Written originally on 02/11/2018
Hello All, I posted my story on Inspire before. I got invited to this Support group and I wanted to share this with you.
Here is a summarized description of what I went through and where I am at today. I am 48 years old.
December 2016 started to vomit in the morning. Started to lose weight.
January 2017 continued vomiting and started having fever everyday in the afternoon and for around 4 to 5 hours. 102.5 degrees was the average.
January 2017 / Feb 2017 same as before adding night sweats. Loss of appetite and losing more weight. Lack of energy, started to feel like I did not want to do anything.
Doctors started tests in January and finally a ct-scan with contrast. On 02/08/2017 received a call from Oncologists. 4-inch tumor on my left Kidney, nodes in the lungs (large ones).
Went to USC to see surgeon who put me on the waiting list immediately. March 9th 2017 my left kidney is removed. Doctor went in the “old fashion way” (means a big cut, L shape upside down, in my stomach) to inspect all my organs to ensure nothing else was compromised.
SURGICAL PATHOLOGY REPORT Rena cell carcinoma Tumor Size: 11.5 cm in greatest dimension Metastatic kidney cancer
During my recovery (very tough!) I started to do research (lots of it) of what I could do to fix my condition.
- USC offered IL-2 with less than 7- 10% success rate – treatment is HORRIBLE. No thanks!
- Found treatment in Europe having great success. Helping the immune system
- Went back to my original oncologists and he offered a clinical trial helping the immune system. Nivolumab and Ipilimumab.
After Surgery and before the start of my clinical trial I did a ct-scan. Dated 05/26/2017 revealed MULTIPLES nodes in the lungs (covered) 3.8 cm and 3.4 cm the largest. My symptoms started to come back. Unable to recover weight...
At this time, I also hired a nutritionist (who had testicular cancer that metastasis to the lungs) and a personal trainer.
Clinical trial started on 06/02/2017… my 1st infusion. All good, no side effects.
Going to the gym twice a week (even though I did not feel like going) and keeping a very strict diet
2nd infusion 06/29/2017. All good, no side effects
3rd infusion 7/27/2017. All good… no side effects
Started to feel better. Gaining weight, gaining muscle and strength. Going to the gym twice a week (taking it VERY slow). Started to play tennis again
CT Scan 08/16/2017 results came in… drastic change. Only 2 Nodes per Lung longest one measuring 1.0 cm.
4th infusion 8/28/2017. All Good no side effects
Started car racing again (one of my hobbies)
5th infusion 9/21/2017. All good… no side effects
CT Scan 10/16/2017 results came in. ALL CLEAR! We are on remission.
6th infusion 10/19/2017. All good… no side effects
7th infusion 11/16/17. All good… no side effects
CT scan 12/12/2017 – all clear.
8th infusion 12/13/2017. All good… no side effects
9th infusion 1/11/2018. All good… no side effects
10th infusion 2/8/2018. All good… no side effects
Doctor tells me we are going to continue...
I started to recover strength and muscle. Able to play tennis normally at the same or better level than before. Won the last 2 regional car races at the end of October 2017. I did the national race, came in 2nd place and got the lap record!
Did I feel depressed? OF COURSE! Stage IV cancer! Who doesn’t? Did I look at the ceiling at nights? YES! Did I think about death? The people I love? YES, OF COURSE. I think you are allowed… BUT as you can see I found a way through… I decided to fight and we gave it all we got… (my wife, my family, people closed to me, my doctor and his team, my nutritionist, my personal trainer, my massage therapists and more).
I want to share my experience… this is a summarized version. I changed my life to fight this thing... I have decided to “pay it forward”. Help as much as I can. I will contact groups, hospitals, etc. that want to hear my “not so summarized” version. I will not charge and I will pay my own expenses… we just need to coordinate so it does not affect my line of work. If possible I will travel anywhere in the US and WHY NOT anywhere in the world.
QUICK UPDATE as of 10/7/2018
I have continued my treatment with no side effects. CT-Scan continue now every 3 months (trying to make these every 6 months or perhaps once a year). Last CT Scan reveal a 0.2 cm (2 millimeters) dot in one of my lungs… Doctor is not worried as it could be just a image error (so small), but we will keep an eye on it on the next scan. I don’t feel anything… feeling great!
I have continued my diet / nutrition program to the letter.
I continue to go to the gym twice a week. Play tennis at least once a week (singles) and continue car racing. This year I am leading the Porsche 944 Southern California championship with 10 wins out of 12 races. Just came back from Circuit of the Americas in Austin TX where I participated in 2 National events. I was crowned National Champion of Time Trail!
We also went to the Kidney Cancer Association meeting in Chicago 3 weeks ago… great event, met great people and other survivors.
I have shared my diet with more than 20 other members... it is long so I send it via email. But remember that this is my diet... tailor made for me... you should always consult a professional for this (like I did).
Hope this helps and happy to share my story so far with you!