- Dani Fontanesi
So the transplant is done. Now what?
A lot of you have been asking what happens now that the transplant is done. Is Matt better now? Is he recovering from surgery? Is the cancer gone? When can you return to "normal" life? There are a lot of questions, so I thought I'd answer some of them here.
When did Matt have the transplant?
Matt had his stem cell transplant (also called a bone marrow transplant or blood transplant) on 10 November 2015.
What is a bone marrow transplant?
"As the name suggests, bone marrow transplant (BMT) originally required placing a needle into the interior of a bone to obtain these cells. Nowadays, in more than 90 percent of cases, equivalent cells can be collected from the bloodstream by HSC ["hematopoietic stem cell"] harvest apheresis, avoiding the painful and more complex procedure of bone marrow aspiration." (See UCSD Health's website under "What is HSC harvest apheresis used to treat?")
The transplant itself is quite anticlimactic -- it's basically just like a blood transfusion. The stem cells are transplanted though an IV. There's no surgery that takes place (for either the donor or the donee). It took less than an hour for Matt, and the transplant itself was not painful or uncomfortable (although the process surrounding the transplant is, as discussed more below).
What does the stem cell DONATION process entail?
In order to donate stem cells, the donor first has to "harvest" the stem cells, meaning they need to create enough extra stem cells to donate to the recipient. This is done in the days leading up to the transplant through a series of injections that stimulate the production of the stem cells. Then they go through a process called apheresis where they sit in a chair (typically) and are connected to an IV. Blood is taken from the donor through the IV and goes into a machine that separates out the stem cells from the other blood cells. The stem cells go into a little bag for the donee and the rest of the blood goes back into the donor.
You can read more about the process on UCSD Health's website here.
The Death Cycle
The thing that makes a stem cell transplant so scary isn't the transplant itself -- it's what happens before and after the transplant that's painful, scary, and anxiety provoking. Because Matt had an aggressive form of blood cancer, he needed to have all his blood and bone marrow completely destroyed before the transplant. That means the doctors needed to give him a very toxic poison that would kill his blood cells. The very toxic poison is called Busulfan, a form of chemo which destroyed his immune system and put his blood and bone marrow cells into something they call the "death cycle" (which, as its name suggests, causes his cells to die). This chemo is so gnarly that if they didn't give him the transplant, he would have died within a couple weeks from the chemo itself. The weeks following the chemo (and the transplant) were quite horrible, as Matt talks about in his last blog post.
Getting released from the hospital
After the transplant, we had to stay in the hospital for a few weeks while Matt's cells went through the death cycle and while the new cells started to engraft into his bone marrow. This process involved some complications, as expected. Matt developed mucositis (which is caused from the Flu-Bu), which led to pneumonia and landed us in a more intensive care unit called "IMU". We were in the hospital for just under 4 weeks for the transplant. We got released on November 29th but then were readmitted less than a week later when Matt developed a bacterial infection in his stomach from a bacteria that is present in all of us, but because he doesn't have a functioning immune system, his body wasn't able to regulate it properly. So we were in the hospital for about another week after the transplant. Aside from one visit to the ER, we've now been out of the hospital since December 11th.
100 days of isolation
Immediately after the transplant, we began our "100 days of isolation", which is part of the standard bone marrow transplant process. We have to be in isolation (whether in the hospital or in our outpatient housing) to keep Matt away from any germs. Even though he's been given a new immune system, it's not functioning yet because the doctors have to keep him on immunosuppressants (which keep his immune system from functioning properly) for the first 100 days. The immunosuppressants are necessary to avoid something called GVHD, which is described below.
During this 100 day period, if he catches a cold (or any other bug), we'll end up back in the hospital. If he contracts a bacterial infection, the bacteria could spread throughout his body quickly and his body could become "septic" (overrun with bacteria). The bottom line is that we have to live in a bubble for 100 days and adhere to insanely onerous cleanliness standards.
So what does it mean to be in "isolation"? For the most part, it means he can't leave our apartment (outpatient unit) unless we're going to another controlled environment (like the hospital for outpatient treatment or a close friend or family member's house under certain conditions). We can go for walks in the fresh air, but there are also various restrictions on this due to risks associated with sun exposure and bacterial spores that could be present in soil and bush. Also, since Matt isn't allowed to go to public places like grocery stores, and since he can't be left alone, it makes things like grocery shopping or running errands quite challenging for us!
(Above: Matt's daily medications.)
Graft Versus Host Disease ("GVHD") and post-transplant risks
The two biggest risks post transplant are (1) complications from not having a functioning immune system as discussed above, and (2) graft versus host disease, or "GVHD".
