For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Roosterlady--I've reached my 5 year mark last August,and just finished my AI therapy last week.I see my MO every 6 mos., maybe now that I'm done with my AI's it'll just be 1x a year? she usually order bloodwork every 6 mos too. In July when I saw my MO I asked her if I don't have to see her again,when I'm done with my AI's-- I thought my Primary Care Dr. will take over my care, Nope, she told me I will still have to see her for a few more years. I don't know if this is based on what health insurance I have, but I hope that it is still covered, I may have to ask the receptionist when I see her again in January. Or maybe I should call my insurance office and find out?
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Hi All,
I'm a seeking some help about the issues of depression (or bipolar depression) and aromatase inhibitors as I prep for a visit to a MO for a second opinion (urged by my other docs because the first MO suggested that I take Tamoxifen even though I'm postmenopausal). Sorry if others have addressed these issues.I've tried to comb through other posts on bco.org but I'm feeling overwhelmed!
Pre-Existing Issues:
- Mood: I have longstanding depression that has been very well-controlled for years on lamictal (typically used for epilepsy that stabilizes mood).I have not reacted well to anti-depressants especially to the newer ones now being tried to aid with joint pain associated with AI.
- Other Health:I have joint and orthopedic pain, especially arthritis in knee and spine (stenosis and disc problems) that affect my mobility and my ability to exercise. I am overweight with type II diabetes (currently controlled with diet alone).I'm concerned about the potential side effects of hormone suppression and the ways that hot flashes and lack of sleep could aggravate my depression and make it difficult for me to concentrate on work responsibilities.All in all, I'm worried that the combination of factors could lead to a very unhealthy spiral, making it difficult to exercise and to watch my weight, etc.
I reached out on bco.org in April.(Since then, I've been going through other things and now am about to start AI.)I'm figuring that others might have some thoughts. I've just tried to identify medical literature about depression and hormone suppression or AI and I'm feeling a bit overwhelmed.
- Have any folks with major depression, esp. BP 2 depression, come through without SE's. Was this serendipitous? Are there any steps you took to minimize mood SE's?
- Did any of you see a psychopharmacologist or other specialist for consult to help with choice of hormonal medication **or** for protective strategies (meds or otherwise)?
- In the hormonal therapy comparison chart, only one med —not an AI but Tamoxifen – is listed with mood or depression SE's. Are those with depression more vulnerable to mood SE's or so some experience mood SE's but not enough folks that it's listed in the comparison chart?
- Any complementary techniques help?(Accupuncture, tai chi,
- Any other advice?I think I saw some folks using benadryl to help with joint pain.Gee, that could help in long run.
I'd appreciate any ideas or insights! I'm going to check for other relevant threads but please do let me know if you think I should be posting this on a different forumThanks so much.
Blooming
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Thank you HapB.
I was able to cut Ativan in half. Want to cut Celexa half but Celexa requires scrutiny unlike Ativan.
Still walking 10,000 steps a day. My trend is about 5 days w 10000 steps a day and 1 day w about 2 or 3000 steps and then repeat again and again.
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a few pages back there was conversations on medigap insurance. Sorry for the late post but I wanted to add that Plan F will be phased out in 2020. Don't know if what that means for those on Plan F?? Plan G covers same things at same levels and except it does have a yearly deductible BUT monthly premium plus annual deductible is cheaper than monthly premiums yearly for Plan F
Our advisory recommended Plan G for those reasons for DH (I am not close to Medicare age yet).
No one could tell us what happens when Plan F is phased out.
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The Medicare F Plan will not be available for NEW enrollees. Current ones can keep their F Plan. F Plan Info gives the full details.
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PontiacPeggy-- thanks for that info!! Wonder what happens to the cost without new subscribers added to the insurance pool each year??
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DodgersGirl, I have no idea. I just know that I've been happy with my F Plan and find it worth the cost.
HUGS!
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Blooming - all good questions. Hopefully there are others who have had exactly the issues you are facing but mine may be relatable. Pre-cancer I took a mild antidepressant (nortriplyne) and kappra (an anti-seizure medication.). I had brain surgery 10 years ago and the seizures began about a year later. I also took C & G, and calcium with vitamin D and extra strength tynenal for my arthritis. I continue to take all of those. While I seem to be mildly depressed right now I (7 months into AI's), I think it more a function of it being my one year cancer anniversary and the holiday season (that I don't seem to be into) rather than the medication. My arthritis pain isn't worse but I have upped my exercise a little. I have added claritin in the morning and benedryl at night. I seem to have more trouble falling asleep some nights even with the benedryl (and when I get up to read I have a tendency to eat) but I don't think I am sleep deprived.
