AI vacation anyone?

Teach76
Teach76 Member Posts: 354 Member
in Breast Cancer #1

I have been on an AI (first Armidex, then Femara) for a little over a year now.  Since school started back in September I have had severe pain in my hands and feet.  I would say that it feels more tendon than bone as it is on the top of both extremities.

i decided to take a vacation from the Femara until after my daughter's wedding (10/20).  I feel I need to determine for myself if my pain is arthritis related or drug related.  I've read that some late effects from chemo may include peripheral neuropathy.  Onco said this far out it could not be from the chemo.

i just can not stand the pain right now.  The beginning of the school year is so hectic, and I am tired of waking up at 3am because my hands hurt!

so my question is . . . Has anyone else taken a hiatis from their AI, and were there any difficulties when you returned to therapy?

thanks!

Kathy

Comments

  • HapB
    HapB Member Posts: 527
    #2
    B Natural

    I don't agree with your doctor about the post chemo peripheral neuropathy.  The last time i had chemo, 6 years ago, about a year and a half after, I developed the most painful neuropathy in my feet. It lasted for about 3 years and it was clearly chemo related. Nothing really helped me, it would keep me up at night and it got to the point that I would sleep with my hard bottomed slippers on because ot seemed to help with the cramping. 

    I just started Femara last week. Did you experience hair loss with Femara? I am concerned because I have no new growth 4 months pfc and I fear that Femara will just make the problem worse. 

  • Teach76
    Teach76 Member Posts: 354 Member
    #3
    Thanks, Hap

    When I first started Femara my hair was ok.  After about 6 months I began to notice it thinning .  Male pattern baldness is listed as a SE.  Several hairdressers suggested I add Biotin to my regiment.  I am not convinced that it will do the trick, but I do not seem to be losing any more.  I took myself off for the next month hoping my hair will recover a little for my daughter's wedding.

    initially my hair took a good 2/3 months to start coming in.  The crown was the last area to fill in.

    blessings!

    Kathy

  • Apaugh
    Apaugh Member Posts: 850 Member
    #4
    all my treatents cause me bone and muscle pain

    All over my body.  I am done now except for the 5 yr. pill Arimidex.   I hate it and dont know what to do.   I am tired of feeling like someone unplugged me all the time and feeling like someone is breaking my bones.   30 days after the last Herceptin treatment.   My hair has come back and it looks awful and it is thinner on top.  

    I hate side effects of cancer treatment so bad.

     

  • tufi000
    tufi000 Member Posts: 745 Member
    #5
    AI?

    I prefer robots with AI as in Artificial Intelligence.  Then we wouldn't have these issues

    BYW, I have been on Arimidex for 13 yrs now. First few months had joint pain which very gradually ebbed over 2yrs but wasn't bad after first months. I know you can't stop and start these meds suddenly. Your body is used to them and will fight when you stop and start.

    Wish you all the best.

  • Kats2
    Kats2 Member Posts: 126
    #6
    Is Arimidex working for you?

    tuffi000,

    Being on Arimidex for 13 years, I was wondering if you're being monitored by bloodwork or periodic scans? When I was on it and also Tamoxifen, I never had follow-up tests. What state do you live in? And are you happy with your Oncologist and the care you're getting?

    Thanks for any reply you'd like to share.    Kats2

     

     

     

  • tufi000
    tufi000 Member Posts: 745 Member
    edited September 2017 #7
    Hi Katz

    My hospital is referred to as the Sloan Kettering of the Midwest.  The Siteman Cancer Center/Barnes Jewish Hospital, St Louis. I live SW of the city where the trees are. I have a team of docs who communicate with each other and they have all adopted me. 

    As far as Arimidex is concerned, the most important monitoring is of your bones because Arimidex destroys them.  I am also monitored once or twice a year for the various issues I have so no apprehension there at all. I get MRI's for my brain, bloodwork for everyone as they all want different tests, Bone scans, sometimes a CT. It's neverending but I try to schedule them all in one month together so I don't have appts every month. I took Actonel for the bone stuff but you can only take it for 10 years so I am up a creek on that due to the type of BC etc, there is no other med I can take.

    Hope this answers you.

    Sherry

  • Teach76
    Teach76 Member Posts: 354 Member
    #8
    One and done

    Wouldn't it be wonderful to just have a day once a year for all the tests and scans we need?  Then results could be available for whomever needs to see them.  Having just done my "tour" this summer with all of my docs, I still need to take time from work for more tests because either everyone is on a different schedule or insurance is driving the bus.  I tried to schedule Dexascan and mammogram/ultrasound on my days off from school - no can do because the tests need to be one year + 1 day.  How ridiculous is this?  I suppose in one day suddenly my body will go through a monumental change that would not have been detected on day 365!

    it would be wonderful if someone asked patients how best to reform healthcare!

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