It's been a while since my last post, but I still visit and read the board posts often and sometimes respond here and there… So now I'm reaching out in hopes that some of you may be able to offer some advice…
Quick history… Wle and SNB in 2006 for melanoma in my back, was told stage II. No lymph node involvement, didn't do any treatments, just regular checkups. January 2015 diagnosed in-transit met in back, PET shows mets in lungs, small intestine, and some lymph nodes. Started ipi/nivo trial, and was told NED in December. February scan shows two small nodules in right middle lobe, but nivo treatments and prednisone have apparently hurled me into diabetes, so have to stop treatments until glucose is under control. My onc at Hopkins says the two nodules could very likely be just due to infection, so rescan in 8 weeks.
I have nasty delayed reactions to CT scans with contrast… Fevers, nausea, chills, vomiting, shortness of breath… Even with prednisone premeds for days. I have come to have anxiety around scans, but mostly because of how I know they will make me feel, and that I'm going to have to take time off work. I had a scan Thursday and am just now feeling op to putting on clothes other than my pj's. And of course the only way to treat the reaction is with prednisone, which makes my glucose skyrocket (it's been dangerously close to 500 several times this week with all the prednisone!)
Preliminary results of the scan (I haven't seen actual report yet, just saw my onc) show that one of those two nodules in my right middle lobe have disappeared. But the other one has grown, it was originally 6mm, not sure how big it is now, but onc says it's still too small to biopsy without risk of causing harm to my lung. He also says its most likely due to infection. He says I could have breathed in something in the days leading to the scan, and that's what is showing in my lung. But what troubles me is, it's in the same spot as it was two months ago. I haven't been sick with so much as a cold, but have developed a bit of a dry cough. And if it's infection, wouldn't we want to do something about it? He just wants to rescan again in 8 weeks.
He also says we can start the nivo again in two weeks. I've been off the nivo for two months, and certainly don't mind going back on it again. But if this nodule is indeed melanoma, it grew while I was on regular nivo treatments. For some reason, I have a sick feeling about all of this. Maybe I'm being too anxious? Should I just trust my onc or should I seek another opinion? I live in the DC area, so there are other great options nearby, such as NIH, Georgetown, even MSK isn't out of reach. And if I do seek another opinion, can you make any suggestions as to doctors/facilities? Thank you all so much for your help!
.
