I wrote about how I received the phone call from Sloan Kettering stating that I was no longer able to participate in the ipi/placebo clinical trial since I had new evidence of disease. Yes, they were told by my dermatologist that it was an in-situ melanoma. Still, kicked out of the trial, the nurse said.
The Monday that my doctor returned from vacation the same nurse called and said that it was determined that because my new primary was an in-situ, I am not disqualified from the trial.
I was confused about what I wanted to do. I was relieved because I wanted to continue the trial for the reasons I mentioned the other day. I was worried that I needed to do more or that it wasn't worth my time.
Like always, my oncologist helped answer my questions.
When I was waiting in the room for my appointment, my oncologist stuck his head in the room & told me that my scans were clear. Because he knows his patients, he knows I can't relax until I hear the results. (Yes, he also knows he has me spoiled & that the moment he doesn't come in before my scheduled time, I am going to know something is wrong. We've set up a bad habit, but I love him for it.) Then I met with the head research nurse who I had only heard about from my friend Julie. I mentioned to the nurse that I had not met her before, and she said, no, but I know who you are! Apparently, I caused a bit of drama with the doctors at Memorial Sloan Kettering last week. There was apparently a 4 day debate about whether I should be allowed to continue the clinical trial or not. I'm not sure who stood where or why, but it was ruled that because an in-situ melanoma is not invasive, I should continue as planned. The drug is designed to treat metastatic disease and has no control over new non-invasive melanomas which is why we must keep our scheduled appointments with our dermatologists! (Remember, early detection IS key!)
Because the research nurse has a lot of experience with folks on this trial she was able to answer a lot of my questions and provide me with information I had not heard before. For example, remember that weird facial swelling I had on a few occasions after my last infusion in December? Although rare, has seen that in other patients. The joint pain in my hands, normal side effect. The inflammation of my lymph nodes 2-3 weeks after every single infusion = totally expected.
See, these were all things that no one had really talked to me about. I don't call with problems, but I've called Sloan (and headed to my local oncologist in tears) after almost every infusion regarding the swelling. Finally, someone tells me to expect it!
When my oncologist came in for our appointment I jumped up to hug him and told him he's no longer allowed to take a vacation. He said he knows, that when he goes away, I cause trouble. We started chatting later and he said that while his much needed vacation lowered his blood pressure, he couldn't escape wifi so he checked his email. "Every time I checked my email I had 60 new emails & 20 of them were about Chelsea Price!" Oops.
I asked him point blank if he thinks we should continue what we are doing and he flat out said yes.
There was no debate.
Yes, continue what we are doing. In May 2013, it will be 2 years since I started the clinical trial & we have a year to go after that. None of us know if I am getting the drug or the placebo, but whatever we are doing is working for me at this time. I can't risk changing that.
I headed into the Chemo Suite 2 hours behind schedule only to have a nurse that my veins are not used to. Boy, after the lab folks having to use 3 veins for blood and the chemo nurses using 3, I was mildly annoyed.
Sorry, doctors, that I caused a little confusion, but hey, that's why you earn the big bucks, right?! (Best story I heard: Julie asked her doctor how he does this--delivering the bad news--every day. He told her that he does it with hopes of delivering good news! *OK, I may have that a little wrong, we did split a bottle of wine, but that was the main point. He's there to give us our lives back.)
Speaking of Julie......... Not only did I get some QT in with my mom, I also got to visit with Julie and her mom! Remember Julie? (Please continue to pray for her.) We had dinner in Little Italy & laughed, laughed, and laughed! Seriously, the waiter kept laughing at us laughing! There were extra long hugs, maybe a few blinked away tears, but mostly there was laughter.
A good trip, answers to my questions, and meeting up with ladies I admire = one great week.
Have a lovely weekend, friends!