For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Thank you all for the good wishes. I switched from Arimidex to Femara about 10 months ago. My experience on Arimidex was a bit different as I had very tolerable se's for over 2 years. As I approached year 3 the joint pain and stiffness got quite bad. I switched to Femara and so far, so good. Yes, I still have joint pain and stiffness, but I manage with OTC pain meds and I move. Yup, for me, moving is key. If I am sedentary, I stiffen up. Fortunately, my first graders, my granddaughter and my dogs make sure I never sit for long. In any event, being active is a good thing. (But, if Femara fails me, I'd give Arimidex another try
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exbrnxgrl I switched from Anastrozole to Exemestane (Aromasin) I'm doing great. My pains all went away. You might consider that next.
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Thanks for your comments, ruthbru, PontiacPeggy, Iago, Ohiofan and 208Sandy! Yes, I would actually walk there and back to get the news that I did - I am still so relieved and happy
Big hugs to you all!0 -
SoLinda, we're so happy for you! Good news is wonderful!!!
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Hi Gals, I've seen this thread on the forum list for a long time ... just never read before. I am so glad I checked it out today.
Ruth ... I agree, most people don't have incapacitating side effects from Arimidex. But, I did. There is no way I could live like that for five years. Taking Arimidex would have given me a 50% benefit as well. However, in my case, the numbers are really deceiving. My recurrence risk in the first five years was about 8% with no anti-hormonal. Taking Arimidex would have lowered that number to about 4%. So my 50% benefit just wasn't enough to warrant being that sick for five years.
I also suffer from a major depressive disorder that predates my cancer diagnosis. For me, it was every bit as important to manage my depression as it was to treat my cancer. It took a while for me to find a doctor who understood my concerns and the debilitating effects of taking Arimidex. In this instance, I had to weigh treating my depression against taking the medication and treatment for cancer. I've been cancer-free for 8 years this month. I didn't make the decision quickly or easily to not take an AI or Tamoxifen.
hugs
Bren
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Bren, so glad that you're cancer-free! What an awful decision you had to make. I'm just glad it worked out the right way! HUGS!!!
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Hi, just rec'd my first of many bottles of Anastrozole.....happy to see they are very small because I hate taking pills but started taking the D3 and Calcium pills a few weeks ago. So now I will add this to my xanax and lipitor daily. Gosh I hope this gives me no SE's as I look thru everyones posts it is kind of scary but so is cancer so I will start tonight with my other pills unless anyone says I should take them at a different time. Heck I don't know I normally take my pills at night so I hope I can take this one at night too. This is such a wonderful avenue of information that you sure can't get anyplace else! Thanks to all and good luck on our journey!
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Mary, welcome! I take mine in the morning. One person who posted here months ago mentioned that sometimes it can cause insomnia. Since I already had help in that department (DH has Parkinson's and was getting me up 4-6 times per night), I decided that morning would work well for me. And so far it has. I must say I haven't seen any hint of insomnia either. I can take a nap at the drop of a hat. No SEs for me thus far. HUGS!!!
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Thanks Peggy, my husband also had parkinson's along with many other things so I do know what you go thru daily. Although I would love to have him back he passed away 11/7/14 then 3 weeks later I rec'd the news of breast cancer. I have been very blessed with having 3 kids to help me and walk with me thru this new phase of really making a new life. I'm gonna try them at night but will remember that if I can't sleep to maybe take them in the morning. Bless you and hope everything is well with you.
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Mary - so sorry for all that you've been through. You have really been through a lot and I'm glad you have your children for support.
I've not had to take statins yet so that wouldn't have caused the leg cramps. I'm not even sure if it is a know side effect but it the increased cramps/spasms sure did coincide with the new med.
I'm going to see what other meds I can take instead. I would like to know the % of benefit I would get from an AI. You would think I would've asked when my MO told me that I needed to switch but I wasn't expecting the change and didn't really know that much about the drug class until I came home to do more research.
I would be interested to know the true benefit and see if it outweighs the decline in quality of life (yes, I know it's only been a week and a half but it's been a doozie that I do not want to keep repeating).
