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    kayebee wrote on mdny's wall

    Hi mdny, I hope you had a nice Mother's Day. It must have been terrible to find out you were misdiagnosed for years. I'm curious about what you were diagnosed with and being treated. I had not gone to the doctor for over 10 years before I was dx'd. I had put myself on a fairly good diet (most of the time), walked every day and stayed very active, so I was shocked when I was told I had cancer, especially since my only complaint was tiring easily, which I was telling myself was due to getting older. It took about a year and a half on the Gleevec to reach PCRU, but I have been maintaining that for about two years and doing okay, but I really do miss my prior energetic self! BTW I raised my 2 kids as a single parent, which was not easy when I was relatively healthy, so I know it must be super hard when you are dealing with CML and single parenting.

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    kayebee wrote on mdny's wall

    Hi mdny, It must be really hard to have CML at such a young age and with young children, but the upside is you will most certainly be here to celebrate when the cure is found. I hope you have lots of home support. Are the Latham support groups specific to CML and/or blood cancers or are they generic for all cancers?

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      mdny

      Hi Kayebee, I am a single mom but luckily my children are really helpful. I have a couple of friends that have helped out when I have had surgeries as I don't have any family in the area. We always make it work :) The Latham support groups are specific to blood cancers. I will let you know the next time I get an email from them. You can also google the Hope Club in Latham, they have lots of outlets for patients. I was misdiagnosed for years and am glad to finally be getting better- how are doing with your treatment? I hope you have home support.

      over 2 years ago
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    kayebee wrote on mdny's wall

    Hi mdny, I was diagnosed in December 2010 and have been on Gleevec ever since. I reached PCRU in the spring of 2012 and basically have maintained since. Have you joined any other online CML groups? The NCMLS has a wealth of information and support for CMLers.

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      mdny

      Hi kayebee, I was diagnosed in December 2011 and have been maintained since then. I joined an online CML group via facebook but it was pretty depressing rather than helpful so after a few months I stopped. Yes they are a wealth of information thank you. I go to NYOH in Latham and they have free support groups but I never get a chance to go as my children are young. These groups are once a month if you are interested.

      over 2 years ago
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    kayebee wrote on mdny's wall

    Hi mdny, I'm confused by your shared experience. You said you finished chemo 2 years ago. Was that for a cancer other than CML? What treatment are you on for CML and how is that working for you?

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      mdny

      Hi kaybee, the chemo was for the CML I just didn't finish filling out my other experiences. I take Tasigna everyday and that has been working well to keep my numbers in check- what treatment are you on and how is that working out?

      over 2 years ago
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