I'm surprised about the taximophilne (sp?). It's my understanding that AI's are actually a little less toxic than it is and there is a push from many doctors to get us to a post menapausal state (I have been there for years!). My MO warned me about hot flashes but they are less than they were before I was diagnosed (in retrospect I realize I should have been more suspicious about over-active hormones when I started getting them again at age 70.) Because I do take a lot of pills, I am very careful to make certain that I give each physician, including my very efficient internist, a list of everything, including over the counter meds that I take. I hope you have physicians who can work together with you to minimize SE's. It sounds like you may have more of a challenge than some of us in making "quality of life" decisions. On the other hand, not everyone has SE's from AI's either so I hope you will give them a try.
Good luck with your second opinion.
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Peggy, I was told since the Plan F pool will be smaller, that the price will go up. I went with Plan G since it is just like F except you pay the 183.00 B deductible each year.
Just got my DEXA results. Two years ago I was osteopenic. I had a perfectly normal scan this time, no bone loss at all. I have been taking 4000 mg. D3 and 1200 mg calcium with vit K. I am so thankfu, as I did not want to have to another med...
Has anyone been able to get Teva brand yet?
Blessings Ladies
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I believe Plan F goes away in 2020. I also just read that if you change Plan F plans, you have to pass underwriting, which none of us will do.
Our business pays 70% of our employee's health insurance premiums, which at an averaged rate are currently $913 a month. (We have a pretty old employee base). Up until 2 years ago, we paid the entire premium, and the deductible was 1,000, but now the deductible is 3,000, with reasonable copays, and the employees have to pony up 30%. I realize that those without health insurance are in an impossible situation, but man, I hate paying that bill every month. I can confirm that our physician clients (we're an accounting firm) are receiving less and less each year in the way of reimbursement for services (and have for many years) but their expenses continue to rise just like ours. I have to assume the ones getting rich are the insurance companies. I thought all along that assuming young men would sign up for the ACA was a pipe dream, they think they're invincible, and would rather have a 65" TV. Sure enough, the ones that signed up were ones with pre-existing conditions, who haven't been able to get insurance for years. I had a client that went thru a bankruptcy that took a job with Home Depot just for the health insurance. The bonus, he lost about 75 pounds he'd put on driving from place to place in his sales job.
I don’t know what the answer is, but I’ll bet not too many small employers provide as much as we do, and I wish it could be more. I’m not saying that we couldn’t have an affordable health plan, but even I could see the plan to raise money for it wasn’t going to work. Pushing the plan through to say the administration had accomplished something they said they’d do is no different than the Trmp administration repealing it to say it was something they said they’d do. The whole thing could be avoided if the government had the same health care and retirement options the general public did
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MegansGrandma, I was able to get Teva anastrozole late last week from Walgreens. I did have to wait a few days for it to come in.
HUGS!
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megans granma great news on your dexa!
I have osteopenia too and doc wants me to take boniva but I havent
Im taking the real arimidex .. I will up my vit d3 ive only bern adding 2000 mg , what calcium are you using? Ive been using a seaweed based one with vit k and some extra things in it but obviously what your doing is working
Ive only been taking the arimidex since oct 8
And Im so glad you guys are giving advise on the medicare.. i still have a year to go! Before im eligible
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MamaOz, I'm taking Viactiv calcium chews with vitamin K in them.. one in the morn, and one at night. The one your taking sounds fine. I think the vitamin D3 is probably what helped me the most. Hope yours will keep you from taking the Boniva.
Peggy, thanks for letting me know about Teva. I'll call my pharmacy and tell them to try again.
Blessings
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Blooming - I am taking anastrozole. I had some breathing problems when I first began to take it. I stopped taking it for a few weeks and then began again; the side effect did not recur. This pattern of having problems stop after taking a short break has happened to me with different kinds of medications. I don't know if other people have had this experience.
I've been living with hot flashes for many many years. The frequency has decreased, but I get one whenever I need to pee. Weird, huh? Anyway, when I started on anastrozole, they once again became more intense and more frequent. However, that didn't last. I think it was adjusting to the new levels of estrogen that caused the flashes. If I miss a pill, I am flashy. If I am steady, they decrease.
So, my advice based only on my experience is to be patient with the side effects; they might not hang around. Tolerate them a bit. Give them a chance to go away on their own.
