You'd think that with that unexpected good news, we'd be elated and feel an enormous sense of relief. If only it were that easy.
We know full well that we should be happy, and we are happy, but the relief just isn't quite there.
John came up with the analogy of a "cease fire." The war hasn't been won, and we know it isn't over. The enemy has retreated, but we don't know for how long. That enemy is more than likely simply waiting in the wings, waiting to strike again. We just don't know when that day will come.
I've written many times that one of the things that I find most difficult about cancer is the uncertainty, and every time I seem to find a tiny bit of predictability the rug gets pulled out from under me.
We found out that Alex relapsed in October and were given treatment options that we were told were not curative, but that could keep the cancer at bay for a period of time, perhaps even years.
We embarked on a clinical trial that held few side effects, but required a tremendous amount of travel from our home to the trial hospital, 100 miles away. It meant being at the hospital days 1, 2, 3, 5, 8, and 15 of a 21 day cycle, then repeating. Side effects were non-existent until three days before cycle 3 was to begin. Alex developed a rash - a tiny redness in one eyelid that quickly spread to more than 75% of his body within 48 hours. The trial drug kicked his own immune system into high gear to fight the cancer, but it also kicked his integumentary system (skin, hair, nails) into high gear as well. The rash itched and was miserable. Two days into the rash and the day before treatment number 3 he had a scheduled PET scan. It showed a partial response to the trial drug, but due to the severity of the rash, he couldn't continue. The drug helped Alex's own immune system attack the cancer, but was toxic to his integumentary system. Three weeks of steroids and a week's wait were needed before we could being the next treatment.
In early January, he began the next promising immunotherapy: a relatively new treatment for lymphoma called Opdivo. He had four treatments; one every other week. We were told to watch for a cough because this treatment, while it has few side effects, can be seriously toxic to the lungs in a small percentage of patients. Things were going fine, he was feeling okay, and we developed a predictable routine. He had very few side effects.
Then we got a call on Saturday that he had a cough and seemed to have shortness of breath. It wasn't significant, so I waited to call the doctor until Monday morning. They had him come in, did a chest x-ray, and labs. It looked like some pneumonia in the lungs so they prescribed an antibiotic. He developed a fever on Tuesday, the doctor called us to bring him back in on Wednesday and they repeated the x-ray and labs. The pneumonia was spreading and there was a spot that was inconclusive for pneumonitis - an inflammation of the lungs caused by a drug reaction. They put him on steroids. About five hours later we were in the ER and his oxygen saturation was only 71%. They admitted him to the hospital and he spent almost a week on oxygen, had multiple x-rays, a CT scan, and a bronchoscopy. We needed to confirm that he had pneumonitis caused by the Opdivo before we could know how to proceed.
We knew to watch for a cough, but we had no idea that pneumonitis could spread so quickly. Within days, he developed lung inflammation over more than 75% of his lung tissue, which made it a grade 3 reaction. If he'd been on a ventilator instead of oxygen, it would have been grade 4. Grade 5 is dead. During this time they were giving high doses of steroids trying to get the inflammation under control and to improve his breathing. It was becoming obvious that the current treatment could not be continued, but we had not idea what would be next. When his specialist outlined treatment options in October, he had hoped Alex would get six months to a year on the trial drug, and another two years on Opdivo. We exhausted both in a few months. Those first few days in the hospital John and I truly thought that Alex might be out of options and he might never recover from this setback.
Alex, always a trouper, kept his positive attitude in the hospital. His nurses love him. John, Jessica, or I were with him throughout the stay - most of the time, more than one of us. John and I slept on the hospital cots.
After a week in the hospital, Alex came home for a week. I went back to work and John stayed home with Alex. Our doctor assured us that we were not out of options yet, but we didn't quite know what to expect.
Alex already had a PET scan scheduled. It was meant to be done after six Opdivo treatments to see if it was working. We kept the appointment so that we could assess the current state of his cancer and so the doctors could decide the next steps. When we get his PET scans, we travel to Froedtert for the scan, then see the lymphoma specialist the same day. He does a preliminary reading of the image. The following day, we were to meet with our local oncologist and begin the new treatment.
Alex had the scan and we met with his doctor. The doctor brought three images up on his monitor - October (relapse), December (after the trial drug), and current (after Opdivo.)
The scan was clear. No cancer.
We had not even allowed ourselves to anticipate the possibility. Honestly, I felt numb. I had worked so hard to steel myself for another disappointment and to be prepared for the next treatment. I didn't even know how to process the information. When we learned of Alex's relapse, we thought he would get treatment until nothing worked and he was out of options. We did not expect to get to this place of remission ever again.
We also had to process the fact that this drug worked tremendously against Alex's cancer, but were very toxic to his lungs. In the scan, his lungs looked like they were literally on fire. Due to the severity of the toxic reaction, he cannot continue with this drug.
I love Alex's doctor and his style and way of processing and sharing information works very well for us. He is honest, but has a very soft spoken and reassuring demeanor. He doesn't give false hope or placate you. Statistics tell us that the cancer is still lurking somewhere. It is almost certain to come back, but for now, we can enjoy this remission. It's a little hard to be joyful when you know that danger is just around the corner. It's hard to feel carefree when your experience tells you that cancer is much too complicated to allow you to be carefree.
So we really do think of this as a "cease fire." We have a break. More importantly, Alex has a break. His first real break in over two years.
The next PET will be in four months, unless his cancer symptoms return before then. In two months, we see his specialist to talk about other treatment options, including the possibility of a donor transplant. That is the only curative option, but one that is extremely risky. The chance of cure is 50%, but only 25% have a cure and a high quality of life without complications from the transplant. There is a 20% chance he would die from the transplant. There's a lot to consider.
We can forego the transplant and try other options to try to get him back in remission or slow the progression of disease once he relapses. He's not out of options yet. There's a chance that something new could come along while we're doing all of this. Another new drug was approved a few days ago.
We celebrated the good news by taking Alex to his favorite restaurant - Fazoli's.
We are happy for the good news. and are looking forward to spending spring and summer enjoying this remission. We have a family vacation to Disney World planned for June. We won't squander this opportunity, but we are very cognizant of the specter that looms over our shoulders.