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!


Friday, October 19, 2012

quick update




Friday, October 12, 2012

life on the treadmill

I almost didn't know how I was going to write this post, mainly because I didn't think anyone would believe it! We went to MSK yesterday for the results of the needle biopsy. We were sort of dreading it, and tried to think of the ways it could go:

1) Dr. Z says "here are some brochures for my 5 favorite mortuaries" (Andrew's joke)
2) it's "xyz" lymphoma, and we're admitting you today for fabulous new chemo cocktail
3) it's some weird infection, here's an antibiotic, and we'll see you next month for your transplant.

But we never, ever, EVER seem to be able to predict correctly. Instead, we were told -- the sample is non-diagnostic.  What?
The surgeon extracted enough samples, and some atypical cells were seen in some of the samples but not in others. This means that they cannot conclusively say if they are cancerous or not. Which means ... wait for it ... ANOTHER BIOPSY! This time of the liver!  You're kidding.  You're kidding, right?! So the 96 hour chemo infusion was a waste, the following PET scan was a waste, and the CT assisted biopsy was a waste. It's almost too much.  It's like a bad soap opera that you would turn off, because it's just too far fetched. But this is what it is.

So, now they want to do a PET assisted needle biopsy of the liver. It's impossible to see any liver mass on the CT scan, but you can see it light up on the PET scan.  They will put Andrew in the PET and take some samples from his liver. They could have done the liver to begin with, it seems, and it would have been more accurate, but it has more risks. The liver bleeds when you start sticking it with needles, and Andrew doesn't have such great platelet function these days. But his counts are much better now that he's a month out of chemo, so hopefully everything will be fine.

Of course all of this means more radiation, and more delay on necessary transplant treatment as my husband continues to be used as a human science experiment. And I'm beginning to believe that they will never be able to come up with a diagnosis. But you can't refuse any of it -- not if you want to live.

Wednesday, October 3, 2012

love and light

Andrew had his needle biopsy done yesterday at MSK. It was fairly easy, and he doesn't have much pain as a result.  We don't know yet when the pathology will be complete -- maybe about a week or so. Which is good -- another week to live in blissful ignorance of what this new thing might be.

Andrew and I aren't big pray-ers ourselves, though we are very grateful for all of the prayers and wishes being sent our way.  We've both had moments of darkness, when I'm sure we whispered a desperate plea to the universe, but generally we take our strength from each other, our boys, our family and friends.  We're wrapped in so much love -- it gives us the strength to continue when things are uncertain.

I've realized just lately however, how much strength I take from our surroundings as well. We live in one of the most beautiful places in the country, the Hudson River Valley, and have never been so happy. It's almost untouched, with miles of gorgeous trees, mountain ridges, clean air, and the sparkling Hudson River.  On Thursday, when we had just received the unsettling news that we were now dealing with not 1 but 2 cancers, Andrew and I walked to the train in a bit of a daze.  We were befuddled and angry, scared and tense. But as the train snaked it's way up the Hudson towards home, I could feel a lot of the tension leave my body.  And I understood that I'm pulling my strength from those rocks and that river. We have so many happy memories here -- the place is in our bones now, and we are a part of it. Maybe that's what God is.