I find it difficult to tell what causes the challenges I have. Is it aging? Is it cancer treatment? I don't know how to tell the difference. I've never been this old before. I've got friends who have never had cancer who also have joint pain, fatigue, fuzzy brain, etc. It's easy to blame the medication, but I don't know if that's really the cause.
I have had depression & anxiety all my life and have had a serious, dangerous depression episode. I don't feel that anastrozole has made me depressed. The hardest thing at the moment is fatigue. I don't know if that is the meds, the radiation, my status as a senior citizen or what. I know depression can make one tired, but this doesn't feel like depression. I mean, I'm not a joyous happy camper (since among other things I read the news) but I'm able to laugh, make plans, get out of bed, and be polite. When depressed I am a scary cranky zombie.
One of things that has helped me cope with everything is working to be less isolated. I found a group of breast cancer patients that I see once in a blue moon; we laugh and cry about our situations. I forced myself to socialize with some people in my community, going every week to a coffee klatch, even when i didn't feel like it. It took awhile but I finally feel like I have actual friends. As an introvert, I like to be alone, but isolating made me less healthy mentally and physically.
Everyone is different. Everyone's cancer is different, biology is different, treatment is different. It's hard to know what is right for oneself let alone what is right for another. I hope something I've said is helpful or even better, comforting. I'm waving a greeting to you especially, as a person who understands the black barking dog of depression.
Oh - I almost forgot to mention something else. My medical oncologist would recommend I take tamoxifen if I was unwilling or unable to take anastrozole. I'm at least 15 years past menopause, so this surprised me, but I didn't have a discussion about it because I am going to stick with the anastrozole for now.
ok, bye now!
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thanks megans granma!
Blinkie, thanks for sharing your perspective! And I agree its hard to to knowwhats from what!! As we age..
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I'm pleased. My regular semi-yearly check-up with my MO went beautifully. I discussed with him about taking Arimidex beyond 5 years. He said that for him, the jury is out. Keep in mind that AIs are for postmenopausal women and we are older and die of many different things. He said when I hit the 5 year mark we'll make a determination then (I'm at 3 years). He is extremely concerned about its effect on the bones and I have osteopenia. Plus he says my cancer was small and no node involvement - he thinks that there isn't much of a greater benefit (at least with today's research) for me to go beyond 5 years. Whatever he says to do or not do at that time, I will follow his advice. I adore him and respect him. I lucked out when I found him when I moved to Spokane. Anyway, feeling mighty good!
HUGS!
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Great news peg!!
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Great news Peg😍.
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Thank you, Mama Oz and Spookie! I'm grinning!
HUGS!
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Hi everyone!
Yesterday I had a good MO visit. My labs were good. I have been taking Arimidex for one year now. It was starting to make my finger joints very stiff and I was afraid that might be irreversible. So I was able to take a three week holiday from it. The joints got better. She decided to let me switch to letrozole Femara. I began today with it. I hope the joint side effects don't continue. Or any other SE's. I plan on taking the advice of my doctor and many others to keep taking it for 5 years and see what they say after that. My oncotype DX was 51. Very high reoccurrence possibility. I am very positive and have a great faith in God. I am feeling great. I had a vaginal hysterectomy two weeks ago on November 16. My gynecologist was able to remove my ovaries along with my uterus. I had a prolapsed uterus and bladder. My urologist was able to repair that. I am so glad I no longer have to worry about ovarian cancer. I have had the best doctors through all of this. I see my breast surgeon the end of this month. I had recondition using DIEP flap on June 5th this year. I am hopefully through with surgeries. I am getting 3D nipple tattooes next week.
I am taking vitamin D3 and calcium too. I have trouble sleeping mainly trouble falling asleep and I wake a few times. I've been taking Benadryl to help. I was taking 0.5 Ativan nightly for the past year but I decided to quit taking that. It sure helped me fall asleep but I wondered if I should take it that long?
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Great news Peggy. I too, found an awesome oncologist. She is very thorough. My first oncologist was great with picking the chemo, and I thank him for that, but with follow up care, and listening to you was another story. I am glad I switched 2 years ago.
I was finally able to get Teva brand at my local pharmacy again.
Blessings
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Great news Peggy - sending
. I’m having a mammogram of both breasts next week as regular check up. Please send good thoughts. My Dx was January of this year. So almost a year out.The week after that is my second Prolia injection. The first one was easy easy.
So far, doing well on name brand Arimidex. Joint and muscle aches come and go. All manageable. I’m grateful!
