When Irfan was diagnosed with stage 4 kidney cancer, doctors left him with little hope. But he perservered and sought out treatment with high dose IL-2. Eight years later, he’s still free of disease. Read his amazing story of about being a long-term stage 4 kidney cancer survivor.
My name is Irfan and here is my story.
If you are reading this, chances are either you or a loved one has been affected by dreadful news. But, let me assure you that there is hope and I am a living proof of it.
I was diagnosed with stage 4 renal cell cancer on the eve of Thanksgiving 2008.
A brief background. I was 42 years old at the time, a dentist with a successful small private practice enjoying life and taking it easy. Non-smoker, eating healthy and exercising regularly.
Beginning of June that year, I started getting more tired as the day went by, felt like taking naps in the afternoon and just a general fatigue. I went to the primary care doctor and he said everything looked good except that I was anemic. He prescribed iron tabs and told me to come back in 6 weeks. When I went back in 6 weeks, I found out that I was even more anemic than before. The doctor ordered an endoscopy and later a colonoscopy to rule out any GI ulcers. None were found.
Next he ordered a CT scan of the torso in November and that’s when I found out that there was an 8 cm lesion in my right kidney and two to three lung nodules in both lungs. The news dropped like a bomb and the worst thing was that it was given to me on Thanksgiving eve at 3 pm. I had no one to call or ask any questions for the next 4 days so I naturally turned to internet.
There was nothing but doom when I googled stage 4 kidney cancer. Nowhere did I find what I was desperately looking for, meaning the stories of people who had beaten cancer and were still alive and well. I think those were the four worst days of my life. I didn’t inform anyone, including my family because I desperately wanted to be normal and also not scare my elderly parents at the time.
The following week, I contacted the surgeon that was recommended by my pcp and he came highly regarded. The staff was great and I was soon scheduled to have my kidney removed at MGH in Boston.
As soon as my kidney was removed, I started feeling 100% better. All the feeling of tiredness was gone and I started believing that my lung nodules had disappeared since the mother ship (right kidney) had stopped sending them a green signal to keep on growing.
My oncologist felt the same way but when I went back in three months for a follow-up CT scan, it was noted that now the nodules were growing in size. The oncologist suggested we do systemic therapy and recommended starting a targeted treatment.
Luckily for me, I had started reading patient stories and came across an article by Steve Dunn who was treated with high dose IL-2 and responded with complete remission. I started looking for oncologists that would offer this treatment but everywhere I went, I was told no for one reason or the other. I remember one doctor coming in the room, not even making an eye contact, and telling me that he only does this treatment for Olympic athletes.
Right around that time, I started having some neurological symptoms. Like dizziness and vertigo and just a feeling of not being well. Every time I told my oncologist about it, he dismissed it as stress.
In January of 2009, my worst fears came true. An MRI of my brain revealed multiple lesions. This is where I lost all my hope. I knew that high dose IL-2 would be off the table because a brain metastasis is one big contradiction for the treatment.
The first radiation oncologist suggested whole brain radiation to treat the brain lesions. But after doing some research, I found that stereotactic radiosurgery (SRS) is better for kidney cancer mets to the brain. I was treated with SRS in February of 2009 and it was successful in eradicating all the brain lesions.
Six months later, I met with Dr. David McDermott in Boston. He agreed to let me give high dose IL-2 a shot. Like Steve Dunn, I was a complete responder to this treatment. October of 2009 was the last treatment I ever received for kidney cancer.
I was told to come back every 3 months for 2 years, then every 6 months for the next 2 years and then once a year after that. I remember vividly thinking I’d never reach that point. But it’s now been exactly 10 years and I am still free of disease.
I am living life, working part time and counting my blessings. God bless.
If you’ve been diagnosed with stage 4 kidney cancer, learn more about the treatments that are FDA approved for kidney cancer.