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Severe neutropenia
Hello Chris,
Please hang in there. Your wife needs you and so does the rest of your family. I just finished reading the thread as I felt connected to what your wife and you are going through. I can definitely relate to some of this from my end. I don't know how my story will help but I too have had pretty low counts of neutrophils since July '12 (mostly fluctuating b/w 200 and 600). But the counts have been essentially at or near 0 for the last two months and I have been struggling with multiple hospital visits.
The real difference that is so obvious here is that your wife hasn't been successfully diagnosed with anything concrete so far, unless I missed it. I'm sure that's one single factor making all this even more difficult since proper treatment options can't be reliably thought of and carried out.
I was diagnosed with Cyclic Neutropenia in '01 and had been taking the G-CSF Neulasta shots every 21 to 18 days which worked out great overall all these time as a routine - until March or April '12 when the BM stopped responding to them and I was soon diagnosed with T-Cell LGL Leukemia. After my system was "reset" or so to speak through a therapy of ATG-horse (anti-thymocyte globulin), I was given a few neupogen shots, prednisone 60mg, and cyclosporin 400mg course over about 3 weeks while in the hospital, the neutrophils finally returned slowly and reached a high range of 6 or so.
But the neuts once again phased out a few weeks later as the overproducing T-Cell lymphs again took over the BM suppressing the neuts - autoimmune nature of the disease. I have been battling the disease and the conditions since then as now I'm on my 3rd round of oral chemo - cytoxan (cyclophosphamide) 100mg daily after cyclosporin 400mg and MTX (methotrexate) 20mg weekly didn't work. I'm still on prednisone though tapering off once again. Fingers crossed that my BM responds with reduced # of those T-Cell LGL's, giving neuts a chance to survive and help rebuild my immune system to some reliable level.
It seems that your wife and I are in the same boat as far as the ANC is concerned - essentially 0. The difference is that I'm given a diagnosis (or so they say) and have targeted treatment options with the two first line of treatments not working in my favor so far. I just don't get it that why your wife's docs are so clueless?? Maybe you need to reach out and consult with a completely new set of oncologists/hematologists - including those in the US perhaps.
Please stay strong and more importantly, stay hopeful, upbeat and positive. I personally know that saying or thinking in that manner is easier than actually practicing it in real...but we have to push harder and keep the faith. I will pray for your wife and for you. Wishing you all the best!
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