Wednesday, October 24, 2012

an answer at last

We saw Dr. Z yesterday, and he told us that they finally, FINALLY know what kind of lymphoma we're dealing with and why it has been so resistant to chemo.  Dr. Z said that Andrew has had 2 populations of B Cell lymphoma coexisting in his body.  It probably began as one, but when cells divide they sometimes mutate into different things -- no one knows why.  One population of the B Cell lymphoma was a common type that responds well to chemotherapy -- that's what they were able to get rid of with ICE. The second population mutated into a different, rare type of B Cell lymphoma called activated B Cell (ABC) that is very resistant to chemo drugs. The reason it's been so difficult to diagnose, I imagine, is that the early bioposy samples must have been full of both populations, but since they were all B Cell it was hard to understand what was happening. They had to get rid of the first population to discover the second.

Fortunately, Dr. Z says that the lymphoma that's still present has all of the classic markers for its subtype, so we can now be clear about what we're dealing with and how to properly treat it. The bad news, obviously, is that its a very difficult type of cancer that previously offered a poor prognosis. The good news is that in just the last 2-3 years some new drugs have been developed that are showing real promise for eradicating this subtype of B Cell lymphoma. He's starting Andrew immediately on a drug called lenalidomide, which is a cousin to the old drug thalidomide (it's safe as long as you're not planning to have any babies while taking it!). It's not a chemo drug, it has a completely different mechanism of action -- in fact, they don't really know how it works, but it somehow targets and kills cancer cells and spares the healthy cells. It comes in a pill that Andrew will take every day for 21 days along with Rituxan, and then Dr. Z will check the progress. He said it could take 2 or 3 cycles of the drug to completely get rid of the cancer, and then we move on the the bone marrow transplant. If it doesn't work, we move on to a different drug. There aren't too many studies on lenalidomide for this type of lymphoma yet -- it was approved by the FDA 3 years ago for multiple myeloma (a different type of blood cancer), but it is starting to be used off-label for lymphoma as well. The few studies I could find were done on elderly patients, so we really don't have any good information on long term results for younger people. Andrew will be a sort of test case I suppose. This is when I think being at Sloan-Kettering will really pay off -- if we have a chance to beat this, it will be because we are here, where they have experience with the most difficult cancers, and access and knowledge of the newest available therapies. Dr. Z's body language was noticeably changed yesterday -- he was commanding and forceful because he had unraveled the mystery of diagnosis, and can now do what he is renowned for -- applying novel treatments.
The best part is that Andrew gets to be at home for treatment, not in the hospital. No IV's, terrible roommates, bad food, etc.  We can celebrate Thanksgiving and Christmas with the boys in a normal fashion. He will have many of the same side effects as chemo -- low blood counts, possible transfusions, fatigue, nausea, etc., but we can deal with it in the comfort of our own house.  This is huge for us.

We don't really ask Dr. Z about prognosis ever -- Andrew feels like that's pretty useless info because it can so often be wrong, and is calculated using factors that may not apply to each individual. You just have to take each development and each day as it comes, and make decisions based on your individual results. He's a living example of this -- it's amazing that a year later he's still alive and feeling so well, considering how terribly sick he was last year. But he's like a Timex, that guy,  he takes a licking, keeps on ticking. He's been through everything and more, and he just keeps going and keeps fighting.

I receive daily lymphoma news alerts through Google, and I'm always stunned by how many people are being diagnosed with lymphoma every day -- children, teenagers, adults -- sports figures, newscasters, politicans, musicians, actors, moms, dads, school children. All of these people will most likely need a lot of blood products and many of them will need bone marrow transplants during treatment. The Thanksgiving and Christmas/Holiday season is a great time to donate blood through your local Red Cross or join the national bone marrow registry:

Give the gift of life!



  1. Linda, you made me smile ...through all this you made me smile. "no terrible roomates or bad food etc" ........

    Good news, at last, for you all. Stay home, normal day to day routines with the's priceless....

  2. This is such a precious picture of your family. So glad to hear Andrew is home getting more treatment to beat this disease. I agree with Sue Gilmore's comment. In keeping family and friends up to date you have shared some really scary information, and while you are always searching for answers you have a plan, you have hope, you are determined to not give up. You are remarkable, Andrew is remarkable and how blessed your boys are to have you as parents. Enjoy this family time. Continued prayers.