T-cell test & more waiting

After what felt like a long wait, we heard from our doctor at Hopkins yesterday. Their transplant conference had reviewed Kevin's case and the doctors had a "lively" discussion about how to proceed. It seems nothing with Kevin's disease is black and white, only gray. 

Some technical background first (skip to the bottom if you want to avoid the biology lesson!): 

After Kevin's diagnosis, it was recommended by Dr. Strair that we pursue the chemotherapy path, because he did not have a perfectly matched sibling that could be his donor. He was making his way through months of intense chemo, when a routine (if you can call drilling into your hip routine) bone marrow biopsy produced some suspicious results. Bone marrow biopsies are used to confirm that a patient is still in remission.  Before leukemia blast cells show up in a blood test, you can find them in your bone marrow. The Cancer Institute of NJ performs a gross pathology test, essentially looking for leukemia cells under a microscope.  Since June, they have never found any in Kevin's bone marrow or blood.

They also send Kevin's bone marrow out to Seattle for another much more sensitive test.  The test they perform is called a TCR gene rearrangement study, which can detect very very low levels of potential leukemia cells before a patient enters a full-blown relapse.  However, the presence of these T-cell gene rearrangements does not necessarily imply leukemia because several benign conditions may show such a pattern. We all have T-cells as part of our immune system and we all get spikes of certain types when we're fighting off an infection, for instance. Since September, Kevin's test has come back positive for low levels of T-cells. The big concern for Kevin is that we don't know if this leukemia or a more benign condition, but our doctor believed there was an 80% chance it was leukemia.  Hence, we moved toward a transplant, as our doctor felt this meant relapse was imminent. 

Hopkins says not so fast! They want to figure out if this result is leukemia-related (80% chance) or just what Kevin's body (leukemia or no leukemia) does (20% chance). They believe by comparing his first bone marrow biopsy (when he hadn't yet received treatment and was mostly full of leukemia cells) with the last one they will be able to determine what is really happening. They hope to have the results by next Monday. If it is leukemia lurking, then he will proceed to a haploidentical transplant.  If it's not leukemia, it's not clear that Hopkins would recommend a transplant at this point. If they can't prove that it's the leukemia, a transplant may be dramatically over-treating him. Why use a cannon when a bullet will work? Needless to say, that result would begin yet another round of second or third or fourth opinions. We are both glad that Hopkins is pursuing this testing and feel comfortable with their expertise.

So we wait again. In the meantime, Hopkins is proceeding like transplant is happening. Insurance approval is still being sought and then blood tests can begin. Doing this extra testing shouldn't slow us down any. 

Kevin feels well, but extremely fatigued.  He has some good energy days; yesterday he was able to ice skate a little with the kids - they were thrilled! But today, it's caught up with him and he's been couch-bound all day. There's no predicting how he's going to feel from day to day, even hour to hour. We're both learning have no expectations and whatever it is, it is. 

On a lighter note, our bathroom is done and looks fantastic! Now, I'm not even gonna think about if Kevin doesn't need a transplant, which means I didn't need to pay someone to finish my bathroom....!! Not that I mind...there's even a silver lining with leukemia!

 

Holding pattern continues

"I'm just hangin' on while this old world keeps spinnin'

And it's good to know it's out of my control."

Those words from the Al Anderson song capture our lives these days.  We're holding on, waiting for a direction and forward progress, knowing we're doing all we can and leaving the rest to the doctors.  It's truly an exercise in patience and letting go.

Yesterday would have been the day Kevin got his new cells from his anonymous donor.  Instead, we spent the morning in New Brunswick, getting chemo.  His doctor has decided to restart his chemo regimen while we are waiting for a new date, in hopes of preventing a relapse.  Yesterday Kevin got 2 drugs, vincristine and doxorubicin, known among cancer patients as the "red devil." The chemo is bright red, like Kool-Aid, and causes an instantaneous metallic taste in his mouth.  Many chemo patients avoid red colored drinks after getting this drug and the mere mention of the name is enough to turn my sister-in-law's stomach (Maureen had this drug too, during her breast cancer treatment).  Happily, with enough pre-medication, Kevin seems to handle it pretty well and can still stomach red cranberry juice!

So, we are waiting to hear back from Johns Hopkins.  The transplant team will be reviewing his case next Tuesday and will make a formal recommendation to us.  Many transplant doctors, including Dr. Strair and many of the doctors at Hopkins are in Florida this week for a transplant conference, which is delaying some of our progress. We're hoping that Hopkins will send out the blood test kits for Kevin's siblings this week. 

