AIs - am I going to have to go on disability?

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AnacortesGirl
AnacortesGirl Member Posts: 1,758
edited June 2014 in Stage III Breast Cancer

Earlier this month I posted about the SEs I've been having from Aromasin.  Well, I went ahead and saw the onc on Monday.  I really wanted to make it till my scheduled appt and finally do a full 3 months between visits.  Oh well.  I'm going back to see him on Friday and would like some comments from the Stage III'ers.

Because I am having headaches and it's been a year since my last brain MRI I now have that scheduled for Thursday.  I think the headaches are from the Aromasin and he does also but he felt this was the precautionary thing to do.  I'm not worried about the scan.

What does bother me is these SEs.  He gave me a script to take the next two weeks off work.  I quit the Aromasin on Sunday and he wasn't very thrilled about that when I saw him Monday.  But I did get him to agree that I would not take it this week and then we'll talk at Friday's appt. 

Yesterday was a better day.  No swelling in the hands or feet and just a little soreness.  I even did my 2 mile roundtrip walk to physical therapy.  However I ended up taking a Vicodin late in the afternoon when my headache came back quickly (usually it's slow or I wake up to it).

Today I woke up feeling terrible.  Swelling is back and the right foot is especially sore.  Knees aren't too back and hip only hurts a little.

So I'm looking ahead and wondering how the heck am I going to make it on 5 years of AIs?  I know that I may react differently on Femara or Arimidex but then again, I may not. 

Are there any of you who had to go on disability because of the AI side effects?  They just keep getting worse and, even though I try to downplay it, they affect my thinking.  I have a year to go before retirement is even possible and it would still be at a rather young age (54).

I'm just wondering what my future looks like.  The onc is adamant that I need the AI and I have to agree with him.  The advanced cancer and BRCA + says that I need them.  And to top it off, my sister's cancer came back 3 months after she was off tamoxifen.  A year later she was gone. 

Am I going to be walking around with a cane?  A walker?  I'm worried.  Quality of life is important. 

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited June 2011

    Thanks Sherri.  Just hearing from someone that the SEs actually got worse and then got better helps.  Right now I just feel like I'm spiraling down and I was really hoping to plateau.

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  • Maire67
    Maire67 Member Posts: 768
    edited June 2011

    Finishing my 5th year on AI's this summer.  Aromasin for 4.5.  Lots of ups and downs. I managed to work full time.   There were days when I thought I couldn't take it one more day but I  will stop soon...   In time I think my body adjusted to it. a bit 

    ...I'm so used to flashes I have started to look forward to them in the winter...I've lowered the thermostat.    I took a 3 week holiday once and the symptoms eased but did not disappear.  I'm glad I stuck with it and now fear what will happen when I stop...always something.  One friend stopped for 6 months after 5 years and the IDC came back..  I take Aleve ..some days 2...and antidepressant .but no narcotics.    But I'm dancing with NED.    I wish you the best

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited June 2011

    Christy, I can't remember, but how many other AI's have you tried?? My Onc did say if I had trouble with Arimidex we could try another to see if one was better than the other. Thankfully I am doing well on Arimidex. Maybe even switching to Tamoxifen may be an option. I certainly think that this is no way to live your life.

    I really hope you can get something that works for you. 

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  • Latte
    Latte Member Posts: 1,072
    edited June 2011

    hi christy - i've heard that quite a few people have problems on one AI, and switch to another one and are fine - so why don't you talk to your onc about trying a different one? Another option is to switch to tamoxifen - my onc tells me that the difference in effectiveness between tamox and AIs is negligible, and she wanted me to try tamox first because the SEs are easier, and it is easier on the bones too (I had an ooph, so I could take an AI, but am taking tamox)

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  • Gitane
    Gitane Member Posts: 1,885
    edited June 2011

    Christy,  I never took Aromasin.  Although I know it's very different in it's mechanism of action, I really don't understand the differences between the AI's.  I have been on Femara for over 5 years now.  The first 2 years on it I was really miserable physically and emotionally.  It affects so many aspects of our life!  Swelling and headaches are symptoms that you are wise to check out.  The joint, muscle, and bone pain are a lot more prevalent and serious than the doctors/pharma companies make public in my opinion.  I sincerely hope that your onc can investigate and come to a plan that will help you.  Some kind of endocrine therapy seems to be required for us, so we need to keep trying.

