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: http://marrow.org/Home.aspx

Give the gift of life!

xo
L

quick update

Andrew had his liver biopsy this past Tuesday. Before he was wheeled in we spoke to the doctor about what had happened during the last biopsy. He told us that non-diagnostics only happen in 5 percent of all biopsies.  So we were just in that lucky 5, I guess.  Anyhoo ... the biopsy went smoothly, and after it was done the doctor told me that the samples were "definitely diagnostic".  So, I'm holding him to that promise.

Andrew has been having a bit of a rough time after this one. The liver area is sore, and he's having a lot of nausea and trouble eating.  I guess this is why they don't want to go poking around in there if they don't have to. But there hasn't been any blood or sharp pain to indicate internal bleeding, so that's a blessing. We haven't heard yet from Dr. Z's office about when to come in for the results -- about a week, I would think.


We got to have dinner with our old friend John Fisher the other night.  We haven't seen him since Chuck's wedding more than 2 years ago. We had a great time laughing and catching up, and cancer didn't even come up until the very end of the evening, so that was superb!

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.

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.

Struggling for air

Yesterday was not our favorite day.  We know now not to build up false hopes, but we were feeling pretty confident about the EPOCH.  Andrew has been feeling good (despite the low blood counts) and we were so encouraged by the post-ICE scan. I anticipated that Dr. Z would send us back for another round, but that it would be slowly working.  We were totally unprepared for "no change".  No Change!  After a 96 hour infusion!  Dr. Z. put the 2 PET scans up side by side and they were indistinguishable.

Before the EPOCH, DR. Z had discussed 2 theories -- that these are 2 different cancers, or that it's 1 cancer that needs a good, long chemo bath.  After consulting with the tumor board, Dr. Z. said "over 50 years of combined experience makes us believe that it's one cancer", so let's give it a bath.  Well, it appears that they made the wrong guess, and now we move to Door #2 -- 2 separate cancers.   Exhale.

I understand that doctors are not infallible gods. I do. I understand that this is a tricky cancer.  But 4 different institutions, scores of doctors and pathologists, and no one can figure this out after an entire year?  Meanwhile, Andrew has had to endure round after round of chemo, six radiation-filled scans (with more on the horizon), not to mention the countless transfusions and drugs.  Sorry to vent, but can somebody please unravel this soon!  As Dr. W. said to Andrew the other day -- "at this point there's no protocol -- you just try everything you have." Exhale.

The wrinkle in all of this is that Dr. Liu, way back at Westchester Med, last January, said that he suspected it was 2 cancers.  I believe his exact words were "it's almost like you have 2 different cancers."  !   But we were forced by the insurance company to leave Westchester, and I'm trying not to make myself crazy by imagining all the months of treatments Andrew might have been saved had we been allowed to continue there. Or if I had been tough enough to get him into Sloan at the very beginning.  But he was so desperately sick then and we were terrified.  Dr. Liu saved his life by making a series of really aggressive treatment decisions. After being informed that Westchester was no longer in the picture, we had only a few days to figure out how to keep him on his treatment schedule. During Christmas week!  Breathe, breathe.  Anyway, that was then, this is now.

So.  Dr. Z has ordered a needle biopsy of a node in his neck sometime this week-- thank god it's not another surgical biopsy -- I think Andrew would have thrown in the towel right there.  They will test it a thousand different ways and hopefully, someone will know what it is.  And maybe they'll know how to treat it.

And that's all for now.

Recovering

Andrew has spent the last week recovering from the EPOCH infusion.  He's crashing now, but still seems ok -- he's fatigued and nauseous, but generally hanging in there.  EPOCH contains some of the drugs that we haven't seen since our hyper-CVAD days (back in Westchester and AMC), so he's unfortunately revisiting some side effects that we had forgotten all about -- hello, vincristine!

