercise, and now it is much better. I think it just took my body some time to adjust but I’m feeling really good these days.
For leg cramps my OC suggested 2-4 ounces of tonic water before bed. It worked for me but I’m not having those issues anymore either.
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Mactaz, I'm really happy to hear that!! That makes my day! So grateful things are better.
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Re: depression.....Euphoriaa So sorry about the depression- it's a big deal---needs to be addressed, for sure. my MO was extremely up front about the fact that all these difficult side effects that people mention, including depression, can absolutely happen. He said that no matter what comes up, please let him know. He wants to help me manage staying on the AI, and he specifically said that sometimes depression can be treated and managed, and so can all the other things that come up, so for the long game, please keep in touch with him so he can help me manage whatever I need to do to stay on the AI. I have not had depression, but I've read threads here that mention it, and I've seen people's stories about solutions, such as various anti-depressant meds, and also Gabapentin, which have helped. Sending good wishes to you for a solution to this.
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Euophoriaa, I apologize, I jumped right past your post. HikingLady is offering you excellent advice. I have heard Effexor used for this before. I also send you best wishes, please ask for help to find this solution.
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Thanks to everyone for the tips! My MO suggested starting with tamoxifen and then moving on to an AI, but I will discuss it on my next visit. I don't want to take antidepressants never again, I hate feeling like a zombie without emotions, I just want peace, even with joint pain. ❤
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MissouriCatLady, tonic water? I have had that before so I have no idea what that tastes likes but doesn't sound great. Is Irish Spring the only soap that helps or are there other ones too? Thank you for the helpful information!
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Missouri is right, tonic water by itself is NASTY stuff. It really needs some gin to get it down. My cardiologist suggested a juice glass full daily for leg cramps. But I can't do alcohol anymore in any variety. I picked up some magnesium gummies at Walmart and for 4 nights I haven't had the crampy legs.
I've also heard Ivory soap between the sheets. Is that stuff still made??
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I actually enjoy the taste of tonic water, no gin added. I guess I have strange tastes. :
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Hi all. It's been a while since I've posted, but i had a follow up with my MO and we decided that I was going to go off anastrozole. I have been having tachycardia and chest pain which was especially bad during the many hot flashes I was having per day. Pretty bad hip pain as well, but that could also be from the Prolia. After a month vacation from AI's I'm going to slowly start on Femara and see how that goes. Had anyone else had luck switching? I was prepared to give up the AI's all together, but figured I had better at least try everything first. For now I'm looking forward to a break.
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Whatjusthappened, I think the break helped Mactaz, so it might also help you. Good for you for not giving up!
Mactaz, I did get used to the tonic water okay, but it quit working. Mocame, I have not done a lot of research on the Irish Spring, not sure if other soaps do the same, I just bought that brand. Yes, they still make Ivory soap.
Spookie, I didn't know they had gummy magnesium! Hallelujah! Going to try that, the pills are so dang big!
Euphoriaa - From what I've read, the best thing we can do besides vitamins and supplements for joint pain is move ( exercise ). We have a treadmill and exercise bike in the garage now that we bought used. I try to walk every day, although I am lazy some days, and I notice it more those days.
I do not know a whole lot about supplements really, but I read to take them at different times of the day for better absorption, instead of taking them all at the same time. Not sure if that is true or not. I did buy a bottle of magnesium glycinate liquid, and you can also buy magnesium as a powder and mix with water. I am going to try those gummies though! Also, if you get glucosamine/chondroitin, get it with MSM, I read that is good for joint pain as well, and they make it with that in it.
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If you are diabetic watch the glucosamine supplements. Can jack your readings up. There is a warning on the label.
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I did not know that, Spookie, thank you.
I like adding flowers and obituaries to Find a Grave, my husband thinks it is morbid, but I enjoy it. I put a note on there about having your 3D mammogram on a regular basis, and had a lady send a note saying she too is a breast cancer survivor. I just wanted you to know that I look at all of you as my sisters. This bond we have is like no other bond I have had with anyone else. You don't really understand what all it takes from you until you have been down the road. It changed my life. Spookie, I can run across something you have said years ago that has so much meaning to me. I may be having a sentimental day, with the holidays coming, and it makes me think of my mother who has been gone many years. Just sending everyone a hug today, and letting you know I care about you. Thank you, Lisa
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I was not much of a supplement taker pre-BC but have quite the laundry list now. Re: magnesium, I was prone to leg cramps before and started taking magnesium several months ago and really did notice a difference. Re: switching AIs, I started a thread that didn't get much response--my MO suggested I try Exemestane (I was on Anastrozole for about a year) because I'm still pissy about my fatigue level. I can't say I've noticed much difference, either good or bad. I know some women tolerate one AI better than the others, but I do think most of the SEs have to do with the reduced estrogen. Best of luck, Whatjusthappened. I hope the break helps too!
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