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Summary


Chronic Myeloid Leukemia (CML) was the diagnosis I received on November 1, 2005. I went into the clinic three months earlier because of a tightness in my chest, left side, resulting even from a short walk out to my car. Then the week before diagnosis I went in because of a strange bulge in the left side of my abdomen, felt when lying in bed on my back. Turned out to be a rather large spleen, later measured at 11cm below the rib cage.

Since then, my family and I have been through some trying times. And as a Naval Officer stationed overseas in the UK and with family and friends living throughout the world, including the United States, United Kingdom, Ireland, Germany, Japan and Australia, I decided early on that it would be easier to update everyone via a blog than by email or phone.

I tried, and resisted, Gleevec. I also tried Sprycel but I proved intolerant to it because my counts dropped as soon as I took more than 50mg daily (standard is 100 to 140 mg daily). So I turned to a bone marrow transplant, which I underwent November 31, 2007 at the Fred Hutchinson Cancer Research Center in Seattle, WA. I have since been dealing with chronic graft versus host disease (GVHD) issues with my GI tract (resolved), eyes, mouth, and now my lungs. The lung problem is pretty bad as I hve been diagnosed with bronchial obliterans and now have only 42 percent lung function and am on oxygen a great deal of the time.

But not to fear; I am hanging in there, keeping my spirits up and continuing with my life. Through this blog, people have followed my treatment plans through success and failures, various types of medical appointments and procedures, my fluctuating counts, etc. Besides information detailing my own experiences, I also try to include general aspects of CML, various forms of treatment and the experiences of a stem cell transplant.

Sunday, May 30, 2010

Inpatient Rehab

Well I was discharged from Presbyterian/St. Lukes Hospital in Denver and admitted as an inpatient for physical rehabilitation on Friday. So I am no at The Center at Centennial in Colorado Springs. It is a very nice facility and everyone are so nice. Even though it is a holiday weekend I have still received physical and occupational therapy. The meal choices are very limited but the food tastes good. So I am happy with the facilities and am happy my wife doesn't have to drive so far to visit with me.

The blood cultures taken before I left Denver have come back positive so I am no on anti-biotics via IV once a day. Still no word on what it is but it must be some sort of infection. With blood cultures it takes time for them to grow, and with the holiday weekend I don't expect to hear anything more until Tuesday. But otherwise I feel fairly good and today's PT went well for me.

Thanks for your comments on my previous post. I appreciate just knowing someone is actually reading these blog updates, especially when there is often a long delay from me.

Take care everyone,

David

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Thursday, May 27, 2010

Yes, in the hospital again

Again I have lots to report but poor resources to write it. By resources I mean my eyes. I have my laptop here with WiFi but it is so difficult to read anything. But anyway, after four weeks out of my last stay in hospital I am once again back. I had just gotten over some sort of bug and had a scheduled appointment with my oncologist in Denver last Thursday. My muscles are wasting because of the high doses of steroids I have been taking. So while I have been here I have had all the different doctors and specialists see me, trying to fine tune my medications for my lungs, liver, kidneys, diabetes, high blood pressure and other c-gvhd issues not to mention.

I escaped a liver biopsy this morning when my lab report came back and the doctor halted the procedure. So the good news is that my liver function improved since yesterday and they want to continue monitoring. The same goes with high blood pressure and high blood sugars. We have made a lot of adjustments for the high blood pressure and it is starting to look pretty good.

Now, one of the main reasons I am here is because of the severe atrophy in my legs/arms. As I have said before the cause of this atrophy is the steroids. So one medication change has been to reduce the prednisone. I was on 60mg daily and am now on 40mg. Soon they will get me to as low as 20mg daily. The plan at the moment is to discharge me this Friday and admit me as an inpatient at a rehab facility in Colorado Springs. That is what I really need to help me get my strength back. I have no idea how long I will be there but it will also be so much better for my wife when visiting to drive down town Colorado Springs then Denver every day.

As for my eyes, the autologous serum tears didn't pan out after ten weeks. Prescription eye glasses won't work because of the c-gvhd on the outer surface of the eyes what they call steroid induced cataracts. I am scheduled for a cataract removal in June on the left eye because it is the worst. Even if it doesn't completely fix my vision, we are hoping I will see a great deal of improvement.

So that is it for now. As always, there is a comments link for you should you have any for me.

Take care,

David

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