I'll try again/side effects of AIs

ohilly
ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
No one responded to my post about the side effects of AIs, so I'll try again:

I wonder if other people are concerned about the fact that these drugs (Arimidex, Femara, and Aromasin) are so new that no one seems to know what the long term side effects are. For me, it's hair thinning and severe insomnia, but there could be worse side effects. I found a report online (google 'Breast Cancer Action - side effects - Aromatase inhibitors' and it will probably come up) in which it listed ses like retinal detachment, osteoporosis, and CARDIOVASCULAR EVENTS!

Don't get me wrong: I am not complaining about having to take Femara. I'm glad it's around to save my life. I just feel angry that Novartis did not publish the ses online except in very, very small print (they said only 5% of women had hair thinning, but in a survey of 2,000 women done by this group Breast Cancer Action, it was over 30%) and that my oncologist never told me anything about the ses. I am going to see my onc tomorrow and plan to discuss all this.

If I had known the cause of my hair thinning in the beginning, maybe I would not have gotten so upset because I would have known what to expect. Now I am worrying that there may be other, more serious effects that are not just cosmetic. I feel like starting a blog on this topic!

Ohilly

Comments

  • mimivac
    mimivac Member Posts: 2,143
    Ohilly, I don't have an
    Ohilly, I don't have an estrogen positive cancer, so I won't be taking any of these drugs, but I think you are right to investigate side effects and discuss them with your onc. There is so much we (and even doctors) do not know about these drugs. Like Judy and her Reglen experience, we all need to be aware of the possible side effects. I think a blog is a great idea.

    Mimi
  • chenheart
    chenheart Member Posts: 5,159
    Treatment/Side Effects
    I dunno Ohilly~ I just looked at all of it: MRIs, Ultrasound, Surgery, Poisonous chemotherapy, uber-painful Neulasta, Radiation, neurapathy, weight-gain, insomnia, 5 years of Arimidex with so far its main side effect being no cancer as 100% worth it! Perhaps if I had known how horrible some of it was going to be, I would have opted out of life-saving treatment. I trusted my Cancer Care staff ( including my sister in law who is a chemo-nurse) and in my heart of chenhearts, I just knew they wanted me to not only Survive Cancer, but Thrive! So I forged forward, and didn't look back.

    That is of course, not everyone's plan of action, but each of us does what we are comfortable with...I admit I was somewhat of an Ostrich, but I functioned better that way.

    Hugs, and I am glad you are finding what works for you!!! That's what its all about, sin't it????
    Claudia
  • ohilly
    ohilly Member Posts: 441
    chenheart said:

    Treatment/Side Effects
    I dunno Ohilly~ I just looked at all of it: MRIs, Ultrasound, Surgery, Poisonous chemotherapy, uber-painful Neulasta, Radiation, neurapathy, weight-gain, insomnia, 5 years of Arimidex with so far its main side effect being no cancer as 100% worth it! Perhaps if I had known how horrible some of it was going to be, I would have opted out of life-saving treatment. I trusted my Cancer Care staff ( including my sister in law who is a chemo-nurse) and in my heart of chenhearts, I just knew they wanted me to not only Survive Cancer, but Thrive! So I forged forward, and didn't look back.

    That is of course, not everyone's plan of action, but each of us does what we are comfortable with...I admit I was somewhat of an Ostrich, but I functioned better that way.

    Hugs, and I am glad you are finding what works for you!!! That's what its all about, sin't it????
    Claudia

    I agree
    Claudia, I totally agree with you - knowing all of what I know now - severe insomnia, horrible hair thinning, and the possibility of even worse side effects - I STILL would have taken the Femara because survival is my priority. But I just wish I had known anyway or asked more questions about the side effects because I wouldn't have spent months wondering why my hair wasn't growing back like everyone else's, and why I can never, ever sleep. Just knowing what to expect would have been nice, even if I would still do the same thing (which I would have!).

