An Important FDA Safety Announcement for my Donor Stem Cell Transplant Brothers and Sisters

FDA warns about increased risk of cancer relapse with long-term use of azithromycin (Zithromax, Zmax) antibiotic after donor stem cell transplant

The French study which the FDA based a recent safety announcement on had to be discontinued after two years because the rate of the return of cancer and even death was too high in those patients with cancers of the blood or lymph nodes who undergo a donor stem cell transplant and were taking the antibiotic azithromycin (Zithromax, Zmax) long term to prevent a certain inflammatory lung condition [LUNG GVHD/BOS].

Continue reading “An Important FDA Safety Announcement for my Donor Stem Cell Transplant Brothers and Sisters”

Cancer isn't pink

HOW NOT TO DIE: In 13 Easy Steps

On this day five years ago, I received the news that a recent lung biopsy showed that my lungs were inflicted with a severe form of graft versus host disease (GVHD) called bronchiolitis obliterans syndrome (BOS). BOS, I came to find out, was a known but uncommon side-effect resulting from a bone marrow transplant (for leukemia) that I had had earlier in the year. And by severe I was told it meant the BOS was incurable, non-reversible, and, in most cases, aggressively fatal. I was also told — because I had asked and insisted on an answer — that, according to a National Institutes of Health (NIH) study of the time, BOS had only a 13%, five-year survival rate. In other words, there was an 87% chance that within five years I would be dead.

Well, it’s been five years and here I am – a newly minted Thirteen Percenter.

Can a brother get a “Hell yeah?”

Hell yeah!

Anyway… at my most recent appointment with my oncologist, in addition to his standard declaration whenever he sees me of, “So, I see you’re still alive,” he also declared that my present condition may just be a miracle of sorts because it appears that my incurable BOS may have actually been cured… somehow.

I don’t think I would be overstating if I said that, because of all my goings on these past five years – goings on such as leukemia, GVHD (and not just of the lungs, but also of the eyes, liver, and intestines), prednisone side-effects, cytomegalovirus (CMV), and heart failure to name a few – I think I’ve learned a thing or two about life in general and living it in particular.

Now, if you search around this site, I’m pretty sure you will find that much of my writing, mostly encapsulated in my haiku, reflects a lot of the insights and learning I’ve garnered from these goings on. However, just because I like you all so much and don’t want you to have try to sift through this site for days on end in an effort to discover these insights and learning, and because short, pithy lists are all the rage these days, I will identify for you the top thirteen things I learned about how to not only not die, but mostly about how to best live your life filled with happiness and meaning, regardless whether death is looking you directly in the face or not.

Cool?

Okay, so here we go…

Continue reading “HOW NOT TO DIE: In 13 Easy Steps”

If You’re Here You Must Be Sick…

(OR CARE FOR SOMEONE WHO IS) I’d like to think that one or two of my three regular visitors (one of whom is me) come to this site to gain a deeper understanding of my creative writing by exploring my short stories, and poetry, and my insightful and sometimes witty flash fiction, and, most importantly, to buy my books. Yeah, that’s what I’d like to think. However, the reality is far from it. The unfortunate truth is that, by far, most people who visit this site do so because they are seeking out information about my diseases, past and present. … Continue reading If You’re Here You Must Be Sick…

Lung GVHD by Any Other Name

As I’ve tweeted in the past, I’ve contracted both acute and chronic Lung Graft Versus Host Disease as a result of my April 2010, Bone Marrow Transplant. For clarity’s sake, or perhaps to confuse things even more, I think it is important to be more specific in naming my lung disease. In my lab reports and in discussions with my doctors, in addition to Lung GVHD, it is referred to by several different names: Chronic Bronchiolitis; Constrictive Bronchiolitis; Focal Follicular Bronchitis/Bronchiolitis; but the name I will refer to it as is Bronchiolitis Obliterans, or BO. According to the doctors, it … Continue reading Lung GVHD by Any Other Name