~Lori
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Mary, how devastating! I can't imagine how you coped. My heart goes out to you. DH had a cancerous kidney removed in September, got pneumonia, while I was doing my rads. By the time he was in rehab, I realized I could no longer care for him at home. I discovered that (amazingly) it looks like we could qualify for Medicaid to pay for a nursing home. With 2 months left of Medicare rehab he went to a nursing home. That ran out in January and we're still waiting to hear on our application. As you know, caring for a Parkinson's patient is 24/7 with no break. I couldn't leave him. I had no help until the boys came home to care for him while I had my lumpy. That opened their eyes. They were onboard with putting him in a nursing home.
It's so hard to adjust to all the new things in our lives. You're having to re-make everything while coping with his loss. My heart goes out to you. HUGS!!!!
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Peggy my heart goes out to you so much! Yes it was a full time job, but for me I was lucky enough to quit my full time job as it ended up my husbands was all related to Agent Orange from the Viet Nam area. So financially we would be ok and I would have health care the rest of my life. Thank the Lord! I'm so glad your boys came home to help you make the decision. My kids were trying to get me to see that but by then I had already retired from my work (although I just turned 60 this year). And to be honest with this BC discovery I certainly couldn't do both. So bless my husband is in the best of hands and we will meet again on another day. It is time to take care of ourselves now and I know how hard it is but it sounds like you have some help with your boys and will pray that the application process goes smoothly for you. It is just a different type of worry and worry is what we don't need at this point. Hang in there you are such a positive person on the board, thanks for always being here. Where are you getting your care from? I went to U of M as my son insisted on it as here in Kalamazoo it was always wait, wait and wait.
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Oh, Mary. I hadn't even looked where you were. #2 son graduated from Western (as did his lovely wife). Agent Orange did a number on so many of our Vietnam vets. It's tragic. Thank heavens you had that to fall back on. I was laid off 4 years ago, then DH had a heart attack and that exacerbated his Parkinson's. Never got back to work. (I turn 70 this summer! How'd that happen?) I had about 4 weeks after my surgery where I had no help before DH went in for his surgery. By the time he went in the hospital I couldn't have lasted one more day. I was totally strung out and stressed. We hired an elder law firm to do the Medicaid application. He claims he gets all his apps approved. Hope so!
Thank you for the kind words. I really am a positive person. I have had all my care at St Joseph Hospital in Pontiac. It's REALLY close. BS, MO and RO are all on the campus of the hospital. Worked out nicely when DH was hospitalized because I'd visit him, run over for my rads and come right back to be with him. Rather wastefully, I drove the quarter mile to the radiology center and back. I couldn't face walking it - too exhausted. I take it you were pleased with your care at U of M. I'm glad you didn't have to wait. That's so hard. Do you have local oncologists or do you travel to Ann Arbor regularly? (Must have been fun this winter). Are your kids close by? Mine are both out West
HUGS and more HUGS!0 -
Wow Peggy, I sure have no idea how you did this and that together! I have learned that God really works in mysterious ways for sure. You made it!! And prayers for you and your DH. I thought the boys were closer to you, sorry. Yes all of my kids, 2 sons and 1 daughter all live here finally. My daughter did live in Texas which was always hard as she had a terrible short marriage there but does have a wonderful son from it. I have 5 grandkids total! Each one is such a blessing. My oldest grandson just came home and is stationed out of Battle Creek for the Marine reserve. That has always freightened me and glad that he could not go active as Obama halted all enlistments (although that is what he wants to do). All 3 of my kids were in the service, daughter the longest 10 years in the Marines!
Yes U of M is wonderful, I go there for everything related to this BC. The drive is only a little over an hour so not bad at all. And my son (works at the post office) and my doctor filled out the paperwork for FMLA for him and he takes me to every appointment. I am very blessed with all of them. Now that things have calmed down for me, all I have to do is the pills, they decided it wasn't good for me to live alone so we went out and now I have a little puppy named Josie, she was born the day my husband passed and she is my angel. She has been another blessing to get me out of the house as you well know, it wasn't easy for years with my husband needing constant care and that is why I retired. But Josie and I are now on to our new life together, she keeps me up and moving because after years of sitting here taking care of Joe obviously made me very lazy!!! So now its time to get up and get moving again......a new life for now!!
