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April 7, 2014 at 10:34 pm #21914
Has anyone ever gone through TIL (tumor infiltrating lymphocytes)? If so, did you need to seek more treatment? I underwent the treatment at the NIH (National Institutes of Health in DC)in August. All my tumors miraculously shrunk however, I have several small ones that got around the TIL therefore, I had to seek more treatment. My NIH doctor team suggested I find a PD1 trial. After alot of searching and visits, I recently was accepted in a PD1/Anti KIR trial. I just started it. Had my second dose. Wondering if anyone that has gone through TIL needed more treatment and if so what treatment did you do? Or wanting to get feedback from those on a PD1 trial?
JackieApril 8, 2014 at 4:30 am #64063
I completed TIL about 1.5 years ago. Some tumors disappeared, others grew slightly (notably a brain met which almost finished me). Following TIL I have done Ipi, and am now on Merck’s anti-PD-1 drug (and doing very well). Hope this helps!
Ben.April 8, 2014 at 12:22 pm #64064
When did you start PD1 and Are your tumors shrinking with PD1? Did you have SRS (radiation) for the brain met or did IPI get it? What dose of Merck Pd1 are you getting? I am getting 3 mg of BMS Pd1 biweekly and .3 mg of anti KIR. Can I ask what size your tumors were before you did the TIL? Mine were quite large 7.5 cm by 3.5 cm, 2.8 by 1.5 and so on. The Til helped my large ones shrink and cleared tumors from my lungs. As I have been chatting with others that did the TIl and doing well several still have some in the mediastinum (like me) that are being stubborn. Maybe that is a common area. Not sure. Do you have any there? I am happy to hear you are doing well on the PD1, I just started the trial and am a bit anxious and hoping this gets my intruders.
JackieApril 8, 2014 at 11:42 pm #64065
I started PD1 about 45 weeks ago. I did have gamma knife before TIL on 10 brain lesions. I really don’t think the Ipi did anything for me, but I am glad I did it, otherwise I wouldn’t be able to be on the Ipi-refractory anti PD-1trial that I’m currently on.
TIL completely removed a liver met, and shrunk some others, though new ones did appear in various lymph nodes, and small bowel which required (another) bowel resection. As of my last scans, PD1 has shrunk my tumors by about 70%, and still slightly decreasing each scan. I don’t know if I’m on the 3mg/kg or 10mg/kg as it’s randomized. I’m feeling great, and able to maintain my very active lifestyle.
Good luck going forwards! Really hope it works for you.
Ben./April 9, 2014 at 1:18 pm #64066
I am glad to hear you are handling the treatment and an active lifestyle. And I am excited to hear the PD1 has shrunk your tumors 70% I am hoping for the same. I get my first scans early May. Please keep in touch and I will do the same. Best wishes for you too in this trial.
JackieApril 10, 2014 at 3:17 am #64067
Thanks Jackie! Wishing you all the best too!
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