    Ohilly
  • phoenixrising
    phoenixrising Member Posts: 1,508
    I saw that article on the
    I saw that article on the BCA site. It was a voluntary survey wasn't it? There probably was about 30 se. For myself it's been disheartening to experience some severe se and not be able to find info about it on the "mainpage" and having to dig further to find out it's merely a se of the drug and not to panic. So far I've done Tamoxifen and Arimidex and there was no way I could stay on them. Soon I'll try aromasin and hopefully it and I will get along. But you're right, even knowing about the se wouldn't have stopped me from trying them but I wouldn't have wondered what was happening to me when I experienced them.
  • rjjj
    rjjj Member Posts: 1,822 Member

    I saw that article on the
    I saw that article on the BCA site. It was a voluntary survey wasn't it? There probably was about 30 se. For myself it's been disheartening to experience some severe se and not be able to find info about it on the "mainpage" and having to dig further to find out it's merely a se of the drug and not to panic. So far I've done Tamoxifen and Arimidex and there was no way I could stay on them. Soon I'll try aromasin and hopefully it and I will get along. But you're right, even knowing about the se wouldn't have stopped me from trying them but I wouldn't have wondered what was happening to me when I experienced them.

    what side effects
    just wondering what kind of side effects you had and why you could not take the Tamoxifen and Armidex? i will be on one of these don't know which one. I wish you good luck on the aromasin.

    God Bless
    Jackie
  • pkline64
    pkline64 Member Posts: 3

    I saw that article on the
    I saw that article on the BCA site. It was a voluntary survey wasn't it? There probably was about 30 se. For myself it's been disheartening to experience some severe se and not be able to find info about it on the "mainpage" and having to dig further to find out it's merely a se of the drug and not to panic. So far I've done Tamoxifen and Arimidex and there was no way I could stay on them. Soon I'll try aromasin and hopefully it and I will get along. But you're right, even knowing about the se wouldn't have stopped me from trying them but I wouldn't have wondered what was happening to me when I experienced them.

    aromasin
    I am new to the Survivors Network so I hope that I am doing this correctly. I had my breast cancer surgery last August with some spread to the lymph nodes(3 microscopic)). I started chemo, had 1 treatment and developed c diff, thrush, and a heart enzymne problem because of the c diff. My oncologist stopped any further chemo, then I completed radiation and now am taking aromosin since I developed a lot of all over body pain particularly leg, foot and ankle pain and weakness. I fell because of this and broke my ankle. So, now I am taking aromasin. Only been it for 4-5 weeks but already developing muscle, joint pain & breast pain. Was wondering how you were making out with it and how you were coping with the side effects?

    Thanks,

    PKline
    [email protected]
  • cabbott
    cabbott Member Posts: 1,039 Member
    pkline64 said:

    aromasin
    I am new to the Survivors Network so I hope that I am doing this correctly. I had my breast cancer surgery last August with some spread to the lymph nodes(3 microscopic)). I started chemo, had 1 treatment and developed c diff, thrush, and a heart enzymne problem because of the c diff. My oncologist stopped any further chemo, then I completed radiation and now am taking aromosin since I developed a lot of all over body pain particularly leg, foot and ankle pain and weakness. I fell because of this and broke my ankle. So, now I am taking aromasin. Only been it for 4-5 weeks but already developing muscle, joint pain & breast pain. Was wondering how you were making out with it and how you were coping with the side effects?

    Thanks,

    PKline
    [email protected]

    Just a note
    Start by getting your vitamin D level checked. I took supplements, went outdoors, had joint pain with an aromatase inhibitor (exemestane). Oh, and I drank milk 4 X a day with D added. I still tested low. The joint pain disappeared when my D level came back up. It may not work for everyone, but if you are low it might just work for you.

    C. Abbott
  • ritazimm
    ritazimm Member Posts: 171
    AIs
    I am not as concerned about the side effects of the drugs as I am about the fact that your doctor didn't inform you of the possible risks/side effects. There is no way I will take any drugs/medications without knowing how it might help me and how it might hurt me. If your doctor doesn't openly tell you these things, ASK HIM/HER! It is important to have some control on what is happening to your body and you can't make decisions if you aren't imformed (unless you choose to be uninformed, as I do know some people don't want to know).

    Good luck!
    God bless!
    Rita
  • mgm42
    mgm42 Member Posts: 491 Member

    I saw that article on the
    I saw that article on the BCA site. It was a voluntary survey wasn't it? There probably was about 30 se. For myself it's been disheartening to experience some severe se and not be able to find info about it on the "mainpage" and having to dig further to find out it's merely a se of the drug and not to panic. So far I've done Tamoxifen and Arimidex and there was no way I could stay on them. Soon I'll try aromasin and hopefully it and I will get along. But you're right, even knowing about the se wouldn't have stopped me from trying them but I wouldn't have wondered what was happening to me when I experienced them.

