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Patient Stories

Voice of Kidney Cancer – Michael Robson

Voice of Kidney Cancer – Michael Robson

I am a 70-year old Australian male living in a small hamlet situated in the wine growing region of the Barrossa Valley of South Australia.  My wife and I will celebrate our Golden Wedding anniversary in January 2019.

There was a time not too long ago when I thought that I would never be able to say that with any kind of confidence.

In the Spring of 2015 (April) I retired from working at the age of 67.  My wife and I had plans for not growing old gracefully.  We bought a boat & jet ski as we live close to a major river. In the summer of 2015 we actually went on 5 weeks holiday travelling the waterways from Paris to Budapest. That holiday left us making plans for a return to France with the possibility of staying for a year.

But all of our plans came to a halt when at the start of 2016 I began having problems relating to my prostrate – or so I thought.  I put up with it for a few months and finally went to my family doctor in the first week of April.  He sent me for an ultrasound.  The ultrasound turned into a CT Scan due to it finding a large 11cm tumour on my right kidney.

My family doctor forwarded me to a Urologist surgeon. The surgeon explained that I should undergo a radical nephrectomy of the right kidney as soon as possible.  During my final pre-op discussion, the surgeon said there was no visible evidence that the disease had metastasized and therefore he felt that the removal of the kidney could provide a cure.

On June 9, 2016, I had my first CT Scan and post op-discussion with the surgeon following my radical nephrectomy. Pathology had found traces of cancer in my lymph nodes as well as the surrounding fat tissue. The sucker had also invaded my Inferior Vena Cava. This of course was devastating news.  A follow-up CT scan in September found cancer in my lungs as well as additional lymph nodes and I was referred to an oncologist.

During our initial consultation, my oncologist indicated that there was a clinical trial opening soon and he felt that I would be an ideal candidate. The clinical trial would involve the immunotherapy drugs Nivolumab (Opdivo) and ipilimumab (Yervoy) given in combination.

On February 10, 2017, I received a phone call from my Oncologist telling me that I had been accepted to take part in the trial and I received my first infusion on March 15th.

My first CT Scan after the first four infusions of the two drugs was on June 5th and my oncologist was thrilled.  He could not find any of the tumours that had previously been visible on the scans.

As far as he was concerned I was showing a “Complete Response.”

I have now completed 20 infusions and 5 more CT Scans with all indicating NEDS (No Evidence of Disease).  My Oncologist says that no one knows if it is necessary to continue the treatment but as I have suffered no serious side effects……Why not?

My side effects have been minimal…….only some itchiness that I have been treating with moisturizing cream and occasionally a dab of steroid cream.

I was trial Participant No 2 on this trial which I believe was 102 strong trial.  I was also the first to finish the 12 month trial…..I don’t know what happened to No 1……I assume whoever it was did not have the desired effect.

In discussions with my Oncologist he had indicated that only 9% of the trial participants had a total response, with about 36% showing a partial response.

I consider that I have won the lottery of life to be in the 9% where a complete response has been achieved.  I asked my Oncologist for his opinion with regards to how long he felt that I might remain NEDS……..His response……you will probably die of something else…..eventually.

I know that with continued research Immunotherapy is going to be the way of the future, and I am positive that results will continue to improve as more clinical information becomes available.

Today, the combination of Yervoy and Opdivo is approved in the U.S., Canada and Australia for treatment of first line metastatic kidney cancer, thanks in part to pioneers like Michael Robson who bravely participated in clinical trials. Most recently, Dr. Jim Allison was awarded the Nobel Prize in Medicine for his discovery of the mechanism that led to the development of these therapies.

We’re grateful to Michael for sharing his story with KCCure.

 

 

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