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited June 2011

    I'm so sorry you're having such a hard time with Aromasin.  I was put on it after having issues with  Arimidex so switching was the best thing for me.  I still have some SE's but it's much better than before.   I definetly think trying others is an option, that's what I would do...but I'm also a chicken and will not go without my AI.  Even if you can try others and get through the next year until you can retire...maybe that's an option. I hate it, dealing with this at 35 and I've been told I'll be on AI's at least 10 years, it's a hard life but what else do we do.  I hope you find relief with another, let us know how things go. 

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited July 2011

    It was a good visit with the onc yesterday.

    The brain MRI was clear.  No cancer, no brain.  Just as I suspected!

    He wants me to stay off the Aromasin for another week to see if the headaches disappear.  Both of us really believe its the Aromasin SE that is causing them.  Apparently it takes a couple of weeks to get the stuff out of your system.

    When I see him next Thursday I'm suppose to tell him whether I'm willing to try Tamoxifen instead.  I only had a BSO so I still have my uterus.  I've never had problems with blood clots.  I already have hot flashes so that is nothing new.  Right now taking a completely different type of hormonal drug sounds like a great idea.

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  • Gitane
    Gitane Member Posts: 1,885
    edited July 2011

    Hi Christy,  I really hope those headaches clear up in the next week or so.  They are such a drain on your energy and mood, I'm sure.  The brain MRI being clear is great.  No brain?  After chemo I've felt that way sometimes.  I don't know where I read it, but there were some issues somewhere about ILC and Tamoxifen.  I'll have to look through my piles of files to see what it was.  Maybe someone on the ILC board would remember.  Anyway,  I think trying a different hormonal is logical if it turns out the Aromasin is the problem.  Let us know what happens.  Hoping you feel much better very soon,  G.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited July 2011

    Christy....I tried then all....side effects on each were different for me....So as the other gals said, before you give up, try another AI or tamox...I endured for 3 1/2 years and quit.....QOL is much better off the AI's for me and 3 1/2 years had to provide benefit...All the best to you

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited July 2011

    Glad to hear the scan was clear.  Although I've only tried 2 I did notice they each had their own different SE's so, hopefully you can find one you can tolerate.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited July 2011

    Christy, so happy your MRI was clear. I think switching to Tamox might be the answer, I was on it for 3 months or so and had no real issues. Certainly worth a try.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited July 2011

    Thanks ladies.  I just have to remember to ask him about checking my CYP2D6 gene metabolizes it or not.

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  • Katarina
    Katarina Member Posts: 386
    edited July 2011

    Do any of the SE's you ladies experience impact your sex life as in negative libido or sexual dysfunction altogether?

    Chemo sure has had this affect on me and I'm now concerned it's not just during this phase. 

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited July 2011

    There has been a lot posted on that subject.  And the neat thing about these boards is that the women are totally frank about their problems and solutions.

    The last two that I remember in the stage III forum are:

    http://community.breastcancer.org/forum/67/topic/760787?page=1#idx_10


    http://community.breastcancer.org/forum/67/topic/759583?page=3#post_2084137

    And there is also a "MOJO" thread some place but I'm not sure which forum it is under.

    Personally I can't add anything to this topic.  Health issues slowed my DH down so sex was sporadic before.  Now, it's me.  I'm scared of it.  Not the right choice for many couples but it works for us.

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  • Katarina
    Katarina Member Posts: 386
    edited July 2011

    AnacortesGirl (Christy)--- your two years out today!! Congrats!!

    Hope things are going better with the AI SE's. 

    My onc told me yesterday that he was going to put me on Aromasin as my AI therapy. We are very similar in our cancer markers so I appreciate your share.

    Please keep us up to date on how you are coping and changes in AI's your making.   

    Hugs,

    Kat 

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited July 2011

    Goodness!  You noticed the date and I didn't!  Wow.  Two years.  It's a nice way to start my day - thanks!!

    It was a rough week but I think (both hands in the air - all fingers crossed) I might be turning a corner.  Still have a mild headache this morning but my thinking is clearer and the funk is easing.

    Looking back, the aromasin gave me major hot flashes, problems sleeping, swelling in hands and feet, joint pain (some days nothing - other days it really slowed me down) and the icing on the cake was that my feet become too sore to do any walking other than around the house.  It was like the tendons were tightening and wanting my feet to curl.

