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Voice of Kidney Cancer – Irfan Dasti

Voice of Kidney Cancer – Irfan Dasti

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 kidney cancer survivorship.

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 the kidney cancer ACOR list 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.

Irfan.

 

 

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