Sorry to leave everyone hanging for so long (especially those of you who check this blog daily!). I have been meaning to post details of what’s been going on during this hospital stay for quite some time now but just haven’t gotten to it.
There are a lot of developments to report, but let me start with the most important:
I had a bilateral bone marrow biopsy yesterday, which essentially means I had two biopsies, one from my right hip and one from my left. The results came in this morning: I still have 33% blast cells on one side and 19% on the other. Neither number is completely “accurate”, but the point is that there is still significant leukemic activity and I’m still quite far from remission (defined as less than 5-8% blast cells).
Exactly two weeks ago, I was given a relatively low dose of Mylotarg, a “search and destroy” type of drug that binds to leukemic cells and kills them. A lower dose was administered to prevent fatal liver toxicity. That dose seems to have kept my leukemia in check and prevented it from blasting off further, but it did not get me to the remission I absolutely need to move forward. Fortunately, my liver function has remained within normal ranges so it appears I can handle more Mylotarg.
Tonight, I will be given a second dose of Mylotarg which will be roughly double the first dose. This is not guaranteed to put me in remission and also carries with it the risk of fatal liver toxicity. In two weeks, I will have another bone marrow biopsy to see if remission has been achieved.
My current inpatient attending doctor (who rotates off tomorrow, transitioning to someone new to my case - something I hate about research-driven health care systems), has said that there’s a less than 50% chance of achieving a sustained remission with this second dose. If remission is not achieved, then different chemo options can be explored, but my leukemia has now seen many different chemo combinations and somehow ultimately survived them all, including the fully ablative transplant process.
Looking back at my life so far, anything significant I’ve achieved - getting into Stanford, starting my current company 5 years ago with only $4k, just to cite two examples - have been in the face of much greater odds. In fact, I have always thrived under pressure and cherished nothing more than beating the odds. Of course, a key difference is that I can’t simply outwork someone or run through a wall to achieve a goal here. I can only maintain a positive outlook and keep trying to absorb all the love that you all are sending my way….I’m still overwhelmed by the love and it brings me to tears when I think of it.
Looking at the path forward, many of the challenges are tied to timing. If the Mylotarg gets me into remission, then the team has decided to go forward with a cord blood transplant - ironically what at one point was my only option given that the 10/10 match had not yet emerged. Unfortunately, that remission, if achieved, needs to last a full 6 weeks. Why? Because the cord blood banks refuse to release even a small sample for testing until I’m in full remission! That testing takes 3 weeks plus it will take at least another 3 weeks for the graft to take hold. So instead of needing a 3-week remission I will need a 6-week remission, simply because of cord blood bank policy. Getting any sort of remission at this point is a challenge, so this is particularly frustrating and risky.
The other immediate timing issue is getting our hands on a FLT-3 inhibitor, which Novartis is willing to offer us on a compassionate use basis. This inhibitor has the strong potential to extend any remission achieved by blocking the FLT-3 mutation my leukemic cells carry, a mutation that basically turns a cell replication switch to the “on” position and leaves it stuck there, causing uncontrolled cell growth. My dear friends, Veer Gidwaney and Sundeep Ahuja, have been pushing Novartis to send all the paperwork to the FDA and, furthermore, cold-calling to get its approval (which can take up to 30 days) fast-tracked. These guys are doing amazing things, and I only occasionally am made aware of them. Within the next few days, I expect we’ll be successful in getting this final approval and receiving the FLT-3 inhibitor from Novartis right about when my team would want to administer it.
Whew, so that’s quite an update. Commendations to anyone who’s lasted this long! Thanks as always for your thoughts and prayers. This is the time we need them most!!
With love, Sameer