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Mostly Good News–And Guilt!

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Mostly Good News–And Guilt!

Good news and bad news from yesterday’s oncology appointment. First, the bad news. Two months ago, the pathologist noted he saw what might be just a shadow–a trace–of monoclonal protein in my blood work. In other words, after eighteen months, my myeloma might be back. Thursday I learned this was indeed the case. This time a different pathologist, Dr. Pamela Steele, interpreted the results. Her finding was similar and more definitive than the report from last month:

“Faint IgG kappa paraprotein remains visible in far gamma region. M-spike too small to accurately quantitate.”

OK. I understand a patient’s myeloma rarely, if ever completely goes away. Complete response, remission—whatever you call it—is only an allusion. You know that. You understand that. But knowing and understanding isn’t always the same as hearing and seeing the report: It’s official—my myeloma is back.

Now the good news—No, the very good news! My M-spike is still not measurable. Good news. The velocity of my myeloma is very, very slow. More good news. At this rate it will be months or years until we even need to consider changing treatment regimens.

For now, Dr. Anderson and I agreed we should keep doing what’s working—even if it isn’t working quite as well as it once did—10 mg of Revlimid for two weeks and then rest for two weeks each month. Then, if and when the M-spike becomes measurable we can try Velcade, or I can join a study featuring Pomalidamide or Carfilzomib.

Great! Wonderful! Outstanding! So why do I feel…guilty? I’m OK with the inevitability of my myeloma—I came to grips with that years ago. All of the extra time I can now use to help cancer patients—to write, to speak to support groups, to work with the IMF and drug companies to help improve patient’s access to care and their quality of life—I feel so blessed!

I also feel guilty. Guilty about sharing my encouraging news, knowing some of you reading this are not as fortunate. You, or someone you know, may not be so lucky. The Revlimid or Velcade may no longer be working. A stem cell transplant may be failing. You may be running out of options. I’m a “glass is half full” kind of guy. But sometimes, there is a hole in the bottom of the glass.

For most of you, my good news is your good news! New, novel therapies are remarkably effective for most of us. I just can’t stop thinking about those of you who aren’t responding well to treatment or have run out of options. Try to remember you aren’t forgotten!

Feel good and keep smiling everyone! Pat