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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 25, 2009

More Appointment Updates

Thursday I went to behavioral health on base and the doctor and I agreed to increase my Lexapro from 20 to 30 mg daily and to increase Ativan to 2mg at night to help me sleep and for anxiety issues. I have been feeling pretty good overall but I am getting a bit edgy again, most likely because of the news of lung disease, etc.

So I also saw the pulmonologist here in the Springs. My pulmonary function tests were the same as my last visit to his office, indicating my lung capacity is still 43% of full capacity. The doctor is happy I have not gotten worse but said that level is still indication for concern. He said I am too healthy for a lung transplant now but he believes it is a matter of time before it would be necessary. I guess I will find out more next Friday when I go to National Jewish Health to see the lung transplant specialist.

Oh, and the best thing is that I am now tapering my prednisone from 30mg daily to 20mg daily. Those levels are still much higher than what the human body naturally produces but less is good because it affects my mood, body weight, and who knows what else.

Posted by David Cox

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4 comments:

Rhonda Radliff said...

David,
I think of you often... every time I take my Sprycel! Twice a day the faces and names of my CML (or former CML) buddies fly through me as I take the chemo. I so apprecaite you keeping up with your blog. Reminds me that I need to do the same. While my harvest and hold was denied, it seems 'they' may have found a match for me. We will know in 3 weeks. As of now the meds are working, but I remain concerned I don't have alterntives since none of my family is a match.

You are an inspiration and trust you will find peace and comfort during the struggle for some more 'AIR.' May your lungs repair and grow as needed to support you well. Good luck.

peace,
Rhonda
dx Nov 2007
Sprycel

July 28, 2009 9:51:00 AM PDT
Anonymous said...

David,

I hope the meds help and maybe the visit from us will help your mood even more. We can't wait to see you and the family. We love and miss you very much.

Lisa

July 28, 2009 6:29:00 PM PDT
Anonymous said...

Wow, quick taper on the pred!! Nice work. LIterally the Hutch had me on 60MG since Jan and only now am I allowed to go to 25 every othoer day- it has been 8 months!! and as you know the side effects seem to compound with time but I am not messing with the Hutch and their deep and long knowledge of GVHD.

You are such a brave warrior and happy to hear things are holding steady. It brings time and more years of medical advancement. You will be fine but the waiting must be so hard.

I hear ya on the Ativan! Right there with you~]Lea

July 29, 2009 10:17:00 AM PDT
Dennis Pyritz, RN said...

Great Blog! You are a credit to the cancer blogging community. I have added you to my blogroll, “Cancer Blog Links” with almost 500 other cancer blogs at www.beingcancer.net, a cancer networking site featuring a cancer book club, guest blogs, cancer resources and more. Please stop by and visit. If you like the site, please consider adding Being Cancer to your blogroll.
Take care, Dennis

August 7, 2009 4:13:00 PM PDT

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