Looking for your long term issues w bmx without recon

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  • Nkb
    Nkb Member Posts: 1,436
    edited November 2017

    mama- the bottom line is live your life - if you can. I wish there was more help in teaching that Since it is hard to do. Anyway given the prognosis i retired ( my mom died while i was on chemo so i was deeply grieving also) DH was already retired, i applied for social security early . And we traveled. Cuba, Grand Canyon river rafting, Europe for 6 weeks, Japan for 4 weeks( trekked on the Nakasendo ) Australia and New Zealand- did the Milford Sound trek and followed it with the Rute-burn, Peru, Chile, and this year Montreal and Paris. We freaked our financial planner out a bit ( he doesn’t know i have cancer) but, created lots of wonderful memories while feeling good.

    We all have dark clouds over our heads but ours are a bit bigger.

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  • MamaOz
    MamaOz Member Posts: 432
    edited November 2017

    thanks nkb

    I take Advil as well for the aches from arimidex

    Do you take anything to prevent bone loss?

    My dr wants me to take boniva but Im not doing it even though I have osteopenia

    I've been anemic since chemo which ended in April and short of breath on exertion and stair climbing so thats interesting...my dr doesnt seem concerned..

    ive been anemic for 9 months.. I ran it by my pcp just had blood work ip said my iron levels are ok. Its just the red cells have yet to recover... what other abnormalities?

    I started back to work last week and its ok ...not quite full time yet

    Snd leap. Thanks for yoir input as well


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  • Leapfrog
    Leapfrog Member Posts: 464
    edited November 2017

    That's a good point you make Nkb. The reason I have frequent (3 to 4 monthly) scans is because I'm on a trial. I don't experience scanxiety as some do, so it's easy for me to say "have a scan, no worries". I get that. Personally, I like to know what's going on but I respect everyone's right to do it their way.

    Some ladies on my trial have asked not to be told their TM results each month because it makes them anxious and I can understand that but I like to know that as well. Some of us do and some of us don't. We have to go with our own feelings and we either trust the oncologist or find another one. Mama if you trust your MO, it's your decision but, from what Nkb says I can understand Nkb's way of looking at it. I don't like to be too dogmatic but sometimes I find I am lately.

    I think, to be honest, 200mgm of Tramadol is doing things to my head at times and I'm more outspoken than I normally would be but my MO wants me to stay on it because otherwise I'm almost bedridden with pain.

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  • Nkb
    Nkb Member Posts: 1,436
    edited November 2017

    Mama-I had these symptoms 5 years later. It took me almost a year after chemo and radiation and bilateral mastectomy to get back to normal energy and lab work. Yoga really really helps with the arimidex side effects and the post radiation side effects. I highly recommend it. I did not have osteopenia so no meds were recommended for me. Later they did a study that showed that in high risk people taking Zometa might prevent bone mets- I did that- it may have staved them off for awhile-but, ultimately I did get bone mets (and further studies did not support taking the Zometa for prevention of bone mets.)

    Leap-I think you misinterpreted what I said - I was referring to why people don't have scans every 6 months after successful treatment to see if recurrent has happened. They are not recommended because they don't increase survival- just anxiety. That doesn't mean that you wouldn't catch something a little sooner if you scanned asymptomatic people- it just wouldn't change the long term survival and would cause a lot of anxiety. It has nothing to do with my choice- it has to do with evidence based medicine. This of course does not apply to people who are already stage 4-They get lots of scans.

    Mama if you are working that is great recovery!

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  • MamaOz
    MamaOz Member Posts: 432
    edited November 2017

    Thanks nkb

    It does feel good to be doing something normal again

    Very surreal though, after all the emotional and physical trauma of chemo, bmx, and radiation.. and now wahla! Im supposed to be fine..

    I still get tired easily and the arimidex is causing bone and joint pains but once Im moving around its not so bad yet

    My obgyn has me taking CBD oil each night I only take 2 drops which is very minimal , it helps me sleep and is supposed to have lots of other benefits (anxiety, pain, and even lessening cancer risk) if I took more than the 2 drops, so ill see...there is alot of data and research , he gave me ..

    But all in all your advise to live our lives fully is wise


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