Has anyone mentioned Dr. Eric Liu, Rocky Mountain Cancer Center to you? He is an expert in NETs and is in Denver.
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Thank you so much for sharing this with us!!
Hi. Sorry it took me so long to reply. I traveled on Saturday to a NET conference at the University of Iowa.
My son also has grade 2 well-differentiated PNETs with Mets to liver, and I just met another family with an 8 year old boy with the same diagnosis (stage 4, grade 2 PNETs). My son has only received monthly Lanreotide shots so far, but we are looking into the possibility of PRRT. The 8 year old boy has tried CapTem with no response, so now they just started PRRT. The 8 year old has a lot of stomach pain, so they are looking to shrink his tumors quickly. Did the PRRT help your daughter?
Hi. My son has well differentiated, grade 2 NETs. He is currently only receiving monthly Lanreotide shots and feeling pretty well. He is going to have another MRI and possibly a gallium scan in the near future, so that will determine if he needs to progress to another treatment.
You mentioned that your daughter has already received Lu-177 which I believe is PRRT – correct? If so, you are lucky that you have access to that where you live, because it is not yet approved in the U.S. We are waiting, and hopeful, that it will be approved soon.
Great to hear about stabilization of the disease after the second dose of Lu-177! My son is currently only on monthly Lanreotide shots, feeling great, and the last two scans showed stable disease. He is being scanned every 3 months and the next scan is in October. If he has disease progression, we will go to University of Iowa for a PRRT consult with Dr. Sue O’Dorisio. I wanted to be sure that you reached out to correct doctor at Iowa. There is a husband and wife team who both specialize in NETs ……Dr. Sue O’Dorisio and Dr. Thomas O’Dorisio. Your note said you reached out to Dr. Thomas.
On another note, I wanted to mention that we’ve done a lot of research on diet and cancer and have switched to eating as much organic, plant-based foods as possible (no meat, but occasionally sneak in a little cheese 🙂 ), along with a few vitamin supplements, and I can’t help but think that might be contributing to my son feeling so well! Just wanted to share. Take Care.
I would love to hear how the Lu-177 works for your daughter. We are thinking of looking into that for our son. University of Iowa is the only place that offers it in the U.S. for people under 18 years of age. Deb Foley, Columbus, Ohio