GVHD is when the "graft" (the new blood cells) begin attacking the "host" (the body in which they've been transplanted) because they think it's a bad foreign body. They've been trained to think that everything that's not part of their "original host body" (the donor) is bad, so they'll attack normal, good cells as if they're bacteria or a virus or something that needs to be destroyed. Everything in Matt's body looks like an enemy to the new immune system -- his liver, kidneys, skin, stomach, other vital organs -- so it needs to be trained to decipher between "bad foreign cells" (bugs, bacteria, cancer cells, etc) and "good foreign cells" (Matt's normal cells that the new immune system doesn't recognize yet).
The new immune system is like a well-trained guard dog that's been trained by one owner but then is suddenly adopted by a new owner. The guard dog will initially see the new owner as a threat rather than a friend. It will automatically want to attack him because it doesn't recognize or trust him. It doesn't realize that the new owner is a good guy who just gave him a new home. It will take some time, training, and TLC before the guard dog learns that the new owner is his friend, not his enemy. In the meantime, the owner will have to be really cautious around the new dog or it will attack him.
It's the same way for Matt's new immune system. It needs some time to get used to its new home before it will start protecting it. At first, it will just think Matt's body is bad and want to attack it. In order to prevent this, the doctors keep the new immune system "sedated" for the first 100 days or so with a drug call Tacrolimus (or "Tacro" for short), an immunosuppressant. Like a guard dog on tranquilizers, this gives the new immune system some time to get used to its new home but it keeps it too doped up to want to fight anyone.
Once we reach the 100-day mark, the doctors will slowly begin lifting the immunosuppressants and this is when things will get a little tricky again. We don't know how "tricky". We don't really know what to expect, but we just know that they'll have to closely monitor him and respond quickly if the new immune system begins attacking him. Apparently the objective is to wean him off the immunosuppressants over a period of somewhere between 6 months and a year. After that, he'll still be at risk for GVHD for the rest of his life, but it becomes more manageable.
Getting the "all clear"
On December 10th, thirty days after his transplant, Matt had his first post-transplant bone marrow biopsy. Unlike the transplant, bone marrow biopsies are quite intrusive and painful. They have to stick a big needle directly into one of the large bones in his lower back and extract the bone marrow directly from the bone (he's had about half a dozen of these so far). I won't explain the process in any more detail than that, but suffice it to say, after sitting in the room with him for one of these procedures and nearly losing my lunch, we've both made the decision that it would be better for both of us if I don't attend another one.
In any event, the results of his first post-transplant biopsy came back "perfect", according to the doctors. His blood cells were 97% his sister's (his donor) and will soon be 100%. And the best news of all is that there were no traces of cancer detected in his blood! The chemo did its job in wiping out his old cells, and his sister's new cells did their job at getting to work making new blood and bone marrow! This doesn't mean that we're out of the woods yet, but we've come a long way in a (relatively) short amount of time.
Returning to "normal" life
At this point, we have no idea when we'll be able to return to "normal" life or what "normal" life will look like when we're able to return to it. Maybe a few months. Maybe a year. We just don't know. We know that Matt will need close monitoring for the next six months to a year while he's on the immunosuppressants. We don't know what sort of post-transplant complications he'll have after they begin to wean him off the immunosuppressants or how GVHD will manifest. We're told he will have GVHD, we just don't know to what extent. He already has some minor GVHD, but we're told this is a good thing because it demonstrates that the new immune system is working. It's doing its job and attacking things, it just doesn't know what it's supposed to attack yet (in this case, it's attacking his skin and causing some rashes on his back and chest and head, but it's all very manageable at the moment).
Once they start weaning him off the immunosuppressants, the new immune system will get more aggressive, though. That's a good thing because it will aggressively attack the bad cells. But it's a scary thing because we don't know what else it will start aggressively attacking. It's just a "wait and see" game. The doctors will start playing around with his Tacro levels (the immunosuppressant) and then wait and see what happens. They will respond reactively rather than proactively because there's no way to predict how any one person will respond. Like a new guard dog that's been semi-sedated while it gets accustomed to its new surroundings, the new immune system will be a bit dopey when it starts to wake up. We don't know what it will initially see as an enemy and what it will see as a friend, so we just have to stand by with tranquilizer gun, ready to act quickly when it starts attacking the wrong things.
So while we still have a lot of uncertainties ahead of us, we've overcome the worst of it and have had some HUGE victories in the past four months! The cancer is gone, the new immune system is transplanted, and now we just have to teach it how to behave. We've been told to expect some rocky roads ahead of us, but after surviving the last four months, we know we can survive anything.
So here's to a new year ahead of us! 2015 was a roller coaster of a year. It brought our highest highs and our lowest lows, but 2016 is the year for change. We will leave all this behind us. We will bury the sadness, tears, pain, and suffering, and we will dance into our future -- a future we have yet to create. We have a blank slate and all the colors of the world to choose from, and we intend to paint a beautiful picture with our lives.