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Renal carcinoma: a 5-yr+ ongoing survival story after stage III diagnosis

Created September 25th, 2021, filed in Kidney (Renal Cell) Cancer

In 2016, I was a very active, exercising 64 y.o. with no serious health problems. I thought. I went in for an annual checkup and mentioned to my doctor of a very mild complaint in the UPPER right quadrant of my torso. It felt like a pinpoint needle prick sensation of intermittent nature, not severe or excruciating, but perhaps bothersome. My doc laughed and said that it was my gallbladder, due to my age. I strongly disagreed, but could not come up with a possible diagnosis. We “debated” for several minutes and he finally told me that he was going to order an ultrasound. I mentioned to him that I wasn’t pregnant, being male, and we laughed at my comment. Routine lab blood work was my usual normal results, I had my ultrasound, and my complaint disappeared before the appt. day was over. I returned to my doctor two days after the ultrasound exam, and my life changed forever on that day. He told me that there was a significant shadow on my right kidney, and I knew right away that it was cancer. I got really worried and scared. I was referred to the oncology dept and had many tests run to determine what the extent of the cancer was, and possible courses of action to take. In all that prior time, I felt great and was completely asymptomatic with no pain, normal kidney function, normal urinalyses and no loss of physical activity.
Surgery was determined to be the best option, but was way more than simply complete removal of my right kidney. It was a triple procedure of kidney removal, and attempting to rid the cancer from the inferior vena cava and right atrium of the heart. Yes, I had to have bypass heart surgery as one of the three procedures done at the same time. It lasted about six and a half hours, and when I came out of anesthesia, I remember telling my urologist, “I’m still alive,” with a smile, since he warned me that the surgery was very serious and that there was a chance I may not make it. He told me it appeared the cancer was cleared, and that some lymph nodes were removed due to cancer involvement. Post surgery recovery was okay and not enjoyable in any manner.
I was able to attend our son’s wedding, but experienced fatigue and shortness of breath during that weekend. Prior to that, I felt getting stronger by the days and progressing well. At the three month testing date, the CT scan showed practically the same picture as the presurgery one, cancer in the vena cava, to the right atrium AND an ominous shadow in my liver. The rapidly growing cancer was back in only three months time. I thought I was a goner this time. My oncologist told me that surgery was not an option, and that the chemotherapy treatments were improving all the time even without radiation treatment. My question to him was, was there a chance of cure with chemotherapy, and he replied with a firm, “No”. So I asked him if there were any chance for a cure, and he replied that there was an experimental study using immunotherapy, but there were very strict protocols and patients needed to be approved by a medical committee to receive the treatment. He added that there was about a seven percent survival rate for success. That was all that I needed to hear so I told him to get me accepted, since I was not going to go on chemotherapy. I honestly prayed and got accepted.
I received high dose interleukin-2 (IL-2) in a three week interval treatment program. It is brutal. The doctor essentially told me that the procedure takes you to the brink of death, and then stops the IL-2, in which your body starts to recover. He gave me a picture of a “fight or flight” scenario with a lion. IL-2 is a natural compound in your body in minute amount that aids your immune defense system. Made in the lab, I was given about 46 million units of IL-2 via CV line every eight hours for a maximum 15 doses, or as long as my body could handle it. I received every dose via IV drip over 15 minutes every 8 hours, being monitored very closely in an ICU setting. The first week, I lasted eleven doses, before my body was shutting down. After stopping, I very slowly began to recover, and I had a full week to do so. In the third week, the same IL-2 regimen was started, and I lasted for nine doses. Then, I completed the treatment and went home to recover.
I mentioned BRUTAL, right ? Aside from the fact that my body was slowly shutting down, I had constipation, severe runs of diarrhea, zero appetite, intense total body itching and rashes, urinal catheter, CV line, IV line, uncontrollable chills and shakes within the hour after each IL-2 dose of which thank heavens for meperidine slow IV push to alleviate them, weakness and questions and doubts of going through the process. Even after six months, I was experiencing some adverse effects especially the body itching and rashes.
I was supposed to receive a CT scan and blood lab tests done after three months which did not occur until five months had passed. All this time I was wondering whether the IL-2 actually helped me, or was I to find out that my renal cancer had spread even more. When I got the results, my blood work results were beginning to resemble normalcy, and the CT scan showed NO visible detection of the cancer. Talk about how elated I was and felt ! I tried to remain calm and realistic about the findings, since I was aware that only time would be the judge, jury and verdict in a cancer prognosis. After six months my doctor told me he wanted to repeat the IL-2 treatment for killing any cancer cell left in my body, so I went through it a second time. BUT, after doing the first week, I told him that I was not returning for the second dosing in the third week, and he understood.
I was on CT scan and blood work every three months for about 2 years, then every six months for 2 years, then annually since. It’s been over five years since the cancer was discovered, and the clear cell cancer appeared to be primitive and very aggressive, and I have a good feeling that it is the primary reason for the so far success of the IL-2 immunotherapy I received. I really believe in immunotherapy as a viable option, and as a last option in my case.
a very grateful J51