Did you have to have surgery?
You know, that is the miracle. Dr. Damon had told me they might need to drill holes in my skull to relieve the pressure, but they didn't have to do it. I was given a high dose of prednisone to get the swelling in my brain down.
Oh my gosh, I thank God every day. Bleeding of the brain is very, very dangerous.
Once you recovered from that, what happened?
Then I had to continue my treatment and unfortunately, the all-trans-retinoic acid can cause a side effect called ATRA syndrome, which is another thing you don't want. It causes a buildup of fluid in your lungs. I gained about 20 pounds of fluid that filled my chest and lungs. I had a fever. It was almost like pneumonia. The pressure on my chest made it hard to breathe. I had to be on a diuretic. And then the antibiotic they gave me for that made me break out into a rash that felt like a sunburn.
All these problems must have been very discouraging.
Knowing I had more than a year of treatment ahead, it was hard for me to see how I was going to make it. Just after the brain hemorrhage I asked my doctor, "Am I going to die?" And he said, "No, you are not going to die." I was ready to give up, but he gave me hope.
Did things improve?
Yes, the problems did dissipate. They had warned me that any complications would happen in the first seven weeks of treatment. After that, I tolerated the later cycles of chemo pretty well.
There's also an unusual drug used to treat APL, right?
They use arsenic. I was given it at UCSF and then for 10 weeks on an outpatient basis once I went home.
What did you think when your doctor told he wanted to treat you with arsenic?
I was scared to death. But when you hear from a top expert in the field that this will enhance your chances of a cure, then you have to do it. And you know what? I had no side effects from the arsenic, which was amazing to me. In fact, during the time I was getting the arsenic infusions I was actually feeling pretty good.
But arsenic can cause heart problems.
To protect my heart, every morning before the arsenic was administered I would have to get an EKG to check my QTc [a measure of heart rhythm.] If it was too fast, I could not get arsenic that day.
All told, how long did you have to do treatments?
I had three cycles of chemo, where I'd be in the hospital getting chemo for two weeks and then be off for a month to recover. Then I had to keep taking ATRA, one week on and one week off, for a year. I wasn't a big fan of it, but Dr. Damon said it was an extra insurance policy to make sure we keep all my cells in marching order.
Were you being monitored during that time?
They were checking my blood every three weeks, checking the platelets, white blood cells [for signs of infection] and my liver [for signs of toxicity].
At what point did your platelet count return to normal?
My platelets were normal after the first treatment. When I left UCSF the first time they were over 250,000 and they did a bone marrow test after I was done with treatment to be sure.
So five years out, are you considered to be in remission or actually cured?
I am cured.
Some studies have suggested this type of leukemia may be more common in people with a Latino background?
That's right. I'm half Mexican and if the link with my ethnic background had been recognized I might have had a faster diagnosis. I'm trying to alert the Latino community to their risk and get it out into the media. That knowledge might be lifesaving information.
I understand you also have endowed a fellowship at UCSF?
It's the Nancy White Gamble Hematologic Malignancies [Endowment] Fund. It's to support training future fellows who will be training in blood-related cancers. I could not walk away from this whole experience without giving back my thanks and gratitude to the doctors and nurses. The first fellow started in October. I am thrilled to meet this person.