Many more hugs to you! My thoughts and prayers are with you!
For me I don't have to go back to U of M for 2 more months to see them if everything goes well with these pills, fingers are crossed. I ended up not having chemo or radiation (my choice) with my onco score only being a 9 I am hoping I made the right decision.
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Thanks Lori for the support, gosh this is the place for that. I have been very blessed as we all are, lets just count up the blessings!!
I will get those leg cramps once in awhile, they are absolutely the worst! Good luck with that will be good to hear what they do for you.
Hugs and prayers to you!
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You ARE lucky that your children are close, Mary. I'm envious. I'd love to move out West and be near the boys. No grandkids. Like you, I've found much comfort in my little doggie and kittie (who just turned up diabetic and is on insulin shots). I think being without the pets is the hardest thing for hubby. Your doggie was obviously meant just for you being born on that oh so difficult day. You have wise kids! Glad your son can go with you to your appointments. That is helpful. I can understand why you opted out of chemo and and radiation. 9 is nice low score. New lives are hard to craft but also loaded with so many possibilities. You'll do just fine. HUGS!!!
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Yes, it must be hard for your hubby to not have the pets around. We couldn't have any more after our kitty passed away. She was very well trained and stayed out of Joe's pathway while he walked. We tried a puppy after kitty but he didn't work out as Joe tripped on him, so one of my technicians at work took him as he really loved him and I knew he would have a nice home.
You never know what tomorrow will bring so I am trying to look forward now, I am trying to stay positive and yes the puppy helps alot. Glad I have family close I wish you did also. Because with Joe's illnesses I could count friends on one hand, at first I had lots of friends always asking to help but as they say after a few months they are gone......they are busy with their own lives also. But it's ok!! I will get through this, my daughter always said I was so strong.........not sure about that you just do what you need to do.
Hang in there Peggy, I may need more advice from you if you don't mind. Lots of hugs to you also, wish I was closer to you. Funny I worked at ATT as a manager and it seemed liked we lived in Detroit for months in apartments working on those phone lines there....again at that time ATT was very spportive and let me bring Joe with me. As I look around, I just wish I could help anybody but not sure what I could do.
OK, took the pill now I'm ready to sleep the night away........have a good night
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Mary59G,
As you have no doubt already figured out from these boards, all of our doctors have different opinions on how things should be done. My MO said that Anastrozole might make me sleepy, so from the beginning (almost 10 months ago) I have taken it in the evening. My only SE has been mild hot flashes which I was already having so really, I don't even know if that can be considered a SE. Same with thinning hair: I was already dealing with it before BC. The Anastrozole definitely doesn't help, but my dermatologist and I are handling it. Anyway, I just wanted you to know that I'm doing well with the meds and I'm sure lots of others are too. Hopefully you'll be fine, and you deserve it after all you've been through. Come to think of it, we ALL deserve it!
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You can play around with the timing and see what works best for you. I took it in the morning because it made me a little hot flashy, which I could deal with fine during the day, but would have kept me up at night.
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Mary, DH also had some issues with our pets trying to trip him, especially kitty. But he wouldn't have dreamed of giving up the pets - we'd had them too long when falling became an issue.
We ALL have found an inner strength we didn't know we had. And you do do what you have to do. There's just no choice about it. How lucky you were with AT&T. My son is SoCal worked there years ago and they were supportive of him visiting his Navy wife when she was stationed in Japan. (He was in the Navy 4 years, and she just retired).
Any time you're over this way, let me know and we can meet someplace for lunch. I don't work so I'm quite flexible. That would be fun. Or we can meet halfway. Kzoo isn't that far.
Ruth made a valid point if you are having hot flashes - less troublesome to have them during the day. I was far from that I thought but it is possible I'm having extremely mild ones (which was what I had 25 years ago). Whatever, you'll do just fine. Good night. Hugs!
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Hi there! I'm new on this thread.
