Hi Jen! I've been following your WordPress blog for over a year and am glad to see you branching out further onto Cure.
I'm a 53 year old man from NJ and was diagnosed with Stage 4 renal cell carcinoma in June 2015. In addition to my left kidney, which needed to be removed, the tumors had metastasized to my lungs, lymph nodes and my left leg tibia bone. It was actually the pain in my leg that caused me to go to the doctor and, subsequently, find out I had cancer.
As I indicated, my left kidney was removed. In addition, I was given radiation treatment for my leg. For the other tumors, I was given the same Ipilimumab/Nivolumab immunotherapy combination (and later only Nivolumab) as you received, although mine was as part of a clinical trial at Memorial Sloan Kettering Cancer Center.
As I write this, I am presently cancer-free. Unfortunately, there were some side effects:
- During my treatment, the Nivolumab caused a rash on my legs, as well as joint pain and fatigue.
- The radiation killed the tumor in my leg but also damaged the healthy bone and soft tissues in the leg. Prior to my diagnosis, I was an avid runner and I tried to get back to running again. Unfortunately, this resulted in a fracture in the tibia this past summer due to the weakened condition of the bone. In fact, this past week, I had surgery at MSKCC to implant a titanium rod in the tibia to stabilize it.
- Last July, it was determined that the immunotherapy treatments had damaged my pancreas and I was no longer producing insulin. I'm now, essentially, a Type 1 diabetic, and due to the damage it caused, I am now no longer receiving immunotherapy treatments. I am presently being monitored and continue to receive CT scans every 12 weeks.
All that being said, I do not regret going on the clinical trial. The mortality rate for metastasized RCC, using the standard treatment, is 50% within 3 years and 92% within 5 years. Immunotherapy treatments potentially offer to improve those numbers significantly. And as I am one of the lucky ones to have had a positive response to the treatment, I feel confident that my long-term outlook is greatly improved.
Anyway, I want to thank you for sharing your story and wish you the best of luck in your battle! :)
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Hi! Just discovered this site as I will now be getting Cure Mag. I, too, go to Sloan. I was diagnosed in Sept of 2012 with cancer and had right radical nephrectomy at the end of Sept upstate in Orange County. It was stage 3a, grade 3-4. So, I sought out 2nd opinion as I was told surgery only protocol. Ended up seeing Martin Voss and chose to do a clinical trial with Votrient for the year...double blind but I DID get the drug. Despite all of the harsh se's, it was worth it all. I still have another year to be seen for the trial and do far, the cancer has not reared its ugly head, thank God. I know quite a few folks , from my kc support groups on Facebook, that are on Opdivo or just stopped it. One man, a true warrior, was one of the first on this drug and he never had a problem up till this year. He is now off of it and dealing with pain still. It was worth it for him and he has quite a "fan"following ? . I wish you well in your continued scans and pray good health for you!
As a stage 4 lung cancer patient, diagnosed over 5 years ago, this article really spoke to me; the author accurately described the complexities of "surviving" stage 4 cancer, the ongoing treatments, side effects, and uncertainty, versus being a "survivor," which suggests the cancer is a thing of the past. Thank you!
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