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nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

New to the forum

Postby nmorgen » Fri Dec 02, 2022 12:07 pm

Hi everyone,

I’ve been reading through the forum for the past week, and decided to introduce myself. My DH had a colonoscopy on Oct 27th and the gastro found 2 tumors in his sigmoid colon. He told my husband that he was sure it was cancer and scheduled a ct. We got the results Nov1 that there were 2 tumors in his liver. Our first oncology appt was with a surgeon Nov14 and she didn’t want to proceed with any surgeries until after chemo, and installed his port the next day . We had the appt with the oncology medicine dr and he set up my husbands chemo folfirinox to start Dec 1. My husband had a web call with the pa on Nov30 to discuss the pump, and we were surprised that the dr had decided against chemo and my husband was switched to Yervoy and Opdivo. He had his first infusion yesterday and other than being tired hasn’t had any side effects so far.

I feel like I have been on an emotional roller coaster. I have only been upset in front of my husband once. I know he does not want to even talk about his cancer. He wants everything in life to go on like before. I completely understand this, but when he isn’t around I find myself stressed and sad. I think that is why I found my way here. Some of your stories have given me hope and others have broken my heart, but I think all of them are helping me.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

User avatar
GrouseMan
Posts: 879
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: New to the forum

Postby GrouseMan » Fri Dec 02, 2022 12:49 pm

Looks like your DH is on the leading edge. The change in treatment from FOLFIRNOX to Yervoy+Opdivo may be due to the results of a biopsy indicating that the tumor was MSI-H or d-MMR which is a good thing when it comes to using Immunotherapy. Not very long ago this treatment would not have been available for colon cancer. The normal FOLFOX treatment would have been the usual initial course of action. I have a friend with Metastatic Melanoma that is on this treatment. His skin cancer metastasized to his lungs. Fatigue is his worse side effect I believe.

It's interesting to see an Oncologist using this for colon cancer as an initial treatment! I don't recall anyone else here starting with this immunotherapy right at the starting gate. You may find this paper interesting:

https://pubmed.ncbi.nlm.nih.gov/29355075/

Good Luck!

Grouse Man.
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

roadrunner
Posts: 347
Joined: Sun Jan 12, 2020 8:46 pm

Re: New to the forum

Postby roadrunner » Fri Dec 02, 2022 1:23 pm

I agree with Grouseman. It is very important for you and/or your husband to understand whether he is MSI-H or d-MMR right now, and what the full implications of that are for his course of his treatment and prognosis.

I understand the stress and sadness. The cancer diagnosis alone is hard, and Stage IV is harder. That said, things will settle and you’ll find your feet again. And if your husband is MSI-H or d-MMR, that’s a cause for celebration. It opens up a whole range of very effective, very tolerable treatment options. And it’s uncommon. Only up to 15% of colorectal patients are in this group. He may even be able to swing his “nothin’ to see here” approach in the end—perhaps with you in the background, smiling : ) But as always with CRC, more options require more engagement IMO. His oncology team should be able to give you a full initial picture of his status, what it means, the options available, and why they are going the way they are. You can use that info as a jumping-off point to understand his situation and likely future better. As you can probably tell, I’m a big advocate of active engagement and more information, not less. Google has always been my friend. Some differ on that, which I respect. But if you do seek information on your own to make things easier/empower yourself, find out his MSI vs. MSS status first. Two different worlds.

Also, if you want to get the (significant) benefit of the collective experience and knowledge of the denizens of this forum, take the time to do a signature with your husband’s information (look at others for info to include). It’s a great forum and resource. Good luck!
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: New to the forum

Postby nmorgen » Fri Dec 02, 2022 7:37 pm

Thank you for the replies. My husband is MSI-H. They are still doing the other genomic tests. I have no idea when we will get any of the results. The medical oncologist said that he chose these 2 immunotherapies because my husband told him that he wanted to be cured and he thought this looked like the best option. I am praying that it is.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

User avatar
Jacques
Posts: 646
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: New to the forum

Postby Jacques » Fri Dec 02, 2022 11:30 pm

Hello nmorgen -

Welcome to the forum, and thank you for creating a signature and adding your husband's MSI status.

I think the next step would be to deal with the primary tumors' KRAS/NRAS/BRAF mutation status (genomic testing). Normally, the KRAS/NRAS/BRAF panel is done soon after Stage IV diagnosis by sending a biopsy tissue sample out to a special lab. This is often done separately from the MSI-status testing and may take longer for the results to come back.

Have the doctors requested this test panel yet, and have the results come back? This information can be very useful for future treatment planning. You can get a general overview of the treatment options available by looking at the list of approved CRC drugs shown in the post below:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65682&p=509935&hilit=yervoy+opdivo#p509935

You can get more information about genomic testing from this post:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62768&p=494630#p494630
.
.

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: New to the forum

Postby nmorgen » Sun Dec 04, 2022 2:33 pm

I was also wondering if anyone knows if there is another forum or group that deals with people on immunotherapies? Even if they aren’t necessarily crc. I have had a difficult time finding anything. I have tried joining other cancer groups on FB, but they don’t seem to be very informed about cancer treatments in general and especially immunotherapy. I just feel a little in the dark. I am praying that this therapy works for my husband, and if it does I know it will be a long term thing. I guess I am hoping that there will be others that I can talk to and get advice from.
Thanks
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

Rock_Robster
Posts: 743
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: New to the forum

Postby Rock_Robster » Sun Dec 04, 2022 8:50 pm

nmorgen wrote:I was also wondering if anyone knows if there is another forum or group that deals with people on immunotherapies? Even if they aren’t necessarily crc. I have had a difficult time finding anything. I have tried joining other cancer groups on FB, but they don’t seem to be very informed about cancer treatments in general and especially immunotherapy. I just feel a little in the dark. I am praying that this therapy works for my husband, and if it does I know it will be a long term thing. I guess I am hoping that there will be others that I can talk to and get advice from.
Thanks


I believe Colon Town has an immunotherapy “neighbourhood” called Immunoasis you could check out.
40M Australia
2018 Dx RC 12cm high
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA: Nov-18: 14 > 2
Jun-22: 5
Sep: 10
Nov: 19
Dec/Jan-23: 17-19
11/18 FOLFOX
3/19 Liver resect
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resect
NED
11/21 Liver met, PALN, sub-cm lung mets
3-4/22 Lymphadenectomy, liver SBRT
9/22 Liver met, PALN
10/22 PALN SBRT
11/22 Liver mets, nodes, peri nodules. Xeloda+Avastin
1/23 Liver/lungs stable. Lymph/peri undetectable

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: New to the forum

Postby nmorgen » Sun Dec 04, 2022 11:57 pm

Thank you RockRobster. I am in the process of trying to join that fb group. I guess it may take another day or two. I wish there were more people using immmunotherapies on this board, as I like this format better than fb. I really do appreciate all of the information and personal stories found on this board. I have definitely learned a great deal.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

User avatar
Jacques
Posts: 646
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: New to the forum

Postby Jacques » Mon Dec 05, 2022 1:30 am

nmorgen wrote:...I guess I am hoping that there will be others that I can talk to and get advice from.

Thanks

nmorgen -

I think I understand your husband's situation now, at least in part.

If you're interested, I could share some thoughts, but these would only be thoughts and would not qualify as "advice", since I am not in a position to give any medical advice on immunotherapies as I have had no personal experience in that area, and I have never talked to my oncologist about immunotherapies either, since he said I would never need that type of treatment.

In addition, I would have to declare some of my biases, since I am not totally in agreement with the standard of care (SOC) framework being used there in the U.S.

If, in spite of all this, you are still interested in what I have to say, then let me know. However, whatever I say would have to be taken with a grain of salt since all of my thoughts are based only on what I have read here on this forum and on the Internet in the past 8 years or so, and not on personal experience with immunotherapy.

