Friday, October 12, 2012

JoAnne - Closing Chapters - Journal Article

Among many accomplishments listed on JoAnne's curriculum vitae was her status as a challenging clinical case replete with rare complications. We have discussed them as they occurred during her treatments. One particular experience merited a journal publication.

Many of you are familiar with the world of medical and scientific journals. I spent considerable time poring over cardiac surgery literature during my work career. Researchers and physicians share their experiences and experimentation with their colleagues through these journals. It is always a source of pride when your work is accepted and published.

In JoAnne's case, she experienced a Richter's Transformation at a very late stage. Her CLL cells were almost immeasurable when evidence appeared that her cells had transformed into an aggressive Large B Cell lymphoma. It was fortunate that this event was diagnosed in its very earliest stages as it is usually fatal in the shorter term. Complicating the problem however, was JoAnne's allergy to the first line of treatment, Rituximab. Ahh! But a relatively new monoclonal antibody had become available. Ofatumumab was similar in design to Rituximab except it was formulated from human proteins while the latter came from mouse proteins. I could have told anyone that JoAnne was allergic to mice.

JoAnne and I became the official pronunciation guides for Ofa as this may have been its first experience at the University. Nurses would come into the room to administer the drug. "Let's see. It says here you are supposed to get O........Ofa......Ofat......Ofa tu.......whatever." We would pronounce it for them and in many cases that still didn't work. Once you get the hang of it, the word just rolls off the  tongue and is actually fun to say.

Long story short (too late) JoAnne underwent an 8 week regimen of Ofatumumab and it nailed the LBCL. Quite miraculous and a cause for great optimism. Unfortunately, the story could not end there. Immunosuppression had to be stopped to administer Ofa. That allowed graft versus host disease to take hold. High dose anti-inflammatories such as prednisone were required to treat gvhd. They further suppress the immune response which allowed infection to settle in ultimately leading to JoJo's demise. I write those words and still have a flash of a hard time believing she is gone. 

It was all a rather rare experience that was accepted for publication. Pretty cool. I have included jpg's of the article in this post, will post them in Picasa, and will post the pdf in Dropbox. The last of these options is the clearest and easiest to read. I will tell you in advance that this is not easy information to wade through unless you are a hematologist. Don't get too hung up in the details, but there might be a quiz afterwards.

In their closing comments, the authors indicate that outcomes for stem cell transplant patients are improved when patients are referred for transplant while still relatively healthy as opposed to a last resort treatment. In other words, if JoAnne had opted for transplant earlier, she may have had a better outcome.

Try getting your head around that as her surviving spouse. I won't lie. It took me awhile. Fortunately, I have had some experience with similar challenges in cardiac surgery. In this case, her transplant physician, Dr. Ustun would have wanted to see her earlier so it would improve her transplant outcome. On the other hand, her primary oncologist, Dr. Wilkowske has had CLL patients of relatively good health who went off to transplant only to die early in the process. It is two differing perspectives on the same set of facts, and there is no easy or definitive answer. Medicine is often more art than science.  In my heart, I know all involved were pulling hard in the same direction to restore JoAnne's health. It is deeply regrettable that we couldn't be fairly rewarded.   

Have at it!






And The Beast Goes On


2 comments:

  1. Pretty surreal to have JoAnne's life described from this perspective. It affirms her incredible strength and courage in the face of overwelming adversity. Even her brilliant and determined healthcare team couldn't change the outcome.

    You are spot on about the expressed opinion on earlier transplant. If this were accepted best practice for CLL, there would have been one unified recommendation for treatment. Team Petersen would have been all over that in a hearbeat.

    So there seems to be no definitive answers, just more questions. I heartily pray that the quest for the knowledge to conquer this foe continues.

    Love to all Team Petersen-

    Denise

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  2. I think Denise's statements are well said. So much effort and determination by all parties involved and especially the patient, JoAnne. Thanks for sharing this-the article itself as well as your expressions of wondering and grief.

    Still praying,

    Kerry Paulson

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