Today was one of my quickest infusion days at Hopkins: 3.5 hours from entry to exit. My labs were ready since I had my blood drawn on Tuesday (I spent most of yesterday at the FDA). Today I chatted with Dr. Hahn and two of his fellows - one from Brazil and the other from Portugal. I mentioned that I had attended the SITC conference on November 7, and learned just how quickly changing was the field of immunotherapy cancer research. Dr. Hahn had a conflict and was unable to attend the conference, but agreed that the field was white hot.
As part of his usual checkup, I said that I recently had noticed a light rash on my lower legs, especially around my calves. My legs badly itched as soon as I put them in a bathtub of hot water, or the hot tub, but otherwise were fine. He examined the rash carefully, and asked if I had a rash anywhere else. I replied that it did not think so, although at times I would catch myself scratching around my neck. He did not see any visible rash around my neck, and said that it could be nothing, or it could be an indicator that my body was beginning to react to the nivolumab. He urged me to let him know if the rash got any worse, or if my body showed any other unusual symptoms. Barring any toxicity issues, he said that he agreed that I should keep going with the treatments. I was already scheduled through December, so we scheduled infusions through the end of February.
I waited in the infusion waiting room for about an hour for a chair to open up, but once I was seated the drug was ready and waiting - a first! Better yet, the infusion nurse said that I was no longer required to have my vitals taken three times during the infusion. My port was quickly accessed and and in 70 minutes I was done.
Each day Jennifer and I give thanks that my cancer has retreated and that my life has been extended. Each day is a gift from God, and I try to live my life with an attitude of gratitude.
Ken, I am a Urothelial Cancer patient from Rhode Island. I am also on Nivolumab. I have gotten a very itchy 'something' on my calf a few times. I have a more frequent one on my left forearm. There is no sign of visible sign of redness or typical rash at either location. It's just itchy as hell when it occurs.
ReplyDeleteI have metasteses to my lungs and liver. Scans kept showing progression so we stopped scanning since we read about your response at 13 weeks. That will be January for me. I guess I will know then.
Something must be working because I feel relatively good and can handle significant exercise.I have always tried to keep in shape and eat well. I had my right kidney, adrenal gland and assorted lymph nodes removed in Jan of this year, with the the standard platinum junk chemo until June.
If I can be of any help to you or anyone with our type of cancer, email me. My wife has been a subscriber and I just signed up. Look for barney.....
Barney
Ken - so glad to hear you are doing well. It's remarkable that you are still with us given the extremely grave (pardon the bad pun) prognosis you got in 2012. I'm hoping that they will continue to advance the science and stop treating those of us with BCas as the bastard children of cancer. I guess there isn't enough money for those SOBs to even acknowledge us. At this point, I'm pretty sick of pink.
ReplyDeleteKen thanks for your blog. I am also on my 20th dose being treated at Sloan. Had too many Tumors to count that ended up in my liver now 95percent are gone. Also diagnosed 20 months ago and still alive..should have been gone along time ago. When these drugs work they work well..keep up the good work and keep the faith!!
ReplyDeleteKen I received your name and blog from one of your former students after I told him my dad had recently been diagnosed with bladder cancer. He is also going to be receiving treatment from Dr. Hahn. I would love to speak with you via email if that is something you would consider.
ReplyDeleteStephanie, I'd be happy to exchange emails. Please contact me through Inspire at www.inspire.com/kbros, and we can exchange email addresses. Best wishes to you and your dad, Ken
ReplyDeleteHi Ken:
ReplyDeleteI love reading your blog - you are a great inspiration to so many. I know Johns Hopkins and Dr. Hahn and his colleagues well. I am so inspired by your story. Thanks for sharing with such grace, humor, humility, candor and hope. Love your blog!! May 2016 be a great year for you and your family.