I'm Leah, mom to 10 kids. The oldest 5 are adults and on their own now. The youngest 5 are all at home. They all have Down syndrome. I just completed surgery #7 - ovaries removed. Had uterus/cervix removed when I was 28) and will have #8 the end of April (more recon)
I have had my bottle of Arimidex in my cabinet for a month now. My onco told me I could wait until after my surgery "when you're feeling back to normal." Well, I was going to start taking it this past Monday, but I just couldn't force myself to do it. I have been feeling so good, have lost 15 lbs. I just don't want to make myself feel like shit again. This anxiety reminds me of how I felt approaching each chemo treatment.
I have all kinds of excuses you know. Two of my kids are having surgery on April 7th and I need to be feeling decent for that. I'm having surgery the end of April and I need to be feeling decent for that. We're in the middle of a remodeling project and there is so much to do! That project is in preparation for my daughter's High school graduation. A party to plan, so much to do, that I need to be feeling good for. And on, and on, and on.
But, my risk of recurrence without the drug is somewhere between 25-30%. That seems so high to me. What I really need to do is stop reading how crappy everyone feels while taking this and just pop the dang pill myself. So, I'm setting the goal of Monday next week. That should be great fun with all my kids home on spring break, plus the extra (and very busy) little guy who is here as a foster respite until the 28th. Its so hard to jump off this cliff.
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Lori, you and I should talk. I have SE's from many things and from Arimidex they happened after the first dose.
Mary, OMG...I can't imagine how hard that must be for you - this dx after your support system passes on. At least your children are there and thank goodness!
We have no children, but Ray is facing a life without me and I feel so bad. We've been together since age 18 and were hoping to be one of those couples who made it to their 60th anniversary or beyond...but that won't happen now.
You are very strong in my eyes.
Peggy, I am one of those on Medicaid (Cali = Medi-Cal) and it's not fun. At times I've gotten surprisingly good care on it but mostly it's fight fight fight with them over everything. I'm so busy fighting, I'm not getting much care. You need ins approval for everything - I mean, even a CBC blood test has to go through the weeks long approval process. Private ins makes certain concessions for "normal medical tests." Medicaid does not. And "STAT" approvals - they claim it takes 2-3 days. Try 10. But that's better than the 20-30-45 days you can wait for a regular referral.
Nearly every procedure I've has has been delayed due to improper codes on the tests. My core needle biopsy (very first test) was refused THE DAY I arrived to have it done due to it being coded as a biopsy of the axilla when they wanted the code to be for a breast biopsy. Picking nits to me and it WAS of my axilla! I have no solid tumors in my breast. I am severely visually impaired. I have to get a person to take a day off work to get me there and then they have the nerve to cancel.
This is repeated over and over, and meanwhile, I wait...and wait...for them to work it out while the cancer keeps growing. That's how I've come a year with virtually no tx.
My MD wanted to send me to a breast surgeon. Ins sends me to a vascular surgeon but don't worry says his office - he can do breasts. When my MD found out who I got she said OMG don't go to him, he works for cheap and is a hack!
I did get in to City of Hope but I had to write letters and it took months and now that I'm there my onc says I am too difficult to treat with my SE's. So tomorrow I have to look for another onc and I can't choose. My ins picks and they pick whose cheap, not skilled. It'll be about 2 mos I bet til I get a new one and then another 3 weeks to get in. (and people wonder why I'm in the Alt section... Couldn't be much worse than nothing which is what I'm getting now).
You're looking for long-term care on it and I don't know much on that save for Medicaid will shove people into the worst places. I suggest being there every day and you should be okay. Watch the staff.
I hope you have a better experience than I am having with it.
BTW, I went to the ER 2 days ago for a number of things (asthma attack and anorexia NOT the eating disorder one). They tried to control the asthma w/o success and I came home. Today I was back at the ER for the anorexia. I want to eat but have no appetite. Tummy growls but there's a weird disconnect in my brain that won't allow me to feel hungry, or make food smell and taste good. And I'm mildly nauseous most times - no one knows why - nerves, cancer... no answers for me. But swallowing is starting to feel foreign and unpleasant. My Dx was - go home and eat. Nice.
Sorry - just wanted to tell you that I was back home again.
