The story so far

This blog will track Brad Buchanan’s progress through his treatment for T-cell lymphoma, particularly through his upcoming stem cell transplant—currently slated for January 2016. Wondering how we got here? Honestly, we kind of are too. This time last year we didn’t have any idea that our 2015 would be dominated by Brad’s diagnosis with and treatment for a lymphoma type so rare it doesn’t even really have its own name.

So here’s the story so far—the long version. (If you’re looking for a TL;dr version, check the About page, which also has some ways to help.) A little over a year ago Brad noticed some lumps under the skin along his jawline. He’d also lost a lot of weight (like, really a lot), but attributed that to exercise. He went in to see the doctor, who looked him over, saw a fit and healthy guy in his early 40s, and said, well, we’ll check out those weird lumps if you really want but we’d be very surprised if they were anything to worry about. Then he started noticing similar lumps on his abdomen.

A couple of biopsies and several other doctors saying they’d be very surprised if it were cancer later, well, everyone was very surprised: He was diagnosed with T-cell lymphoma in February 2015. A word about lymphoma: There are a lot of kinds. The two main types are Hodgkin and non-Hodgkin; Brad’s is non-Hodgkin (NHL, but definitely not the type of NHL that most amateur Canadian hockey players dreamed about as kids). Most NHLs are B-cells; a smaller proportion are T-cells, and then there are many subtypes of T-cell lymphomas. Brad’s is officially called peripheral T-cell lymphoma, NOS (not otherwise specified), though there has been some debate about its exact nature (it has a lot in common with the cutaneous lymphomas). As an aside: T-cell lymphomas are not as well understood as other NHLs, and are harder to treat and cure, in part because their rarity means there are few clinical trials or opportunites for double-blind studies. Anyway! If you are interested in more details about lymphomas you can read up on the various types here.

So, at the time of Brad’s diagnosis it was thought that his disease was indolent (slow-growing), and that it wasn’t particularly urgent to treat. We spent the spring waiting for insurance approval on one treatment option and seeking a second opinion because the type was so rare. Then in May the cancer surprised everyone again: It turned out Brad had a rapidly growing lung tumor (an expression of the lymphoma, not a separate lung cancer), which caused him a lot of trouble. He started chemotherapy right away; it worked so well the tumor shrank extremely fast; it left a hole in his lung, which then collapsed; and he spent nearly three weeks in the hospital at UC Davis Medical Center, which has a great cancer center and which we’re fortunate to live near. Happily, he recovered well from that and the summer was uneventful, with him doing chemotherapy (a regimen called EPOCH, which he tolerated well) every three weeks.

That chemo regimen ended in early September and Brad was in remission and preparing for an autologous stem cell transplant. There are two types of stem cell transplants, formerly known as bone marrow transplants, autologous and allogeneic. In both, the patient gets a super-blast of chemotherapy (and sometimes radiation) to kill off as much cancer as possible, which kills the patient’s immune system. The patient then gets stem cells (harvested from the bloodstream in a process called apheresis, which is similar to dialysis) that can rebuild the bone marrow and hence the immune system. (This used to be done with bone marrow, which was much more painful.)  In an autologous transplant, the patient’s own stem cells are used, which means there’s no risk of rejection; in the second type, an allogeneic stem cell transplant, donor cells are used, either from a sibling or a matched unrelated donor. (Those interested in more details about transplants—there is a lot to know and it is seriously amazing, almost magical science—can start here to learn more.) The allogeneic stem cell transplant typically has a longer recovery time, but in it the new immune system itself can fight the cancer.

The cancer, however, had another surprise in store. In early October Brad noticed that the lumps on his jawline and under the skin on his abdomen were back. A PET scan confirmed that the cancer had returned aggressively and he was started back on a new chemo regimen, called GVD, immediately. (Seriously: he was back in the hospital for more chemo two days after the PET.) And the plan changed: The relapse meant he was no longer eligible for an autologous transplant (which relies on super-chemo alone to cure the cancer) but needs an allogeneic transplant, using donor cells, and in which a new immune system may provide him with a cure. The best opportunity for a match is a sibling; sibling matches reduce the risk of severe GVHD (graft vs. host disease) post-transplant, which is a big risk of the procedure. We were extremely fortunate that Brad’s brother James is a match; there is a 1 in 4 chance of any given sibling being a match. If he hadn’t been, a match would have been sought for Brad on the international donor registry. (One great way to help people suffering from blood cancers is to get on the donor registry if you’re able and willing; here’s where to do that.)

Oh, and that brings us to a note about the blog title: We’ve learned, as you might imagine, a lot of new terms and ideas throughout all this. Most of them sound, frankly, like blah blah blah scienceytalk to our literary-leaning minds. But there’s one that delighted us both. The term for what Brad will be after his transplant is a chimera. No, not a mythological fire-breathing dragon-lion, and not an illusion, but instead a person with two genetically distinct types of cells. That is, the DNA in his blood will be different from his other DNA. (This could give him a golden opportunity to commit a crime; lucky for all of us, he’s a law-and-order-minded Canadian, but maybe I’ll get inspired to write a whodunnit turning on this.)

So where are we now? Brad is undergoing chemo and it’s going well, though he recently got pneumonia (an opportunistic infection when his immunity was low) and spent a few days in the hospital. He’s now at home, lying low and avoiding cold and flu season. (Hey everyone! Here’s a PSA for getting a flu shot and keeping all your vaccines up to date—not just for your own sake but also for all the immunocompromised people out there, like Brad.) That’s pretty much the plan until the transplant, which is now scheduled for January 11. He’ll go into the hospital January 3, for the prep regimen (which involves high doses of chemo and radiation), James will come out here and donate stem cells, and then Brad will have several weeks in the hospital waiting to become a chimera, via what is called engraftment—the growth of the new immune system—followed by a long recovery at home.

Our daughters are vastly relieved that Brad will be home for Christmas, and we’re vastly relieved and grateful that James is able to give us the best holiday present of all time, a new immune system that may cure Brad’s cancer. Watch this space for updates from both of us.

 

 

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