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January 10, 2015 at 3:41 pm #22306JoshfParticipant
HI- I haven’t posted here much but stop by now and then to see what’s going on. To give everyone a quick snap shot:
Diagnosed April 2011 with lump under rt cheek. See melanoma specialist thinks this may be rare primamry dermal. Have WLE and SNLB. Barely get clear margins and SNLB neg…just follow up scans.
Sept 2013: Find new lump by scar… surgert confirm recurrence. PET shows lung nodule..Stage 4.Enter Prometheus Labs trial combo of IPI and IL-2. Do ipi first and IL-2 in Jan 2014. Do 22 of 24 bags. Feb 2014 declared NED and complete remission.
Past week I had MRI of small bump by scar. I wasn’t too concerned because it didn’t feel like recurrence last time. Well results yesterday say 4.75mm nodule that can’t be ruled our for recurrence or most likely recurrence. Surgeon wasn’t real clear on that and of course I’m just dazed.
Does this mean I failed ipi and/or IL-2? Or it has stopped working? Or should I have had surgery again just to remove tissue as this is the “root area” of my melanoma?
Anyway I have surgery scheduled for Tuesday. Surgeon said he wants to be aggressive and have pathologist test margins during surgery so we get it all. Should I have SNLB? It’s not confirmed melanoma but I’ve been down this path before. Should I get 2nd opinion? Just not quite sure what to do. I want this out but I want to do it right.
JoshJanuary 10, 2015 at 6:57 pm #66061Catherine PooleKeymaster
Welcome back! You mention you are going to a melanoma specialist and there are so few of them, I wondered where? It does sound like you have disease progression and that IL2 and IPI were not good therapies for you, and they do have fairly low response rates of 6% to 20% for IPI at the highest. So I would get another opinion, discuss the SLNB as I am not sure they would do this and what it might tell you that you would proceed differently and definitely order up the Keytruda Pd1 which is a bit higher than Opdivo (38% to 32%). If you tell us what part of the country you live in, we can make suggestions for a specialist. Take care! Oh and btw, surgery is one of the best ways to get rid of melanoma tumors, so that is definitely a good idea when it is possible.January 10, 2015 at 7:37 pm #66062JoshfParticipant
Thanks Catherine. I’m in Chicago and go to Oncology Specialists at Lutheran General Hospital. Dr. Jon Richards & Dr. S. Hallmeyer are medical oncologists. I would say they’re regional experts, obviously not doing what Weber and others are in the field. Dr. Gajewski is here in Chicago and I’ve never seen him but maybe an option? Surgery is Tuesday and then of course…see if and where it has spread.January 10, 2015 at 8:47 pm #66063Catherine PooleKeymaster I have heard good things about Tim Kuzel at Northwestern, here’s a link: http://cancer.northwestern.edu/public/why_northwestern/specialty_programs/programs/melanoma.cfm
I’d check them out if you have any doubts about your current doctors. You could get an opinion at SLoan Kettering from their team if you wanted an expert not too far away.
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