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How Many are doing 10 years on Aromatase Inhibitors

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Comments

  • patoo
    patoo Member Posts: 5,243
    edited February 2016

    aussie, you probably already do or know these but one of the best things you can do for fighting bone density losses are weight bearing exercises, walking, dancing, training, etc. 2-3 times a week (make sure you put a day in-between each training). Also Calcium/Vit D3/K2, prunes on a daily basis also may help.

  • NatsFan
    NatsFan Member Posts: 1,927
    edited February 2016

    Aussieched - Patoo summed up exactly what I did all through AIs and afterwards - I'm a runner and do other weight bearing exercises as well. I try to average at least 30 minutes a day of exercise per my MO's strong advice, including running 3 days a week. On the other days I try to do some kind of yoga or pilates, free weights at least weekly, and I do a lot of hiking and walking.

    Also on my MO's strong advice I take Vit D3 to keep my Vit D count up, and I also take a calcium pill daily.

  • aussieched
    aussieched Member Posts: 87
    edited February 2016

    Thanks ladies, Yes I had heard of the Zometa and Prolia, but have not been offered it as yet. Was also aware of weight bearing exercise. Find it hard to do seeing I have constant hip pain when I walk even a little distance and the femara gives me bouts of vertigo, so hard to even stand up some days. Have been taking Vit D and Caltrate for the last 8 years. I think having the ovaries out 8 years ago, as I had not started menopause, has also had a detrimental affect on the bones also.

    Ched

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited February 2016

    ched.....have you had your hip checked???? I have had horrible hip pain for years, along with pelvic, buttock and shin and foot pain. The hip and foot pain were the worst. A few years back, I replaced my mattress and got orthopedic shoes. Over time, the pain only got worse. I chaulked up the pain to age and my aromatase inhibitor. Finally, a few months ago, I visited a neurologist. I went from having 2 bulging diiscs to 5 bulging discs! I'm now on nerve medication and most of the pain has resolved. If I skip the meds, the hip pain returns! My foot pain is still an issue....sooooo.....the neurologist did further testing and... I have a pinched nerve in my ankle! I'm scheduled for cortisone injections and if that doesn't work, I going to have surgery to move the nerve off the ankle. I had the same surgery years ago on my elbow. Bottom line...since seeing the neurologist, my quality of life has improved.


    I wish you well!

  • doxie
    doxie Member Posts: 700
    edited February 2016

    I second that! Get your hip checked. I was having a great deal of pain and of course my MO sent me for an Xray just in case. No mets, but I figured out that I needed to jog around the park loop in the opposite direction. I have one leg shorter than the other and the slope of the path was exaggerating this. It took a while with rest and NSAIDs, but I jog painlessly now.

  • claireinaz
    claireinaz Member Posts: 714
    edited February 2016

    Dear all,

    I just had my regular check up and saw a doc who was filling in for my MO who was on vacation. He told me informally that it looks like some docs believe people like me (high risk) will be on some kind of AI for the rest of my life. So it's a good thing that I am doing okay on aromasin :)

    Everything else was UNREMARKABLE, which is exactly what I want to be: unremarkable. I couldn't get out of the exam room fast enough; I think I left flaming footprint trails behind me on the floor when he said I'm fine....

    Whew.

    Claire

  • cp418
    cp418 Member Posts: 359
    edited February 2016

    claireinaz - LOL! I love your description of leaving a flaming footprint trail! I feel the same way!!

  • lago
    lago Member Posts: 11,653
    edited February 2016

    claireinaz I have heard the same. My 5 years are up this April. I'm taking it year by year after that. My bones won't be able to do this indefinitely. Prolia so far has only stopped the osteoporosis in my spine but no building yet. Weight bearing exercise I have always done but for some of us small framed women with a family history it is a challenge to stop the bone loss.

  • aug242007
    aug242007 Member Posts: 186
    edited February 2016

    Hi aussieched and all, aussieched, we have the exact diagnosis at the exact time frame. I had Isolated tumor cells in one sentinel node. I have been taking Arimidex for over 8 years and have also experienced dizziness. My BCI test showed just over the 5 mark at 5.3 which means some amount of benefit for extending the AIs. My new onc at Vanderbilt Medical is a Ph.D and dr and he believes that I can stop the Arimidex any time. My Oncotype is 11. I am now thinking about stopping soon. Wish we knew more and that research was better on deciding what to do.

    Anyone have any ideas?