We have an appointment at MSK on Thursday for a bright and early PET scan followed by a visit with Dr. Z.  Usually we don't get the PET results until several days after, but it seems they're moving things along quickly.  So that's great -- let's go!  I'm assuming Dr. Z will give him another round of EPOCH, unless by some miracle it's in remission and we can move ahead to the transplant.  I hate to say too much these days -- Andrew and I were laughing that everything I write on the blog lately turns out to be wrong! Dr. Z keeps changing his approach, and the plan is never the same from week to week.  I'm not complaining -- I know these are the very best doctors and I love that decisions stay fluid depending on input from tumor board, etc.  One of the things that frustrated us at Albany was the stone-clad protocol. They decide what you have and "this is the protocol" -- they don't waver.  We asked a few times about additional approaches (things we knew about from research), but the answer was always we don't do that, we do this -- end of story.  Things seem very different at MSK -- with a very problematic cancer like Andrew's, we've learned that there really is no protocol.  You have to try things, because they really don't know what will work -- they certainly know what to try, but it makes you realize how far we have yet to go with cancer research.  They really don't know why many cancers  transform and become resistant to drugs -- they're very honest about not knowing, which I appreciate.

So, I was under the impression that Andrew would not get a transplant unless they get the cancer in remission, but it seems like that's not the whole truth -- it's looking like he will get the transplant, but there are much better odds of success if it's in remission.  What you don't want is for any pesky cancer cells to overpower your brand new donor cells. So this is why Andrew's on the endless chemo loop. I think they must feel that he's young and can endure more than your average cancer patient.

I'm sure it seems like there's a lot of guessing going on, and that the doctor could easily clear up all of these misunderstandings. It's hard to describe how all of this has been an evolution -- as they've tried to get a good diagnosis (I'm still not sure if we've ever gotten a definitive diagnosis), and the longer we're in chemo, the question and answer sessions get fewer, because we're all only focusing on one thing at the moment -- just getting the cancer in remission -- so we don't talk too far ahead, we don't micromanage anymore.  As I told a friend the other night, now we say "tell us when to show up" and that's it.  Andrew's feeling good -- hopefully, fall is all about a successful transplant, and we can soon  return to our lives.

xo
L

The EPOCH epoch

Andrew has been recovering slowly from the 2nd round of ICE.  He needed several transfusions of platelets and one transfusion of RBC's, which were handled by Dr. W here, near home.  On Friday, his platelets were still very low, and I knew that meant Monday's treatment would be delayed. Monday, I talked to Dr. Z's nurse at MSK, and she told us that Dr. Z wanted to see Andrew today for a bone marrow biopsy.  Andrew was not happy, to put it mildly -- bone marrow biopsies are his least favorite procedure!!  But he got on the train like a good cancer patient and headed into the city.  I was unable to join him as the short notice made it impossible with the kids' schedules.  Dr. Z ended up deciding against the biopsy (hooray!), but told Andrew he would be admitted immediately to start chemo -- what?!  His platelets are still low (though much better), but Dr. Z said he didn't want to wait any longer and give the cancer a chance to grow again.

"We've been talking about you a lot" he said. Gulp. Much better to be the patient they don't need to talk about a lot, isn't it? The tumor board has been poring over his case and his very stubborn cancer.  They initially wanted to do the bone marrow biopsy to see if they were dealing with 2 very different types of cancer, but eventually decided that it was most likely not so.  Instead of continuing the ICE or the IVAC regimens discussed earlier, the group and Dr. Z decided to give Andrew a 96-hour continuous infusion called EPOCH.  This is a cocktail often used for very stubborn cancers that have developed chemo resistance.  Studies have shown that a continuous infusion at low concentrations can sometimes be more effective than brief, high dose infusions for chemo resistant cancers.  The plan is to get the 4-day EPOCH (that just sounds so weird -- a 4-day epoch), get another PET, and if necessary do another 4-day EPOCH cycle.

Has anyone ever had as much chemo as my husband?! Lordy. Hopefully, the EPOCH does the trick and we move onto transplant!