At What Age Were You First Prescribed an Aromatase Inhibitor?

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LW0919
LW0919 Member Posts: 196
At What Age Were You First Prescribed an Aromatase Inhibitor?

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  • LW0919
    LW0919 Member Posts: 196
    edited March 2015

    I'm 43 and am post menopausal after having a full hysterectomy and oophyrectomy a little less than a year ago. I was on tamoxifen until a couple of weeks ago when my MO determined that I would have a greater benefit from Anastrozole. I got the bottle filled and have only taken the med twice in the last 2 weeks.

    This drug scares the life out of me.

    I've done some research and the side effects are pretty scary. Granted, I may not have any side effectsbut from what I've read, I would be pretty lucky if I didn't. The possibility vaginal atrophy is horrifying. The bone loss is also very concerning. I already have 2 herniated discs in my neck and arthritis in my lower back and shoulder. I'm trying to determine at what point do I think about the quality of the rest of my life. I don't want to age long before my time.

    We've all shared so much with each other so hope you don't mind if I ask you all at what age you started an Aromatase Inhibitor? I'm curious how many of you were in your early 40's or even younger. If you would be willing to share I would love to hear from you. I need some perspective!

    Thank you so much! ~ Lori

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2015

    I was 54 and did 5 years with no problems. If you have significant problems with one Al; you can try another, or go back to tamoxifen at that point. You won't know until you try. (I will add that if you just can NOT bring yourself to take it, you should be honest with your oncologist and get back on tamoxifen right away....you don't want to be taking nothing!)

  • LizA17
    LizA17 Member Posts: 159
    edited March 2015
  • InGodshands
    InGodshands Member Posts: 28
    edited March 2015

    Great thread! I am 44 to and facing same decisions. Currently continue on Tamoxifan but MO wants me to switch following ovary removal. Hoping more ladies chime in.

  • daisylover
    daisylover Member Posts: 310
    edited March 2015

    Had Oophorectomy yesterday at 54. Will start Exemestane April 1st. Influenced by results of SOFT.

  • smidgen
    smidgen Member Posts: 3
    edited March 2015

    Hi Lori,

    I'm 47. I was pre-menopausal before chemo, and as soon as I finished chemo up last month, my MO prescribed Lupron (ovarian suppression)+ Exemestane (aka Aromasin). My tumor was strongly ER+/PR+, and though it was on the small side, it was already showing an inclination to travel (SND done during lumpectomy showed I was node-positive). My onc doesn't want any estrogen anywhere that could feed a rogue cancer cell that might be floating around, so he recommended (ovarian suppression + AI) before chemopause could end. I got a blood clot in my port line right after implantation so that made Tamoxifen taboo for me anyway. On top of that he advised that the latest SOFT results show a dramatic improvement in survival rates and recurrence risk for "high-risk" women when ovarian suppression is combined with an AI. ("High risk" patients in the study were those who got chemo prior to hormone therapy.)

    So I completely understand my MO's logic, and I am complying. But am I scared about SEs, and aging prematurely? YES. And part of me feels silly about that fear because it seems like it's just vanity. At the same time though, the physical cost I'm paying is for a benefit that is uncertain, since a) we don't actually know if there *is* a rogue cell floating around, and b) if there is, we don't know for SURE that the hormone therapy will wipe it out 100%. It's awful, and if I think about it too much I get angry and sad and confused. So instead, I try to keep what JO-5 said above in the forefront: "The side effects of an AI are easier to treat than cancer."

    Good luck with everything going forward (you've already been through so much). I think we will be seeing a lot more young women getting the same recommendation - ovarian suppression (either surgical like yours or chemical like mine) plus an AI - in the coming months and years. You aren't alone.
    Bests,smidgen
  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2015

    Age 47 -- just started ovulation suppressor + Aromasin due to SOFT study results. (I was originally slated to take Tamoxifen.)

  • LW0919
    LW0919 Member Posts: 196
    edited March 2015

    Smidgen - Exactly!! You summed up exactly what I feel, angry, sad and confused over the choices that we are forced to make because of cancer.

