I'm at such a loss...

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  • jobur
    jobur Member Posts: 726
    edited September 2016

    Dear Rose,

    My mo is wonderful, but acts as if there are no significant se's from any of our drugs. When I mention (read complain about, ha ha!) anything I suspect is an se she truly looks surprised.

    I hope you do go to Mayo and are able to get some answers. I have heard great things about the clinic in Rochester, MN.  Are all the infusions for CIDP 5 hours? Yuck! Are you noticing any improvement? I'm not sure going off your current regime for 5 weeks would tell you anything. We can go down hill fast, but recovery always takes much more time.

    Continuing to think of you and hope you find the right treatment for whatever this is soon! Please keep us posted.

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited September 2016

    Oh, Rose! What a perplexing response from your MO. But it may not be a bad idea to switch to Gemzar or even tamoxifen. Ibrance is such a new drug. Maybe they have more experience with it at Mayo. Are you seeing a neurologist or a rheumatologist? I would probably go with the latter if you are having an autoimmune response. I'm just stabbing in the dark here. Hope you get answers soon and the next infusion works as it should.

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  • Mab60
    Mab60 Member Posts: 487
    edited January 2017

    hello everyone,

    I have not heard from rose (steelrose) since her last post around thanksgiving. She is such a sweetheart. I followed her over to the lepromets thread staying in touch with her. Has anyone by chance received any pm from her? A little concerned that she has been quiet. Any news from anyone about sweet rose?

    Mary Anne


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