Take care all xx
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I'm new to this thread, but have been reading for a few days. Am almost at my 3-year PFC point (yea!). Saw my NP on Monday who is excited I'm doing well but (as with every 6-mo appointment) is encouraging me to reconsider using an AI. I started Tamoxifen at the end of chemo; I had a difficult reaction to Taxol and I think it carried over into Tami - I only lasted three months. My NP had me try Aromasin; I lasted two months. The SEs are debilitating (I'm a yogi and runner and was unable to walk at times). Tried Tamoxifen again, two months later gave up on everything. With a high Oncotype score and high Ki-67 she *really * wants me on something. I'm considering giving Arimidex a shot; am hoping that now that I feel more "normal" the SEs will be lessened, than trying right on the heels of chemo.
And I'm located right between Peggy and Mary, in lovely Jackson (originally from Ann Arbor, though)! Good morning ladies!
Nancy
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Noonrider, Welcome. Your journey has certainly been a hard one. Go ahead and give Arimidex a chance. Many of us have no problems with it and aren't likely to post here. Those with problems are more apt to post. I think (if that matters) that you need to try Arimidex. Just dive in and think positive. I'm betting you have plenty of practice looking for the good and finding it. Many hugs!
Cee, we don't need Medicaid for insurance. We have excellent Medicare and Medicare Supplemental policies. All of my care has been paid for in full. DH is in a nursing home that accepts Medicaid and the care is very good. He has rehabbed at 4 different facilities plus this one and this one is the best he's been in. We have no complaints at all.
Hello, NancyHB! You are close. Maybe all 3 of us can get together when Mary is over this way. As I told Noonrider, Do try Arimidex. Some have had reactions to the FILLERS in their anastrozole and have found that using the generic manufactured by Teva eliminated that problem. Keep trying. Fingers crossed that you can tolerate it! HUGS!!
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Ladies: Sorry to hear you have gone through this experience with some of the members. Not everyone gets to fly through treatment with few side effects - so, kudos to those who have had to endure the tough ones and fought through them. And to those members who made negative comments - yes, you did get some nasty side effects...BITCHINESS!!!!0 -
1Marmalade1, I would hope no one here is saying that AIs don't cause side effects. Of course they do. Every medication can. But it is important to remember that a lot of people have no SEs or they are mild and tolerable. I think that if AIs are appropriate to your treatment, it might be worthwhile to try them and not avoid them because of a possible SE. If you have problems with SEs, discuss them with your oncologist and determine what to do. Perhaps some members here may lash out because they are so scared - very understandable. But bitchiness is never good. HUGS to you.
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Bren thank you for your comments. They are insightful.
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I am on Effexor. I have been taking it for 2 months now, and just increased to 175 mg. It tends to make me a bit drowsy a couple hours after I take it, so Saturday when I had to do a long-distance drive I didn't take it. I can usually skip one day without a problem. But Sunday I totally forgot to take it. I didn't really think anything about it. Monday morning. I was SO SICK! I couldn't figure out what was wrong. I had a terrible headache, was dizzy, "foggy", my speech was slurred, and by 8:00 am I was throwing up. I had no idea that you can have withdrawal symptoms from Effexor so it wasn't on my radar. Because I was so sick I totally forgot to take my morning dose. When I started getting a weird shocky feeling in the back of my head I went into the doctor. My family has a high stroke risk so I was worried something was going on. That's when my doctor told me about the withdrawal syndrome. I took my dose and within an hour was feeling MUCH better and by afternoon was back to myself. This makes me wonder how difficult its going to be when I do decide to stop taking it.
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noonrider: I've been on generic Arimidex for about 5 months, had some achy joints but they've gone away with regular treadmill walking at the Y. Instead of gaining weight I've lost 7 pounds. At first had some trouble waking up often at night, I'm diffusing essential oils (cedarwood, lavender) and that's better now too. I'd suggest it's like going into a cool swimming pool, just jump in and get wet and deal with whatever happens. Why wait till Monday, start your pill today. 25-30% reoccurrence is too high to mess around with.
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Noontider, when it's time to stop the effexor, your doc should be able to help you wean down to off. It's a slow process.
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