    Thank you so much to everyone who has shared so far! Hopefully we can keep this hoping as I'd like to see how many more of us "middle aged" (ouch) women there are that are on AI's.

    ~Lori

  • inks
    inks Member Posts: 746
    edited March 2015

    I'm 38 and had oophorectomy because of BRCA+ in February. So far the annoying side effect is that my hair is thinning, but that could be from the ovaries being out too. I just started using Rogaine for the hair. I don't know if I'll stay on exemestane yet or go back to tamoxifen. You could just stay on tamoxifen if your side effects are already intolerable.

  • sunseta1969
    sunseta1969 Member Posts: 33
    edited March 2015

    I'm 45 and can't take tamoxifen because I have a blood clotting disorder. So the dr started me on Lupron on Monday and then today I get a call from them asking what pharmacy I use so they can call in a RX for Femaral. I was totally shocked. We did not discuss any of the AI's and so I guess I feel I have no choice in which one to take. They all seem to have bad side effects but I just wish she had talked to me about them and told me why she chose that one. I am going to give it a try and I see her at the end of the month so I will definitely be bringing it up then.

    Amanda

  • Kicks
    Kicks Member Posts: 4,131
    edited March 2015

    I was 63 when DXd and still 63 when I started Femara/letrozole. I had gone through natural menopause (no surgery) 19 yrs before at 44. Still on it 5+ yrs later and will be on it 'forever'.

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited March 2015

    I was 49 at dx and peri-menopause. Had one period shortly after first chemo and that was it, no more. But MO put me on tamoxifen at first because apparently there's no way to know for certain if the chemopause is permanent or not. Just wait and see. After 2 years with no period, they tested my hormone levels and said I was definitely post menopause. MO still wanted me to stick with tamoxifen for 2 years then switch, but I was having real bad SEs from it so we went ahead and switched to the Arimidex. So, age 51 when started the A.I.


  • debiann
    debiann Member Posts: 1,200
    edited March 2015

    I started arimedex at 53. I was postmenopausal. I've been on it 4 months and so far so good, but I know over time things could change. Maybe since I experienced many of the same side effects during menopause,(hot flashes, extra aches & pains, vaginal dryness), things don't seem that different to me. I am sure this is much more difficult for younger women who did not have a natural menopause (which really sucked too, btw). 

    On my gynos recommendation I've been using coconut oil for the dryness and its working well.

  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited March 2015

    I started Femara at the age of 41 after my oophorectomy.  The side effects (which were manageable to begin with such as mild hot flashes) subsided after 6 months.  Right now, I barely have any side effects.  I have been on it for over 1.5 years.  My MO said the body gets used to it, and she said she has seen side effects subside in other patients.

  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited March 2015

    Lori,

    I would like to add that recent trials have actually shown that the younger you are the more benefit you get from ovarian suppression + AI versus tamoxifen only -   especially in higher risk women (those who got chemo) as stated elsewhere on this thread.  There is actually a large difference in preventing recurrence between the two regimes (with AI + ovarian suppression being superior).  Obviously, some women are quite unable to tolerate some medications, and for those women, it does not make sense to take such medicines after they make their individual risk/benefit analysis.  However, until you try you really do not know how you will respond to the AIs.

  • Janett2014
    Janett2014 Member Posts: 3,833
    edited March 2015

    LW0919,

    I started Anastrazole nine months ago at age 60. I have had no side effects, so I just want you to know they don't happen to everyone. I was having mild hot flashes long before Anastrazole, and I'm still having them. I was seeing a dermatologist for thinning hair for about a year before my diagnosis, so I can't blame that on Anastrazole either. I've had no aches or pains and no vaginal issues. I know I'm lucky, and I appreciate that. I do believe though, that people who are doing fine don't typically post here. My advice is to take it as directed and see what happens. If you have issues, then tell your doctor.