  • aussieched
    aussieched Member Posts: 87
    edited February 2016

    Hi Aug242007, great to hear from you.

    Yes our diagnoses are almost the same, except I had a positive node with 1ml growth, would have loved for it to be isolated cells, and yes I have been on the femara a bit over 8 years now.

    My greatest concern has always been that the Oncotye was not available to me here in Australia in 2007 and have always wondered/worried about what my score might have been. I was 80% er and 80% pr, if that makes any difference to the oncotype. Also I had lumpectomy, not mastectomy and radiation. I went in there wanting a mastectomy but the surgeon talked me out of it. Something I have regretted as when the surgery was done, the mass was larger then was showing on the initial scans. I then also had further surgery for 29 additional nodes to be taken out, and further surgery to have my ovaries removed, as I had not started menopause.

    Are you able to advise what your er+ and pr+ levels were. I know all our breast cancers are different, however I have always wondered what my real risk is. They can't seem to tell me, and always sit on the fence when I ask.

    Ched

  • aussieched
    aussieched Member Posts: 87
    edited February 2016

    Aug242007

    Hi again, I also note from one of your previous posts that you are experiencing indigestion problems. I am also having indigestion problems, and it seems nothing that the doctor has suggested has helped. It started about 2 years ago out of the blue, and up until then, I had never experienced this problem. I have often wondered whether the long term AI's could be the culprit.

    I was 52 when diagnosed, so we do have a lot of similarities with diagnosis and problems along the way the last 9 years.

    Ched

  • lago
    lago Member Posts: 11,653
    edited February 2016

    aussieched When I mentioned to my MO that my ER/PR was low (30% 5%) she said it doesn't work that way. Although I had no nodes she said I was considered high risk for recurrence because of tumor size. In your case with one node and stage you might also be considered high risk for late recurrence. Oncotype wasn't available for those that were HER2+ or node positive in the states. Not sure if that's changed. So I never had an oncotype test due to HER2+

  • aug242007
    aug242007 Member Posts: 186
    edited February 2016

    Hi aussieched, I was diagnosed at the same age 51 and had ovary removal as you did. It seems to me I cycle through SEs. Now I am experiencing insomnia. I may not be able to continue the AIs. I just have to sleep. Like I mentioned my new onc who is also a Ph.D. is not sold on the BCI test and I was just barely over the mark for benefit. I believe I am just afraid of stopping the AI.

  • lago
    lago Member Posts: 11,653
    edited February 2016

    Aug242007 I too had sleep issues on Anastrozole (Arimidex). I switched to Exemestane and have no problem with sleep issues (and some other issues I was having with Anastrozole).

  • aug242007
    aug242007 Member Posts: 186
    edited February 2016

    Thanks, lago!

  • aussieched
    aussieched Member Posts: 87
    edited February 2016

    Hi Aug242007,

    Yes insomnia is another of my Femara issues, which has been going on for the last 8 years. Sometimes I will go 2 nights in a row where I just can't get any sleep at all. I drag myself off to work the next morning, hanging out to get home that night, thinking I will just bomb out, but to no avail, I can then have a 2nd night of no sleep. By the third night I normally get some sleep. The nights when I do sleep, I would only average 3-4 hours at the maximum. Consequently I feel like I am living under a cloud all the time feeling so tired.

    I am also afraid of stopping the Femara, as the Femara articles report a slightly lower recurrence rate than the tamoxifen. My doc encouraged me to continue the Femara for as long as I can stand the side affects or level of bone loss. He said at that point I would then go onto tamoxifen as he feels I need to take something for at least 10 years.

    Ched

  • BookLady1
    BookLady1 Member Posts: 196
    edited February 2016


    Hi - I have been taking Ambien as a sleep aid, off and on, for 5+ years. It has saved my life through seeing my parents through end-of-life care, my BC treatment and Arimedex since 5/15. I do have a psychiatrist and GP following my care. It is worth checking out! A peaceful night to all, Lind

  • aug242007
    aug242007 Member Posts: 186
    edited February 2016

    Thanks so much, Aussieched and BookLady1. I have the exact problem as Aussieched. Also, have tried Ambien with no luck. Now just using melatonin and occasionally Neurontin. I just wonder if it get better after we finish the AIs?

