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Some of my lab results are showing an adverse trend. My doc wants me to have a second BMB to rule out the possibility of a mutation of my CML. I've been on 300MG Gleevec for twenty-eight months.

I'm becoming very superstitious about seeing my new doctor. She belongs to the same practice as before just a closer location. I saw her for the first time in January and managed to slip off a step breaking my right leg and ankle that evening. Now, when I saw her yesterday, she wants me to have another BMB to check my whacko blood. Will the fun never stop?

  1. Sometimes I think "will the fun never stop?" is the official slogan of having cancer. Even years later, sometimes if a pain is in exactly the right (wrong) place it starts to make you wonder. It really is a lifetime thing, this cancer. Just know you're not alone! Let us know if there's anything we can do from here. Keep on keepin' on, DPM

    1. Ouch!! That was a terrible fall! I hope that you are healing well.
      When I was diagnosed in 2011 the first line of defence was Gleevec. I was only able to tolerate that treatment for a couple of years before my numbers changed as well. My oncologist used BCR-ABL blood tests and switched me to Sprycel. The tests showed a terrible dip in my levels within a few years and I was switched to Nilotinib. I was able to get my numbers back up in three months and developed neuropathy. Now I am back on Sprycel.
      I wish I could say that there is one treatment that is totally reliable, but I haven't had that experience. It's a rollercoaster ride. Hang on tight.

      1. Thank you Daniel and Maria for your kind thoughts and encouragement. I'm probably a hand full of weeks before I know what my status might be. I've read here and elsewhere that Gleevec does fail after a while. I don't relish the thought of seeming of the medication and start anew. I'll keep y'all posted. Thanks, again.

        1. Oh my goodness, that's unfortunate to hear. I hope you are recovering well from the broken leg and ankle. I'm sure having another BMB was not something you wanted to hear. We will be keeping you in our thoughts, please keep us updated. Wishing you all the best, Doreen (Team Member)

      2. Thank you so much, Doreen. The leg and ankle are almost completely healed. Just a few more P.T. sessions until I'm released back to normality. It'll just take a little more time.
        I'm scheduled for the BMB early next month. The thing that perturbs me is that I brought up the anomalies and addressed them to the doctor. Rather disconcerting, I think.
        I'll e keep y'all posted as events transpire.
        Thanks again for your kind thoughts.

        1. Please know we'll be keeping you in our thoughts for your continued recovery as well as the upcoming BMB. All my best, Doreen (Team Member)

        2. Hi from another Ronni! I can't recite much poetry except for a few lines here and there, and the oft-quoted opening lines from "The Second Coming," by William Butler Yeats, are some of them. They seem pertinent to the challenges that many of us face and that you are facing now. The poem, which he wrote in 1919, begins, "Turning and turning in the widening gyre/ The falcon cannot hear the falconer;/Things fall apart; the centre cannot hold...." You can read it and listen to it on The Poetry Foundation's website. Specifically, the part about "things fall apart, the center cannot hold," applies to the feeling when a bunch of stuff happens at once. I'm sure there is a lot of analysis about the falcon not hearing the falconer (maybe it feels lost?) and turning in the widening gyre (dizzying?) , but for our purposes, let's stick with the other lines. Right before I was scheduled to go into the cancer center for a second round of chemo (for AML). I fell on my shoulder and separated it when running for a tennis ball. After my first round, I had been sent home with my Hickman catheter implanted near my collarbone. These have two long tubes extending from them. I tucked the tubes into my sports bar and went off to play a game of doubles. As I made a dash for the out-of-reach ball, I could feel myself losing my balance. I am told that the right way to fall is to try to make a little ball out of yourself and to "drop and roll." Instead, I extended my arm towards the ground, in an effort to protect the catheter. It was an awkward fall (at least not on the catheter) . One of my friends rushed me to the ER. My shoulder was separated. There was nothing to do for it except to put it in a sling. It hurt A LOT. When I got to the cancer center, my doctor asked, "What have you done NOW?" I don't know how you feel, but I felt like things were really falling apart. Well, that was 20 years and many bone marrow biopsies ago. Things did not fall apart. I hope this long-winded reply resonates with you and helps you a bit. It often FEELS like things are falling apart when they are not. ALSO, I wanted to say that I had more bone marrow biopsies than I can count, and though not pleasant, they were mercifully brief . Here's something I wrote about bone marrow biopsies: Best of luck, and like the others said, please keep us posted. There is solace in community and in this one particular. Ronni ( team member)

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