This is my first post to this forum. I am reaching out for any advice anyone may have on navigating the clinical trial process. My brother is 26 and a Stage IV cancer patient. He was diagnosed last August with a mucinous adenocarcinoma with "signet ring cell features" in the ascending colon, which they removed. It had penetrated the colon wall at the time they found it, and they determined that 19 of the 50 lymph nodes they removed were involved, but at the time believed they had gotten most of it except for possibly one lymph node. He went on one round of FOLFOX and four rounds of CAPOX, then a scan found a few peritoneal lesions on the liver capsule, so he switched to FOLFIRI-BEV in January. He's been on FOLFIRI-BEV for two months/four rounds, and just recently had another scan showing spread to the gallbladder fascia, omentum, bilateral colon gutters, and the superior border of the bladder. CEA jumped from about 100 to over 900 in that time. He has been going to MD Anderson for scans and for the main recommendation on his course of treatment; we also went for a second opinion at MSKCC but they largely agreed with MDA. Both said that he is only a candidate for CRS/HIPEC if his tumors are stable or shrink.
His MDA team thinks the next step should be adding back oxaliplatin just in case FOLFIRINOX-BEV is more effective than irinotecan or oxaliplatin on their own, but they have also recommended beginning to reach out to institutes about clinical trials. His oncologist has found a "compelling" trial at MDA focusing on pathway inhibitors for a fusion gene in his tumor (PTPRK-RSPO3), and they've scheduled a consultation for the trial in about a week. To my understanding, he doesn't have the other mutations (BRAF, KRAS) and he is MSS.
I am hoping for any advice you may have on what we should be doing now. His MDA team recommended that we reach out to other institutes too, so we are also in touch with NCI about some potential trials, and they've suggested a few. Do you think we should apply to multiple? How do we choose which ones? Are we bound by the first one we get into? I only have a nominal understanding of the clinical trial process but understand that the process is a bit unpredictable and it may be difficult to get in / there may be waitlists, so ultimately we may not have a choice, but we just feel a bit at sea with all that is out there.
My mother is also very much into alternative remedies and has been pushing my brother to try mistletoe extract for some time, which he has not yet done because the homeopathic folks at MSKCC advised that it could interfere with his chemo. He may try it now, but not until we figure out whether it will affect his eligibility for any clinical trials. She has also recently floated Vitamin C treatments. It would be great to hear about anyone's experiences with mistletoe or Vitamin C.
Appreciate any insight or advice anyone may have, and thank you so much in advance.
Sister to age 26 M Stage 4 (25 at dx)
08/2020: Hemicolectomy to remove SRC/mucinous adenocarcinoma in right side, Stage 3C (T4a, N2b, M0)
01/2021: Peri mets on liver capsule, CEA 100, FOLFIRI-BEV
03/2021: "Significant progression" of mets throughout peritoneum, CEA 900+, FOLFIRINOX-BEV
04/2021: Immunotherapy trial targeting WNT pathway/RSPO3 fusion gene. Scan showed relatively stable since 03/2021, ascites, CEA 400
05/2021: At peace; missing him always