  • LW0919
    LW0919 Member Posts: 196
    edited March 2015

    Thank you all so much for your posts. It helps to know that other people have or are currently taking these drugs and are around about the ame age. I would rather read about real life experience than just the perspective of my MO. Who I ultimately do trust but again would like yo hear from "real" people.

    I've decided that I will start Anastrozole again tonight. My MO doesn't know I had stopped. I'm sure she would give me a tsk, tsk and tell me to start immediately. I have to say, it felt good to be a bit of a rebel for a couple of weeks. I got to decide what to do and I felt like I was in control for a little while. I feel like we kind of loose a bit of control when we are diagnosed with cancer. We have to do things, hard things to get through it if we want to live and not have regrets. Here's the catch though, now if I have a recurrence I will, deep down, wonder if it happened because I stopped hormone therapy for a couple of weeks. How exhausting! I wish I could turn the mind off for a while. Better yet, wouldn't it be great if we didn't even have to worry about which drugs to take and if what were willing to trade off (health wise from a SE perspective) if need be, to do all we can to ensure we live as long as possible?

    ~Lori

  • Fourminor
    Fourminor Member Posts: 354
    edited March 2015

    I'm 47, was very premenopausal at diagnosis. After Oncotype came back at 20, was recommended to do chemo. Had an allergic reaction to chemo and the next week ruptured an ovarian cyst, which was very painful. I decided I needed that to clear up before I took anything. A month later new MO put me on OS. I am in my second month of Zoladex injection. I am presuming that by next week my estrogen level will have dropped off enough to start AI. I delayed starting it also because i was having my exchange surgery and was prohibited to exercise which I would like to be doing to help with SEs.

    I can't say I'm looking forward to it. Already missed my first period and am having daily hot flashes. But if there are any cancer cells anywhere in my body they need to be starved to death, and that's it.


  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    Happy to have found this thread. I'm 40. Was 37 at diagnosis. Went through chemopause but period came back eventually and is like clockwork now. Been on Tamoxifen for two years. My MO is now suggesting we try ovarian suppression and switch to an AI due to SOFT study results. I am so torn on this decision.... curious to hear what others have heard. Thanks!!!

  • JWoo
    JWoo Member Posts: 1,171
    edited March 2015

    I was 37 at dx, 39 now, and my MO just handed me the SOFT study and asked me to look it over and consider changing over, as I started my period again regularly a few months ago after chemo and tamox-pause. I too am concerned about the serious side effects of OS/AI (ie: cardiovascular failure, bone issues) I can handle hot flashes and everything else, but I don't want to focus just on the cancer, and end up having a heart attack at 45 or major bone breakage. Osteo and cardio issues abound in my family history. My MO said that doesn't matter all that much, but I am not sure.

    It is a lot to consider, especially since it was a 5 year study, and we don't know how it will affect ppl in the long run yet. i wish they would have done this study 20 years ago.

  • smidgen
    smidgen Member Posts: 3
    edited March 2015

    Hi everyone,

    FWIW I'm still not having any serious SEs from my Aromasin/Lupron combo (other than more intense hot flashes than I had during chemopause, but based on what my mom has said about her biological menopause, I think I would have gotten those eventually anyway). Everyone is different, and I might get worse SEs down the road...but I might not. In the meantime I'm going to focus on doing what I can to reclaim my life and my health, to wit, eating well, exercising, learning new things, etc.

    I think it's important to keep in mind that not everyone gets every SE that's been reported for a drug, and that the reported SEs for any given drug are not all equally likely. One thing I've learned from lurking on these boards since my dx last August is that our reactions to various TXs are as individual as we (and our cancers) are. So we just have to make the best decisions we can when we have to make them. I too wish things were more clear-cut but dang, from what my MO says, we rarely get results as clear-cut as the ones from the SOFT trial (at least, for premenopausal high-risk ER+ women like me). I don't like it but I'm going through with it, and I trust my MO to monitor me for cardio and bone density issues going forward.

    Best wishes to everyone, and I hope all of you can find peace with whatever path you choose!

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