Mar 09, 2012 - 12:22 pm
Hello everyone. I've been a lurker on your discussions for the past couple of weeks and was a little intimidated to submit as everyone here seems very knowledgeable about options, tests, labs, etc. and I'm pretty much clueless. But I do believe sharing information and getting it out there is part of the key to some day find answers. And since my husband isn't ready to post just yet, I've decided to start without him and perhaps he'll join in.
I'll start with a little history. First, John, my husband, was diagnosed with Stage IV kidney cancer on October 15, 2011, after being referred to an internist at Johns Hopkins University in Baltimore. The reason for the visit was weight loss, which had been occurring since the beginning of the year. However, other than weight loss and an occasional cough, he felt fine. And the cough didn't cause great concern because his siblings (3 sisters and brother) all have a cough of unknown origin, though they have been tested extensively.
Anyway, since the weight loss started John has seen his primary doctor numerous times and had blood work done, thyroid testing, colonoscopmy, endoscopy, xrays, etc. and everything was perfectly normal -- excellent in fact. However, the weight loss continued and his primary suggested he see an internist.
His appointment with Dr. Wooster, a Hopkins Internist, was scheduled for October 14, 2011. Dr. Wooster ordered catscans amd scheduled John to return in a week. But later that same day, he called John and asked him to meet with him at noon the next day and to bring me. When John called me at work and told me that I became physically sick, knowing this couldn't be good.
The next day Dr. Wooster showed us the catscans with a very large tumor on the right kidney and several nodules in his lungs. Next meeting was with a renal surgeon at Hopkins, Dr. Allaf, who scheduled kidney surgery on November 1. John underwent a radical nephrectomy of his right kidney.
Next visit was with Dr. Hans Hammers of Hopkins who after several visits told John he believed he was an excellent candidate for IL-2 therapy. So his first high dose IL-2 treatment began on January 3, 2012. During the first round he had 14 doses, an incredible feat according to Dr. Hammers. However, once he came home that weekend, he experienced edema, terrible itching, extreme fatigue, etc. for several weeks. In fact Dr. Hammers postponed his second round which was scheduled to begin on January 26 to January 31. During his second stent, he received 10 doses. Again, upon coming home from the hospital, the side effects were tough. Again terrible itching, some nausea, thrush, and again extreme fatigue. Dr. Hammers commented that John was kind of unique in that his body tolerates the quantity of doses well, but the side effects and the length of time it takes for him to bounce back are longer and more difficult than it is for most.
Now we're waiting to have the catscans to see if the IL-2 has helped. He's scheduled for March 15. Do you believe he chose the "ides of March?" But it's also his mom's birthday, hopsfully that makes it okay. . . Will keep you posted. Sorry if I've left out pertinent info; I'm new at this.