    But this all happened gradually and the first 6 months, except for the hot flashes, were pretty much trouble free.  I had been on 20 mg Paxil prior so we just continued that.  To take care of the hot flashes he put me on Neurontin.  One in the morn and one at night.  Trouble sleeping, even with the Paxil, so increase the Neurontin to two at night.  A few months later and things are starting to go downhill again with the sleeping and so we try 2 Paxil a day - doesn't do much - so back to 1 Paxil and 3 Neurontin at night.  That's were I was for the last two months before I hit my limit on the headaches and hand/feet pain.  Now I'm taking at least 1 Vicodin a day for the pain, sometimes two.

    So I see him and the plan is that I stop the Aromasin, wean myself off the Paxil (Paxil doesn't play well with tamoxifen), maybe cut down on the Neurotin if the hot flashes reduce as the Aromasin leaves my system.  Then I start back up on Tamox and Lexapro.  Effexor was the first choice but I had a face rash after taking that for a week once before so it's off the table.

    So this Tuesday I started the Tamox and Lexapro.  But I was an emotional wreck when I was in his office.  So we also added an appointment with a counselor next week.

    In the meantime, the funk, fuzzy thinking and headaches are driving me bonkers.  Last Sunday I was sitting here on the boards thinking that I really needed to get away from the PC and go take my shower.  Wait - my hair is wet. I already took it and I had no memory of it.  That really spooked me.  And I think my actions were spooking my DH, too. 

    So he gave me the OK to do whatever I wanted with the Neurontin depending on how my hot flashes were doing.  So I stopped it.  Zip - nada.  And because I stopped the Aromasin the hot flashes are no longer a problem.  No Neurontin has really improved the fuzzy thinking.

    But the headaches continued, just milder and slightly different than the original killer ones.  We have have a PA and parttime nurse at my company so I went to those guys to ask for some aspirin.  The nurse heard my story and she firmly believes it's the Paxil that is causing my remaining problems.  She tells me that she has seen people who need to wean themselves over the course of 10-12 weeks.  Literally down to taking a shaving off the pill for the last week.

    So right now I'm only taking Tamox, Lexapro, and Vit D.  We'll see if I can get past the last of the headaches and start getting back some energy again.  I also hope that I click with this counselor.  I just have a lot of stress right now with the med changes, guilt for alll the work I'm missing and trying to help my father/mother with their lives since dad has dementia and it's just about time to get him into memory care.

    I'm really tired of drugs and SEs!!

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  • Gitane
    Gitane Member Posts: 1,885
    edited July 2011

    First of all, congratulations on getting through 2 years, no small thing!  I'm glad that you are still O.K. and getting such good care from the pros. If only you could get back a decent quality of life.  Drugs can be a huge part of the problem instead of the solution.  I don't think anyone, even doctors, have a clue as to what these drugs can do to us.  When we are dealing with major, major stresses, like a parent with dementia, headaches and SE's, our own hormones being all over the place, sleep disturbances, etc., etc., etc.  we feel like our world is a mess.  At least I have felt that way.  You are going to have to give yourself all the compassion, tenderness, and care you need.  I hope the counselor is wonderful and can help.  Don't feel guilty about things, don't be hard on yourself about anything, trust that your body will get through this, YOU will get through this.  Been there... still there but not as bad as before.  Hugs,   G.

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  • Gitane
    Gitane Member Posts: 1,885
    edited July 2011

    Hi Christy,  

    Do you remember back on July 2 I mentioned about reading an article that linked Tamoxifen and Lobular BC?  Well, here it is.  

    http://www.medicalnewstoday.com/releases/146945.php

    Small quotes from this article:

    "The researchers are trying to understand why some women with estrogen receptor-positive (ER+) invasive lobular breast cancer do not benefit as much from hormonal therapy such as tamoxifen when compared to women with other forms of ER+ breast cancer. Each year in the U.S., approximately 127,000 women develop ER+ breast cancer, and an increasing percentage of these are specifically diagnosed with invasive lobular breast cancer. "

    "This study continues a string of discoveries the researchers have made regarding tamoxifen resistance. They had earlier found that invasive lobular breast cancer has many more so-called "gamma" estrogen-related receptors than the typical "alpha" estrogen receptors that tamoxifen was designed to inhibit. "

    This is far from being in depth or long term research.  Just thought I'd share it with youl  Giant hugs,  G. 

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited July 2011

    Thanks Gitane!  Tomorrow I'll see if I can scout out the study behind the article.

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