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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.

Saturday, July 18, 2009

Lung Specialist Consultation Delayed

Just to give you a quick update... I was scheduled to see a lung transplant specialist yesterday for some tests and consultation at National Jewish Health in Denver; however, the doctor had a family emergency so my appointment has been delayed. We are disappointed because it is not easy NOT KNOWING. I mean, I know my lungs are not perfect. As of the last pulmonary appointment several weeks ago I was told my lung function was improved but still serious. But is that "serious, you will be on oxygen for life", or "serious, you have less than two years on those lungs", or "its a miracle, your lungs are getting better."

Overall, I have been feeling pretty good, with some bad days thrown in there periodically. Yesterday I felt miserable but today I feel good. The prednisone steroids, although not good for my bones, have certainly improved my appetite. I now weigh 160 pounds, I have the round prednisone face, and I look pregnant (due in a couple of months). It hit me very quickly by surprise but I am now trying to tackle it. I try to walk at least 30 minutes each day, started stomach crunches, and have ditched the pound bags of spicy drops I have been so fond of. I have even backed off of my nightly dose of ice cream.

I guess that is about it for my update. I have several appointments next week so maybe another update next weekend.

David

Posted by David Cox

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3 comments:

Anonymous said...

Thanks for the update David. We have been thinking about you and the worst is not knowing with all parts of this journey and I can not even fathom what you are dealing with.
The Hutch told me 100 grams of protein a day for a minimum muscle loss and the ability to build good muscle. I too have a Buddha Belly, the huge football player neck and the WEIRD notch that makes me look like a humpback that bulges out on my back.
Not pretty but keeping the GVHD under control:)!
Please keep on going- we are all blown away with your guts, determination, and proactive approach. You will get through this too- it might be another tough battle but you will win the war.
Lea

July 18, 2009 6:56:00 PM PDT
Anonymous said...

Good luck this week with all your appts David. I too think of you often/check your blog and hope you're doing well.

Take care of yourself!! Stephanie Parry

July 18, 2009 9:37:00 PM PDT
Anonymous said...

Glad to hear of the weight gain (since you were under 150lbs when I saw you last) but sorry you have had to give up the nightly ice cream. We are looking forward to seeing you in August. Until then take care and know that we love you very much.

Lisa

July 20, 2009 5:04:00 PM PDT

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