I think that all relatively new people aren't aware of some of our stories. I'll try to briefly do an update of mine.
I was a very fit 58 yo. Always played sports. I've weight trained since about 12 yo. I've been a runner since my late 20's. I've run several marathons including Boston and New York. I had picked up my training at 50 telling everyone that "When I died, I wanted to be in the best shape of my life." Little did I know......
In march 2011 I told my wife that I was beginning to feel like I was in my 30's again. That night I was doubled over in pain. Peeing blood full force. I was diagnosed as stage 3 and had my radical nephrectomy a couple days later. The pain was intense so there was no waiting time for me. Talk about a significant life change! But, however, I heard those glorious words. "We got it all." By october 2011 my scan showed mets in my nodes, lungs, liver, and bones. Enough to play both sides in a football game. I was told, "6 months." and there was nothing they could do. So I got another opinion. Then a third, and then a fourth. Same thing.
I tried again. Seeking Il-2 at the Smilow Cancer hospital at Yale-New Haven. I thought it was my only chance. Instead, I was offered a chance to participate in a new clinical trial of MDX-1106. I had nothing to lose. Besides, Il-2 would still be there to try. By spring 2012, 90% of my tumors had disappeared. I went from intense pain and barely walking while on constant percocets to resuming my weight training and running. I was becoming the poster boy for the newly named Nivolumab. What an awesome experience. I was on top of the world. Unfortunately I did have some minor tumor growth which meant I was pulled from the study. That stunk but protocol is protocol and I still had Il-2 to fall back on.
Il-2 is a highly toxic form of immunological therapy. It is usually done in an ICU setting.....by the way if anyone doubts the role of being physically fit, I would not have qualified for the trial or the interleuken if I wasn't so strong and healthy. I helped to keep myself alive....anyway, At Yale there is a unit dedicated to these intensive treatments whereas it is performed in icu's in most facilities. At Yale this drug is given twice a day for 5 days with a week off, then repeated. If after about 3 months there is improvement, the process repeats itself. Then we cross our fingers. Which I have been doing now since fall 2013. The few remaining tumors are small and have been stable. The drugs are still working for me. Incredible. I've been beating the odds. Somebody always does. Why me? don't really know. I am beyond lucky. The big message here is that you have to fight to stay alive. If one treatment fails you, then you must be alive for the next potential cure that is just around the corner. This is sooooo...important.
The clinical trial now called nivolumab may be the holy grail for clear cell renal cancer. It was an infusion every 3 weeks. Virtually no side effects. I got 18 months of heaven. Way too easy. It should be approved for renal cancer in a matter of months. I am thankful and proud to have been involved in this study. Our survival rates have just shot up.
Il-2 is not easy. As mentally prepared as I was, it pyschologically broke me. During my hospital stay I could not sleep. Or eat. All week. Explosive diarrhea. Constant vomiting or dry heaves. Peeling skin from toes to eye balls. This actually glamourizes the intense side effects without getting into just how severe they are. Inhumane and tortuous. After my 4th week of treatment, (which I could only tol. for a couple of days), I was discharged home. I had to beat the psychosis and it took a couple months. Completely broken. I was a pathetic sight to see. But I pulled through and got healthy again. My only cancer treatment from oct 2013 to now is a monthly zometa infusion to keep my bones strong. They don't give Il-2 again once you've been given it but I would go right back into the hospital today if they suggested it. I do believe that we can live through anything that they can do to us. I am fortunate and I know it. Thank you.
When fighting for your life, you take risks. After all why be conservative if your life depends on it. Who cares how many x-rays or ct scans you are exposed to if you are going to die. And I have had a ton of them. Over 20 ct scans in 2.5-3 years. Amazing. I have hair and teeth. As for the drugs,we'll see if they eventualy kill me. Everyday alive now is a gift. What ever the cost.
Maybe some of that has started. This past spring I began having pain in my neck that eventually involved my shoulder and arm. Nothing showed in ct scans or mri's. At first. More testing has shown a brachial neuritis. 90 % of my right upper extremity strength is gone. I also have developed a DVT or deep vein thrombosis in my brachial cephalic vein. So now it is long term coumadin. I can't afford a clot to break free. That could probably end things prretty quickly. I hope this is not what Ron went through.
So now I don't do too much. It certainly isn't safe to ride my Harley. It is difficult to drive. But lets here it for opiates. Because the pain is incredible. Everyday. For months now. Just something else in this journey started by kidney cancer. I have been on a long trip. Far away from, "Does surgery hurt?" or worrying about a 10" or lap scar. That is info best shared among the more recent cancer surgery survivors. I have more philosphical concerns. But anywho,....so goes the battle.
I have 3 years of posts. Some pretty involved regarding my treatments. I wish there was an easy way to pull them together. It all seems surreal. Maybe some new kidney patients would find my journey interesting. Maybe insightful and time saving. I won't be the only one . But I am here to share our stories.
One thing that may be of interest is my expectations and acceptance of this disease. 35 years of working in medicine as a physical therapist has given me a perspective most don't have. I have been a big part of the health care culture. I am familiar with the process and procedures of diagnosis, treatments, risks and outcomes. I know how to do research and find information. I look at death differently. I don't want to die, but I don't think I am afraid of it. Everyone dies from something. I now know what is likely to take me out. I accept it. I am happy to have found a doctor and health care team that I trust. I try not to second guess them. They know far more than I do about cancer. But I make sure that they know that when it comes to muscular skeletal or neurological issues they are in my house. There is a professional trust and I leave the complicated issues to them. I know they care about me. Now we hope for the best. Because until these issues clear up, I'll just stir up issues on the internet.
So, for most of you guys in their first year or two of treatment for kidney cancer, How you doin? Keep your mind open. This forum works best with interaction with others. The goal is to be here after 10 years like the old farts Donna and Iceman. Little details aren't so important. It is the long term big picture we chase.
.....any errors or discrepancies are unintentional and maybe the result of taking too many drugs.....
Share the Karma. Fox loves you. I've rambled way too much.
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.4K Cancer specific
- 2.8K Anal Cancer
- 442 Bladder Cancer
- 307 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 395 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.1K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 669 Leukemia
- 788 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 234 Multiple Myeloma
- 7.1K Ovarian Cancer
- 55 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 533 Sarcoma
- 715 Skin Cancer
- 646 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards