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June 7, 2014 at 12:28 pm #22020cherisParticipant
I haven’t posted for four years when I was stage IIB. This past year was a year of blood transfusions and tests, and all doctors insisting that it was not melanoma. Surprise! yes it was. I had a tumor removed from my small intestine along with eight inches. My MRI and scans this week were clear. My doc wants me to start Ipi, but I’m wondering if it would be better to wait for PD1 when it becomes available in October. Any experience or opinions on this situation? It’s a secure feeling to have this place to turn to. Thank you.
CherisJune 7, 2014 at 4:28 pm #64653Catherine PooleKeymaster
I’m sorry this is your circumstance, but you are right that we are here to support you. Are you BRAF neg or positive? I am not sure we can be so certain that Pd1 will be available in October, so you may want to go ahead with the IPI, or we can look at trials for you. Are you treatment naive, never had previous therapy? If so, there could be some trials you would be eligible for. But please let us know your BRAF status and we can work from there. I would be happy to do so by email, personally as well. Also, where do you live?June 7, 2014 at 5:09 pm #64654erinmay22Participant So sorry to hear about the advancement to stage 4… As Catherine mentioned, good to know if you’re BRAF +. I was. In May 2012 I had a tumor show up in my small intestine also. They did zelboraf first to see if we could shrink it. It did start to shrink, but then started to grow again. I had it surgically removed in Oct 2012. I did have some lymph nodes that showed up around it so the week before surgery I started Ipi.
It might not be a bad idea to get something started vs. waiting for PD1. There is some talk about the 2 together as a great 1-2 punch since they work just a little differently. Best of luck. There are some great resources here…
ErinJune 7, 2014 at 9:23 pm #64655BNP68Participant
Sorry for your latest development. I also had a recurrence in my small intestines and had about 12″ of my small intestines removed in May 13. In regards to the small intestines resection I am doing great and don’t even notice any difference from prior to the surgery. I was curious to know if you are now NED or if there is still disease present after the surgury. That would probably play a big part in the decision process for the next step. Ipi would probably be a pretty good choice in the adjuvant setting if you are able to get that. As others have said finding out your braf status is important.June 8, 2014 at 12:40 am #64656cherisParticipant
Catherine, I am BRAF pos., but the onc. wants to save that for any future recurrence since I am NED. I live in Pittsburgh and go to UPMC Hillman. I’m concerned about Ipi since I still have some diarrhea from the intestine surgery, plus stomach problems these past few years. Neither issues are severe, but not a good start for Ipi. Did you mean trials for PD1? Thank you all for your help.
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