When my cancer recurred for the fourth time earlier this year, I looked as usual for the most effective treatment.
After talks with various scientists and oncologists, including my own doctor, I decided to go with something called Bispecific Antibody treatment. I was reluctant, especially after they told me about the possible side effects.
For a small percentage of patients, the side effects can be nothing less than terrifying.
Despite these potential side effects, I made the decision to do it because it was showing real remissions in many patients. The results have been called “remarkable,” and a “new era in cancer care.”
The most horrific side effects are frightening but rare – impacting only about three percent. Unfortunately, I was in that three percent group.
I chose to do it despite the side effects. And my first infusion was a relatively smooth ride. It didn’t seem as difficult as I thought it was going to be.
But by the end of the second infusion day things began to get intense and scary. I had been told that the treatment had more potential side effects and was more painful and intense, but there was also more potential to get rid of the cancer than other drugs that are available.
That was the really scary part. While taking these types of drugs, you can possibly go out of your own mind for a few days. Yes, literally. You can go manic to the point where you can barely remember your own name.
The protocol included two drugs that had some very intense side effects in some people. But I just went forward, thinking that this would not happen to me. Only about 3 percent of patients have to deal with this. I was in that small percentage.
I got all the creepy side effects. And it was like nothing I have ever been through in my life. I had an intense and very frightening response.
Yes, it was nothing less than horrific. I saw people who were not there. I saw people steal my car but they were not even there. I saw three teens trying to break into my house who were not really there. I saw scary faces on the walls.
The entire situation was insane. I just wanted to get “me” back. I was raging and this is not my personality at all.
I had been told this can happen, but they said it was rare and if it does happen it does not last more than a few days. I didn’t think it could happen to me. But it did.
Despite the horrors, I do not regret taking this treatment because I am now evidently on the road to remission. No cancer. It is virtually gone and I feel great. I do have a couple of side effects that are not fun but I feel well overall.
This treatment is saving lives. It is not going away, nor should it. But what a small population of patients go through is a real nightmare. And while I am feeling so much better, I am still haunted sometimes by the visions I saw during my treatment.
Before I chose this treatment I reached out to experts such as Gwen Nichols, MD, the Luekemia and Lymphoma Society’s Medical Officer to get some insight. She understands how patients feel.
“We play a critical role in advancing cures through a unique combination of academic and pharmaceutical experience,” said Nichols, who also oversees LLS’s scientific research portfolio, patient services and policy and advocacy initiatives.
As I told her, I did not expect to have any of these side effects. The odds at that time were one to two percent.
Nichols said that the two most advanced bispecifics for lymphoma are Glofitmab and Mosenutuzumab.
“These are antibodies that have been engineered to have both the CD20 ligand (similar target) and CD3 on the same molecule,” Nichols said.
She added that patients should read about ICANS, which is the central nervous system reaction that can happen with this and some other immunotherapies. This is where it comes from: CAR T-cells and Bispecific Antibodies. And more are coming.
“It is a rare but frightening response, and it is included in the package insert for both of these products,” she said.
She added that it is temporary and reversible, but there is no long-term data as the trials are still ongoing.
“Given the infrequent and the life-prolonging nature of these therapies, they are deemed safe,” Nichols says. “However, oncologists need to know about these adverse reactions.”
My wife was left to deal with this situation without having been prepared for what to expect or how to manage it. She had no idea this would happen or that it was temporary.
That was frightening for her as she watched me change into a different person. She was fearful for my safety, my life. My delusions put me at real life-and-death risk. It is a really effective treatment, but it needs more study. This is a very important breakthrough, but we still need to learn much more about these kinds of treatments.
Oncology teams, with the help of psychiatric colleagues, need to construct intensive care plans around these drugs when they are this toxic and potentially dangerous. My wife should have been given more help and information at that time and so should any family member caring for someone going through this treatment.
Nichols agrees. And she also believes that this treatment is valuable and will save many lives. I think it may have already saved mine.
I want to learn more about these new treatments and learn why we have to go through this kind of horror to get to the finish line.
The old days of severely harsh chemo drugs are being replaced by better and more effective treatments. I support this. These drugs are already saving cancer patients.
But it is understandably too intense for some patients. We need to find ways to administer these new toxic treatments without scaring patients and their loved ones.
Cancer patients deserve the best treatment to be curative without being horrific.