Kevin will be getting another bone marrow biopsy (his 8th!!) and a CAT scan on February 23rd, to confirm he's still in remission.  Then based on timing, he may begin the first of 8 more days of chemo, 4 times a week for 2 weeks.  

In the meantime, we're hanging on!

Our visit to Charm City

We had our whirlwind visit to Baltimore yesterday and our heads are still spinning!  Processing very technical medical information and trying to understand outcome data for experimental procedures is not an easy task.

We were lucky enough to have our dear friend Katy join us for our visit.  It's always a help to have another set of ears and another perspective when heading into a big appointment. Before our doctor's meeting, we bolstered ourselves with a little drink at a very shabby Baltimore restaurant.  Johns Hopkins Hospital (JHH) is a huge medical center with multiple buildings and thousands of workers/patients but it's oddly lacking in nearby restaurants.  So we experienced a little local color!

We met with Dr. Bolanos-Meade for an hour and a half.  He spent a lot of time with us, explaining the protocol, its successes and its unknowns, and his thoughts about Kevin's disease.  JHH only does 2 general types of transplants: a fully matched 10 out of 10 or a haploidentical transplant (using a half-matched parent, child, or sibling).  They will not transplant someone who has a 8 out of 10 match (as Kevin does), feeling it is not worth the quite large chance of mortality from the transplant itself.  The doctor feels these transplants border on "criminal" because of the 50% transplant related mortality rate and serious possibility of complications if you make it past the transplant itself.  It became very clear to us that the 8 out of 10 transplant was off the table.

JHH has had great success reducing side effects with their haplo transplants.  With their new regimen, they've been able to reduce the transplant related mortality to 5-10% (compare that with the 50% above).  They have also been able to reduce the risk of serious and deadly infections dramatically.  They are very confident in their regimen and it's currently being expanded to 25 other transplant centers in the US.  JHH has done most (80%) of the 200 haplo transplants in the US, so they are the place to go for this new procedure.  It also became clear to us that Kevin needs to go to a major transplant facility to have his treatment.  We've been treated very well at Cancer Institute of New Jersey, but it's time to move on.  

There's one huge unknown with this haplo transplant: leukemia outcome data.  This is a very new procedure, with very few patients who have been through this, so there is scant data on how well the transplant cures patients of leukemia.  There have been some small studies published, but there were from early clinical trials that tended to accept the worst case patients.  Other medical centers have larger data sets, but didn't use exactly the same protocol.  That's a big piece of the puzzle that's missing, but it's what you accept being on the cutting edge of medical science!

We asked the doctor to begin the transplant process for Kevin.  After we get insurance approval (which may not be a sure thing with this new procedure), JHH will send out blood test kits for Kevin's 4 haplo siblings.  They will also order additional testing for Kevin and whichever sibling is chosen as the donor.  The earliest Kevin will be back in for transplant would be 4 weeks, but it could take as long as 8 weeks.  Of course our concern is Kevin relapsing, so the doctor recommended restarting his chemo course as soon as possible.  

The transplant procedure itself is entirely outpatient, unless complications arise.  Kevin will have to visit their outpatient treatment center every day for 60 days for infusions, blood work, and tweaks to his medicine.  They require patients to stay within one hour of the hospital (we are 2 1/2 hours away), so we will need to find local housing.  If all is well, Kevin will be released to his local oncologist around day 60.  

So, it looks like spring in Baltimore for us! We hear the Orioles aren't that great this year (Dr. Bolanos-Meade says "they stink") but a trip to Camden Yards wouldn't be the worst thing in world.  And maybe we can locate some decent restaurants too! We'll keep you updated.

No new stem cells, just a new bathtub

Instead of getting admitted to the hospital for a transplant, we went shopping for new bathtub!  The thrills never stop! Prior to Kevin's diagnosis, he demolished half of our bathroom and began renovating it.  Since then, he's been a little preoccupied and unable to complete the bathroom.  No worries though, it was ugly, but functional. Until the transplant talk started.  

Kevin's doctor advised us it wasn't smart to have our only full bath half-deconstructed when Kevin got home from his transplant.  Mold, mildew, and an open construction site would not be a good environment for a severely immuno-compromised person. And besides, it would be a long time before Kevin could get back to the business of finishing the renovation.

So, we've hired a contractor to finish the job and he starts tomorrow.  The delay of Kevin's transplant buys us a little more time (not too much, we hope) to complete the job before he gets home.  Here he is with our new tub...

Another silver lining: he has permission to have a beer while watching the Superbowl today.  Yipee!