Advice on Clinical Trials - Peritoneal Mets

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MCT2021
Posts: 6
Joined: Mon Mar 15, 2021 12:27 pm

Advice on Clinical Trials - Peritoneal Mets

Postby MCT2021 » Tue Mar 16, 2021 3:56 pm

Hello,

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)
10/2020: FOLFOX/CAPOX
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

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Green Tea
Posts: 414
Joined: Mon Oct 24, 2016 10:48 am

Re: Any advice on Clinical Trials - Peritoneal Mets ?

Postby Green Tea » Wed Mar 17, 2021 11:46 pm

MCT2021 wrote:Hello,

This is my first post to this forum. I am reaching out for any advice anyone may have on navigating the clinical trial process. ...

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...

Appreciate any insight or advice anyone may have, and thank you so much in advance.

Welcome to ColonTalk. I'm sorry to hear of your brother's difficult Signet Ring Cell (SRC) diagnosis.

To answer your concern about clinical trials, I think it would be best if you could obtain the NCT numbers for the clinical trials that NCI considers "potential". If you could post the NCT trial numbers for these potential trials, then someone here could look at the trial protocols and their inclusion/exclusion criteria and provide some comments on the trials and how to navigate the clinical trial process.

There are over 300 clinical trials open right now for Stage IV colon cancer, but only a very small number of these would be open for patients with profiles like your brother's. Thus, it would help if you have a short list of "potential" trials to start with.

Thank you.

CLINICAL TRIAL FINDER
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53238&p=507237#p507237

MCT2021
Posts: 6
Joined: Mon Mar 15, 2021 12:27 pm

Re: Advice on Clinical Trials - Peritoneal Mets

Postby MCT2021 » Fri Mar 19, 2021 9:41 pm

Thank you so much for this, and for sending the trial finder! I am asking for the NCT numbers and will circle back if I can get them. I really appreciate your insight.
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)
10/2020: FOLFOX/CAPOX
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

User avatar
Green Tea
Posts: 414
Joined: Mon Oct 24, 2016 10:48 am

Re: Advice on Clinical Trials? - Peritoneal Mets?

Postby Green Tea » Sun Mar 21, 2021 1:15 am

You're welcome!

If you want to elicit personal-experience replies for the other two concerns that you mentioned in your first post, I would suggest that you post two additional NewTopic messages with Subject lines like:

  • Anyone with experience with IV Vitamin C?
  • Anyone manage to reduce peri-met burden by chemo alone?

This is because it is easier for members to see what your main concerns are if you post them separately with customized titles for each one. Members who access the forum only once or twice a month to scan new items on the first page will be more likely to see, and respond to, your question.

Let us know when you are ready to start navigating the clinical trials process...

Beza1422
Posts: 16
Joined: Wed Apr 21, 2021 2:45 am

Re: Advice on Clinical Trials - Peritoneal Mets

Postby Beza1422 » Sat May 08, 2021 9:54 pm

MCT2021, I am so sorry to hear about your brother and sending all the support and good wishes your way! My mother is going through a similar situation right now and we are looking into clinical trials. Which one is your brother enrolled in and how is it going?
DX 2/19: Mid-rectum adenocarcinoma, moderately differentiated
KRAS G12D ( p.Gly12ASP), MSS
4/19-5/19: Neoadjuvant Xeloda and Radiation
7/19: Low anterior Resection with end colostomy
4/21: CEA 74, two hyper metabolic left supraclavicular lymph nodes confirming adenocarcinoma at biopsy, focal activity at pelvic lymph nodes and a 0.9 cm lesion in mesentary/small bowel

MCT2021
Posts: 6
Joined: Mon Mar 15, 2021 12:27 pm

Re: Advice on Clinical Trials - Peritoneal Mets

Postby MCT2021 » Mon May 31, 2021 9:50 pm

Hi Beza1422, thank you so much. My brother ended up enrolling in a trial involving hedgehog pathway inhibitors that was tailored to a particular fusion gene he had, along with Keytruda. Unfortunately, his peri mets progressed pretty significantly, and he experienced inoperable blockages shortly after the trial started. He passed away in mid-May. I'm sorry I don't have better news for you. At the time we were deciding between trials, I was also very interested in a PIPAC trial at City of Hope for peritoneal mets that I might recommend looking into: https://www.cityofhope.org/pipac

Sending thoughts and prayers to you and your mother--I am so sorry that you are going through this. It is an unimaginable ordeal.
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)
10/2020: FOLFOX/CAPOX
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


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