And miles to go............

Dead Soldiers in The Battle of CLL

Today was JoAnne's 6 month follow-up meeting with Dr. Ustun to review the status of her May 17th stem cell transplant. In a perfect world, she would have 100% engraftment of the donor cells with no evidence of Chronic Lymphocytic Leukemia (CLL) in her bone marrow. Little in this world is perfect however, and today's news was a mixed bag.

Good news: The CLL cells in her bone marrow were measured at .1% or 1 in 1000 cells of the bone marrow sample. Having started at nearly 90%, this is quite remarkable. The level is so low it exceeds the accuracy of the test method, and could be considered CLL free except that the doctors only accept absolute zero before declaring such. There is every reason to believe the number will reach 0 in the coming weeks/months. Also noted in the PETscan was continued significant shrinkage of the swollen lymph nodes throughout JoJo's body. Their metabolic activity also continued to decrease. In other words, they aren't buzzing with cancer activity like they used to. This is a great sign that the CLL is in retreat. Her bone marrow is now 100% comprised of donor cells indicating complete engraftment. Mission accomplished in this regard.

Bad news: Also noted in the bone marrow biopsy was a very small colony of large B cell lymphoma. Depending on who you read, 2-12% of CLL patients experience Richter's Transformation. Just lucky I guess. The CLL morphs into an aggressive large B cell lymphoma. It is one of many risks that CLL patients live with. Particularly frustrating is the fact that JoJo was almost completely free of CLL. In it's last breaths, it seems to have lashed out and left her in a very vulnerable state. Sometimes Richter's is triggered by the presence of the Epstein-Barr Virus that revs up in immune compromised patients. Other times it is simply due to the CLL cells transforming on their own. Dr. Ustun believes the latter, although we are not sure what difference it makes.

Good news: The transformation has been identified in its earliest moments. In most cases, it is only recognized via symptoms which means the lymphoma has already become systemic. That is a bad bad thing. Signs suggest that it is only in the bone marrow and can still be successfully treated with the monoclonal antibody, Rituxan.

Bad news: JoJo underwent her first chemo treatments for CLL in early 2000. The standard of care at the time and still used frequently is fludarabine. She tolerated that well and achieved a good result in turning back the CLL. Rituxan, which has now become an effective, proven and preferred treatment option, was just coming on line. Her doctor suggested that we try it "......just to see if we can get some additional benefit. It certainly can't hurt." Famous last words. In short, JoJo developed a serious allergic reaction and suffered mightily for the better of 8 months while they tried to figure out what was going on. They finally attributed it to the Rituxan. It has been off the table as a treatment option for her ever since, as there are reasons to believe that her lungs and airway were permanently affected and sensitized. Under the current circumstances, it must be considered as a treatment.

Good news: Dr. Ustun is going to present her case to the staff this afternoon. Option 1 is to admit her to the hospital and administer the Rituxan while they watch her closely. With any luck, they can fill her up, control any side effects and then send her home the next day. Early indications are that it would be once a week over 4 weeks.

Bad news: There is an alternative antibody, Ofatumumab, that may be effective in this case, but it is prohibitively expensive and the insurance company will not automatically approve it.

Good news: Either through appeal or by demonstrating that JoJo is indeed, still allergic to Rituxan, use of the new antibody may be possible. The side effects could prove to be less. Let's not get on the insurance company just yet. They have been a godsend throughout this process and more than reasonable in working with the doctors.

Bad news: There is a third option via a targeted therapy approach, but it is only an experimental protocol offered at Sloan-Kettering in New York. Let's not get into that just yet.

So  $!/*&<)%*@$?" close!  We are trying to process this new information. Give it some time to sink in, and I could become one ticked off amigo. In our minds, accurate or not, if those last little CLL cells had disappeared quicker, JoJo may have been out of the woods. Now she is left with more uncertainty and fear. NOT FAIR!  I'll be honest. Our optimism has been growing.  We were looking forward to a grand holiday season that would include a trip to Grand Forks for Wade's graduation from UND with his degree in commercial aviation. The last of 4 kids out of college. Yippee! Then home for the holidays and extra reasons to celebrate with family and friends. JoJo has been feeling better, although the last several days have been anxiety provoking for her as she awaited today's meeting. Perhaps she sensed something the rest of us could not.  Jebus! She deserves a break!

I can't presume to describe how JoJo feels. She is disheartened, discouraged and sad. But there is hope along with the fear. When the time is right, she will be ready and in the proper frame of mind. Because that's who JoJo is. She has enduring faith and boundless hope. Things will move quickly from today and she could be in the hospital as early as tomorrow for treatment. Urgency is the byline. Catch those large B cells before they proliferate.

Lest my posts have lulled you into complacency, I will take this time to implore those who care deeply about JoJo to summon up your best prayers and thoughts. There are few people we know who deserve and need them more. God's blessings and keep the faith.

Cancer Sucks