Dec 19, 2013 - 8:52 pm
I am a newbie to this site but unfortunately not a newbie to cancer. Up until about 3 months ago I proudly stated that I was a three (3) time cancer survivor. I had Skin cancer in 2006 with surgery to remove a chunk of my chest. Kidney cancer in early 2008 with surgery to remove left kidney and renal gland, followed up with a late 2008 surgery for Prostate Cancer which resulted in the removal of the prostate. The three (3) cancers were not related---lucky me.
Jump forward and I am one month shy of being five (5) years cancer free but feel a little awkward and tired so I get an early checkup and POW. There is something on the CT scan that looks bad. Well more CT scans followed with some blood workups and then a Pet Scan followed up by two biopsies and then more visits to the Oncologist with an eventual diagnosis we didn’t want to hear; Advanced Stage 4 Metastatic Renal Cell Carcinoma. Cancer is back and in my thyroid, in two (2) lymph nodes, and with multiple nodules (some 12+) on my lungs. Well it just felt like someone kicked me in the gut or lower.
Well I felt sorry for myself for about 2-3 minutes and then decided it was time to fight again. I decided I was going to live and live long so it was time to figure out what to do and that was find the cutting edge, most up to date solution that was out there and sprint to it!
The Oncologist recommended Votrient but suggested I see another Oncologist at another Hospital to seek additional advice and get info on IL-2. In between visits to the original Oncologist and the new Doctor I searched the web. I educated myself to learn what was out there. What worked, what didn’t and why it didn’t. I read Blogs and spoke to family and friends seeking support and advice. Early on we decided to tell our family, our friends, and most important our three kids. We wanted and needed for them to know. I learned the first few times we went down this road that it is harder to hide it then to embrace it. Not that anyone wants to embrace cancer but we just didn’t want to play those games if you know what I mean. It takes up way too much time and energy to hide it.
Well met the new Oncologist who confirmed the news and we discussed my options including IL-2. He noted that even though the cancer was back I lacked the normal symptoms, that I was in good shape (over weight yes) but organs and blood are good, and that I could always “fall back” to Votrient or IL-2 Therapy. He told me to relax for the weekend and get away from the computer and that he would do the “heavy lifting” and make a series of calls to John’s Hopkins, U of Penn, Sloan Kettering, Fox Chase, and Thomas Jefferson Cancer Centers to see what cutting edge technology was out there and if it would be good for me. He was a God send. I don’t know how many Doctors would have done that but he did!
Well he referred me to another Doctor in what would be a third different hospital, a third different Oncologist, and again we went through my history and current situation. I should say that prior to my visit I received a call from their “Nurse Navigator” who made sure that they had all of my records, tests, and pathology slides BEFORE I walked in the door. When the visit started they already knew what was going on and so we were able to focus on how to move forward. They were very organized and I was willing to do whatever we had to do. I didn’t and don’t care if I have to see 500 hundred Doctors. We were not giving up!
Jump forward a bit and it would seem that they have a future trial and that I may be a good candidate for this trial. They needed someone with RCC Stage 4 who has NOT gone through any programs with regards to chemo, radiation, or any type of drugs. They wanted someone pure. Never thought of myself as pure at the age of 53 but hey if it works.
So what is the trial? The trial would be the use of Nivolumab AND Ipilumaab together/same time. Seems they are having great success with these drugs in the melanoma world and that they think it will work for RCC. I sure hope so. So now I am waiting. I am waiting for the Clinical Trial Protocol to be finalized. Once that occurs (which means the Hospital, Doctors, and Pharmaceutical have defined the trial and signed off on the specs and legal crap) we begin pre-trial testing to make sure I am a good candidate and meet their needs (and hopefully mine).
Well the wait has now been three months with my cancer growing slowly (less than 1mm per tumor) but still growing. I am getting a bit more tired and a bit more stressed but looking forward to being able to say I am a 4 time Cancer Survivor. They have given me several scripts for tests and blood work and have scheduled me to come in on January 28-if not sooner. I have had one new CT scan just to make sure things aren’t moving too fast and it seems that things are OK.
I will try and come back once the trial starts to let you know how it is going.
As each of you come in to this Holiday Season remember to live and try not to get too down (I know that it is easier said than done) but enjoy the moments that we have. Talk to those that maybe you haven’t spoken to in a while, hug your kids, your significant other, and keep kicking ass! We will win!!!!!