    Switched to Aromasin...
    Had strong ses from Arimidex. I had swelling of the joints in my hands, fingers and wrists to the point that I developed trigger finger in three fingers of my right hand (I'm right handed). I will need surgery, probably this summer, to release the tendons. So, I checked with my onc and she put me on Aromasin, which she said was at the other end of the AI continum and still be an AI. I know that sounds strange, but so far, so good. My ses have not increased in intensity nor have they traveled to other joints. So, each morning, I do my own version of physical therapy with my hands and I can still paint, write and chop onions. LOL. Everything is working. Yeah! Good luck with your Aromasin. Hugs, Marilynn
  • phoenixrising
    phoenixrising Member Posts: 1,508
    mgm42 said:

    Switched to Aromasin...
    Had strong ses from Arimidex. I had swelling of the joints in my hands, fingers and wrists to the point that I developed trigger finger in three fingers of my right hand (I'm right handed). I will need surgery, probably this summer, to release the tendons. So, I checked with my onc and she put me on Aromasin, which she said was at the other end of the AI continum and still be an AI. I know that sounds strange, but so far, so good. My ses have not increased in intensity nor have they traveled to other joints. So, each morning, I do my own version of physical therapy with my hands and I can still paint, write and chop onions. LOL. Everything is working. Yeah! Good luck with your Aromasin. Hugs, Marilynn

    This is really good news to
    This is really good news to me as I will be starting aromasin soon. Feels good to be able to do things again doesn't it?
    jan
  • phoenixrising
    phoenixrising Member Posts: 1,508
    ritazimm said:

    AIs
    I am not as concerned about the side effects of the drugs as I am about the fact that your doctor didn't inform you of the possible risks/side effects. There is no way I will take any drugs/medications without knowing how it might help me and how it might hurt me. If your doctor doesn't openly tell you these things, ASK HIM/HER! It is important to have some control on what is happening to your body and you can't make decisions if you aren't imformed (unless you choose to be uninformed, as I do know some people don't want to know).

    Good luck!
    God bless!
    Rita

    I completely agree with you
    I completely agree with you Rita. How can we make informed decisions if we only have half the facts. Its fine if you make it through all your tx's without any disabling effects but if you're the 1,2 or 5% that doesn't and you were unaware that it could happen one might feel very deceived.
    jan
  • creampuff91344
    creampuff91344 Member Posts: 988

    I completely agree with you
    I completely agree with you Rita. How can we make informed decisions if we only have half the facts. Its fine if you make it through all your tx's without any disabling effects but if you're the 1,2 or 5% that doesn't and you were unaware that it could happen one might feel very deceived.
    jan

    I will give you an exact
    I will give you an exact quote from my oncologist regarding AI's. "You will probably develop some form of bone density issue while on Femara, so you will be put on additional calcium and calcium+D. We will do a bone scan once a year to see just how much deterioration there is in the bone, and make decision based on the results." Now, does that tell you that they know there are side effects that can be debilitating? When I asked about taking tamoxifen instead, he agreed to prescribe it for me, but then said, "With tamoxifen women have a good chance of developing uteran cancer, but we will just do a hysteroctomy when the time comes." Guess I see real quick where he stands. Just take the stuff, and don't worry about the consequences. We have a pill for any side effect. Does that sound right to you. I know these hormone treatments are aimed at helping us extend our lifespan, but at what cost. The AI's are so new that they really don't have long term data to know exactly what the ramifications will be 20 years down the road. We may end up aith a generation of breast cancer free individuals....all in wheelchairs. Personally, it is a decision we each have to make. I have agreed to take the tamoxifen, and just watch for any signs of problems in the uterus, as well as have six month checkups with the gynocologist, instead of the usual yearly checkup....and then I cross my fingers. Good luck everyone.

    Judy
  • ritazimm
    ritazimm Member Posts: 171
    rjjj said:

    what side effects
    just wondering what kind of side effects you had and why you could not take the Tamoxifen and Armidex? i will be on one of these don't know which one. I wish you good luck on the aromasin.

    God Bless
    Jackie

    Side effects
    Hi Jackie,

    I did not have any problems with the tamoxifen. I did have increased vaginal discharge and the concentration and memory problems but who knows if the mental issues were due to the tamoxifen or just the whole cancer experience and the depression that went along with it? My sister on the other had was actually allergic to the tamoxifen and had an itchy rash for two years (she failed to tell her doctor about the itchy rash or she would have been taken off of it sooner). I was switched to Arimidex a couple of months ago due to interactions between it and my antidepressant and since the chemo had thrown me into menopause anyway. I have occasional bone pain but again is it the medication or just that old Arthur Itis? I am getting old ya know. I'm sure that many people do have more side effects from these drugs but I really haven't had any issues. That of course doesn't say that it might be having long term or unknown side effects but I'm alive so I'll take it as it comes and be thankful for today!

    God Bless you as well,
    Rita