Much love and warm wishes to all this holiday season. I know it can be a bittersweet time for many of us.
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I've posted here about waking up with numbness in my left hand. After some research, it certainly appears as though I've developed carpal tunnel. I searched for some info on the link between Arimidex and carpal tunnel and found this old BCO thread:
https://community.breastcancer.org/forum/78/topics/726751?page=1#idx_23
Is anyone else experiencing this? What are you doing? I have a wrist brace from when I had DeQuervain's tendonitis in my right hand so I've worn that the last two nights. Didn't notice any difference yesterday morning but this morning the numbness seemed to be a little less. However, my hand hurts, as does my arm all the way up to my elbow. There are some braces tagged specially for carpal tunnel night wear; I don't know if I should order one.
I was supposed to see my MO next week but his office called yesterday and postponed my visit to Jan. 2.
MJ
UPDATE: I bought a night splint designed for carpal tunnel and wore it last night (Dec. 8) for the first time. Not at all uncomfortable. Woke up with NO numbness! The question is: How long will this last? Am I destined to wear this splint forever? I’m going to check to see if my Medicare covers any acupuncture; we have a terrific fellow up here and I might just go see him
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Hi
I am new to this site and have a question about the Anastrozole. I have been on it for 8 months and have really bad shoulder pain in one shoulder. Has anyone else experienced this? It is constant. Does it get better?
Thank you-
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Tappermom - I had carpel tunnel before BC. Had the left hand operated on 3 years ago and still need an occasional cortisone shot. The right isn't as bad but will need help eventually. My primary had me start taking calcium with vitamin D and Chondrosum and Glocosemene (not spelling either right) and I am convinced that it has allowed me to postpone the right hand surgery.
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Thanks, Taco. I’m already taking calcium and Vitamin D. Sure hate to add yet another med to my day but I might just try the glucosamine chondroitin. I’ve taken it in the past when I was having some knee creakiness. It’s crazy how the treatment for one thing leads to something else!
MJ
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Hey ladies:
So I have been on Arimidex now 6 months going on 7 months. Insomnia comes and goes. Very mild hot flashes.
Its new symptoms now. Sore hip on and off and sore upper spine on and off and now sore lower back. I am assuming this is Arimidex.
Anyone else?
wallan
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My knees have never been great, so it’s hard to tell what would have been a problem regardless, and what’s a side effect of the anastrozole. I had my right knee replaced in 2004, and luckily, I don’t have much pain with that one. The pain in the left knee comes after sitting for extended periods of time, and sometimes that’s only 45 minutes to an hour. Other days, no problems. I haven’t had any shoulder pain, luckily. I have noticed some lower back pain occasionally, but not nearly as often as the knee issue.
For what it’s worth, my niece, a physical therapist, said glucosamine/chondroitin is to sustain good cartilage, so for me she recommended turmeric. I’d tell you how its working, but I had it delivered to my daughter in Indiana by mistake. Will get it when I see her next week.
I’ve never been bothered much by hot flashes until starting anastrozole, but definitely have a lot more now. I don’t actually sweat, but the jury is out on that until summer. I bought a couple of cheap hand held personal fans that help.
I’ve always had sleep problems, so can’t say the anastrozole has made it worse
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HapB I don't have a recommendation as I don't know you or your age. My question is about the stats you quoted. " that with hormone therapy 1.3 out of 100 women will be alive due to hormone therapy." That sounds horrible unless I'm reading it wrong. I'm reading it as 1.3% (1.3 out of 100) will be alive due to hormone therapy after 5 years. Is that what you mean? If you have hormone therapy (and what do you mean by that) only 1.3% chance better than none? I don't think that's what you meant. I also am not familiar with Predict. Or, does that mean 91.2% plus another 1.3%?
Later- so I looked up the Predict thing and I understand the line I was questioning, but I will leave my question for others. Depends on your age. If it were me- I was diagnosed at 49- and my 5 year survival was that likely and I was having that much trouble, I would consider going off the hormone therapy. But then, I don't have kids so the thought of leaving before seeing grands doesn't bother me that much- still , I bet you have a better chance of a car accident than dying from this cancer.
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I am not sure how those predict calculators are very helpful. They are just general statistics that don’t apply to the individual. Everything I have read indicates that you halve your chance of recurrence with antihormonals (theoretically). However, if you are having life threatening side effects, you have to weigh that against the benefits. Your age should be part of that decision, as well. If I was older than 60 or 65, my decisions would be different than at 55.0