  • BookLady1
    BookLady1 Member Posts: 196
    edited February 2016

    I sympathize with the sleep problems. It affects every part of our day, doesn't it? Iago, I start Prolia next month. Fighting with insurance to get bone density test paid for before I begin so we can track how I'm doing on the drug. Makes sense to me. They don't want to pay for yearly exam, even with BC and osteoporosis and many doctors weighing in. This gets exhausting. Any problems with Prolia? I will look for a thread.✌️❤️ Linda

  • cp418
    cp418 Member Posts: 359
    edited February 2016

    Booklady1 - Prolia muscle injection was far easier for me than the IV Zometa infusions. Fast in/out of office and no sitting in infusion room having IV setup. Also, I did not notice any aches afterwards where I think some people take a Claritan after Zometa. Your Doctor needs to contact your insurance company IMO. Enough of patients have to FIGHT for adequate care!

  • lago
    lago Member Posts: 11,653
    edited February 2016

    I actually have my Prolia sent to my home. My husband shoots me up in my tummy.

  • tallnterrific
    tallnterrific Member Posts: 19
    edited March 2016
    I am seeing my MO tomorrow to find out what hormone therapy is needed. Here is my story: I am postmenopausal and my tumors had 99%ER+ and 94% PR+ according to the surgery pathology, but the MammoPrint genetic testing indicated lower levels - around 60% and 48%. Of course each tumor(3) was somewhat different, but basically Luminal A. I had 2mm tumor in the first node and 28 radiation treatments already. Because of the MammoPrint they did not do chemo.

    My question is how do they decide which AI to prescribe and what are the differences between arimidex, femara, and the other options? Thanks for any information you can provide.
  • lisa2012
    lisa2012 Member Posts: 288
    edited March 2016

    I have been on the AIs for 3.5 years. I have been plagued with arthralgia, aches, pains, stiffness, fairly consistently, I know this is not true for all- my sister on Tamoxifen 3yrs and Aromasin 3yrs said they were both "non-issues" for her, lucky girl. After a year I even had a bone scan to see if I had mets to the bone. All OK. but I wonder if this is just how it will always be for me. I am super cautious exercising because it can make it worse. I've had trigger finger and thumb, cortisone shots 2x.

    I can see why people might not comply and keep taking it. When I have asked my oncologist about these side effects, he just asks- me if I can tolerate it. Grrr.

  • patoo
    patoo Member Posts: 5,243
    edited March 2016

    Tnt, it seems the AI mostly prescribed is arimidex and then docs will switch to the others if we cannot tolerate the SE's. Not sure what the true difference is but others will probably weigh in with better info for you.

    lisa, that is what many MO's want to know is if you can tolerate the SE's. Your body is saying gimme, gimme, gimme for the estrogen that the AI is keeping at bay. It may very well be that way until you have finished doing your time on these drugs but many have reported the SE's have gone away once stopped. I fully understand those who choose to be non-compliant but remember, as one of our sisters JO-5 used to post, battling SE's of these meds are absolutely easier than battling a recurrence, which may reappear as mets. Hang in there if you can, changing manufacturers or to another AI which may help. Hug

  • cp418
    cp418 Member Posts: 359
    edited March 2016

    TallnTerr - here is a link describing different AIs.


    http://www.breastcancer.org/treatment/hormonal/aro...


  • lago
    lago Member Posts: 11,653
    edited March 2016

    TallnTerr I would expect your doctor to prescribe one of them given your diagnosis and stage. I started with Anastrozole (arimidex) for 3 years then switched do to side effects to Exemestane (Aromasin). Been on that for almost 2. Looks like I will be continuing for another 5 years. Don't be surprised if your MO recommendes 10 years.

  • tallnterrific
    tallnterrific Member Posts: 19
    edited March 2016
    Patoo, Lago and cp413 thanks for your thoughts and information. He did prescribe arimidex. I am to get started on Calcium/vitamin D supplements too.

    I asked several questions about what to be watching for in the way of symptoms but he just said to stop thinking about it. Oh well. It was pretty much a non-event.
  • lago
    lago Member Posts: 11,653
    edited March 2016

    Everyone is different. You'll know if you are getting a side effect. Just don't ignore it. Including mood changes.

  • lisa2012
    lisa2012 Member Posts: 288
    edited March 2016

    Patoo and Iago, good points from both of you. Aches and pains and stiffness are better than cancer. Just jealous of those (like my sister =) who had no SEs from any of the AIs =it was a non-issue for her, lucky girl.

  • patoo
    patoo Member Posts: 5,243
    edited March 2016

    Lisa, many things in life throw us for a loop, this is just one of them. You will get through it. Hug

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