Immunotherapy: A Trial by “Flu-Like Symptoms” and a Lot More

When I was diagnosed with Stage IV kidney cancer, I just assumed that the doctor would take some sort of medically-approved SMALL melon baller, scoop out the bad stuff, and send me on my way, never to sin/cancer again.  That was my first plan, and one which couldn’t be.

First of all, there is no medical melon baller, and certainly not for a tumor the size of a big orange.  No tiny key hole scar for me, but a large incision, and the removal of my tumor, my kidney, an adrenal gland, and  a few local lymph nodes for good measure. Though the scan seemed to indicate that the tumor was scrambling up my vena cava, a big vein heading toward the heart, the scan was more ambitious than the tumor.  The pathology confirmed that my cancer was “clear cell”, which was good, as it is the most common subtype of kidney cancer.

Bad news.  There were hundreds of tiny mets all over my lungs,  the CT scan showing tiny evil snowflakes throughout my lungs. “Too numerous to count”. Impossible to remove by surgery or radiation. Systemic metastatic disease–very bad stuff– and the reality that  visible mets were outnumbered by the tinier ones still unseen in a CT scan.  Only one medication was approved for advanced kidney cancer in 2004. It didn’t really work for many people, maybe just 7%, according to the clinical trials that had led to its approval 12 years earlier.

This treatment was High Dose InterLeukin 2, brand name Proleukin.  No one else seemed to have ever heard of it> When I asked if they had heard of  “interferon”, most people nodded politely.  That’s how much general awareness there is of the life-saving regimen recommended to me.  Most doctors and few oncologist have never seen a patient in treatment with it.  Not the popular choice–but none other treatments existed!

Statistically, the odds for a good response were pitiful, but so were the odds for my getting kidney cancer in the first place.  The “Why me?”s became “Why not me?  Someone has to be in the 7%!”.   I talked to a patient who had gone through the treatment. She described it as “Hell”. I winced visibly, and she nodded in sympathy.  Still she was alive and at a meeting. Given the chance, she said she would do it again!   Thank you, Paula, for your courage.

Proleukin is essentially a synthetic version of your body’s immune system reaction protein. Thus, the patient reacts with a wide range of immune responses–all in hopes of revving up the immune system so that it recognizes and fight off the cancer cells. Those cells have escaped detection by the immune system, disguised as “evil twins” of the healthy cells.  If the Proleukin could empower the immune system to be super sensitive and aggressive in finding the tumor cells, maybe the cancer would be destroyed.

This is not traditional chemotherapy, in which all the cells are targeted for destruction, with the fastest-growing ones–the cancer cells–being the most vulnerable.  Chemo patients are bombarded again and again, in a delicate balance between killing the cancer cells and keeping the others and the patient intact.  Many people stay on chemo for months and months. But no chemo ever worked for my cancer.

My treatment was to happen in five-day spurts, offset by days and home to recover and then to return.  Roughly, I was to be in the hospital one week, out a week, back in for a week, and then rest and await the verdict delivered by a CT scan.  Good news meant I could be permitted to return for another set of treatments.  Bad news–go home and look for another clinical trial and…no one wanted to speak of it.

My mets were shown to be fast-growing after a series of CTs , so even  stabilization of  growth would be considered ample reason to return to the hospital. ” Just slow them down”, I prayed, “Let me back in the hospital.” Determined that even if the doctor could not whole-heartedly recommend it, I would go back for more.  Of course, that was before I had the Proleukin and understood what would happen.

Had Proleukin not been effective for me, I would not be writing this. Still I have little independent knowledge of all that I endured during the treatment.  My family usually says that I am happier not knowing, that it was brutal, that it took me to the edge of life.  No wonder they don’t want to talk about it.  But I was in a excellent hospital, with experienced staff, having been considered to be healthy enough to get through the treatments, and determined to live, what ever it took.

This medication is delivered by IV, through a port which led a tube straight into my heart, a channel to get that and all other meds to me as quickly as necessary.  Doses are given every eight hours, unless the patient is unable to tolerate the next dose, needing to recover from the reactions to the previous.  Over the five day period, a patient might get 14 doses, though few ever do.  In my case, I received an average of nine doses per week, and my length of day was twice extendedby a day, so that I could recover before I was sent home to recover some more.

I remember arriving home, rather suddenly, it seemed. No memory of the drive, just a vague recollection of  walking down the hospital corridor with a doctor and trying to read a sign.  Apparently that was a bit of a test, which I passed, because I was home.  Home–to recover and praying do it all over again.