Take care ...

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: New to the forum

Postby nmorgen » Mon Dec 05, 2022 6:39 am

Hi Jacques,

I would be interested in your insights. I believe that the more information you have the better the decision making. It could also help me find new avenues to research. This is all so new to me, but this forum has really helped learn quite a lot so far, but I know that I still have a long way to go in my knowledge.
Thank you.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

User avatar
Jacques
Posts: 646
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: New to the forum

Postby Jacques » Mon Dec 05, 2022 8:46 am

Hi nmorgen -

Here are some links to the primary documents of interest for your DH's immunotherapy regimen, followed by a few of my comments:

  1. 2014 : Start of first Phase 2 clinical trial of Opdivo+Yervoy for mCRC

    "Checkmate-142", Phase 2 clinical trial, 6 cohorts (treatment arms), 385 participants, 33 locations in 8 countries,
    Start Date: 2014
    1st Interim data analysis for Opdivo+Yervoy combo: Date 2017 (analysis restricted to "failed prior-chemo" cohort only: 119 patients)
    2nd Interim data analysis Opdivo+Yervoy combo: Date 2021 (analysis restricted to "no prior chemo" cohort only: 45 patients)
    Estimated completion date: 2023/2024
    https://clinicaltrials.gov/ct2/show/NCT02060188
    .
  2. 2017: Interim analysis restricted to the "failed prior-chemo" cohort of "Checkmate-142", N=119 patients
    These 119 patients had received prior treatment(s) that had failed, (e.g., FOLFOX, XELOX, FOLFIRI, FOLFOXIRI, etc.)

    .
  3. 2018: Date of FDA accelerated approval for only a restricted subset of mCRC patients, i.e., only those patients who had received prior chemo treatments that had failed.

    FDA accelerated  approval (i.e., tentative approval based on preliminary analysis of Phase 2 trial NCT02060188 above that included only the cohort that had had prior chemo, but where final approval will need to be based on analysis of the Phase 3 clinical trial NCT04008030 below after study completion sometime in 2025/2026)
    Combination of Immunotherapy Drugs Approved for Metastatic Colorectal Cancer
    https://www.cancer.gov/news-events/cancer-currents-blog/2018/fda-ipilimumab-nivolumab-colorectal-dna-repair

  4. 2019: Start of the definitive Phase 3 clinical trial of Opdivo+Yervoy for mCRC

    "Checkmate 8HW", Phase 3 clinical trial, Estimated 831 participants, 171 locations in 24 countries.
    Interim data analysis date: Not yet determined
    Estimated completion  date: 2025/2026
    https://www.clinicaltrials.gov/ct2/show/NCT04008030
    2026 (or later) Final Phase 3 data analysis to determine whether Opdivo+Yervoy is in fact approvable for mCRC general use.
    .
  5. 2021: Interim data analysis restricted to the "no prior chemo" cohort of "Checkmate-142", N=45 patients

    .
  6. 2021: NCCN Guidelines for Colorectal Cancer, version 2.2021
    https://pubmed.ncbi.nlm.nih.gov/33724754/ (brief overview only)
    .
  7. 2022: Opdivo (nivolumab) package insert
    https://www.drugs.com/pro/opdivo.html
    .
  8. 2022: Yervoy (ipilimumab) package insert
    https://www.drugs.com/pro/yervoy.html
    .
  9. 2021: Case study: Complete Response (CR) after 7 months of Opdivo+Yervoy therapy followed by surgery with curative intent
    https://news.usc.edu/trojan-family/turning-the-immune-system-against-colon-cancer

Overview
Your DH was originally scheduled to start treatment for metastatic CRC with a standard first-line regimen of FOLFIRINOX. However, the decision was then made to change this to a first-line regimen of Opdivo+Yervoy (low dose) -- which is now underway in the first month of execution. If all goes well this regimen is expected to continue until sufficient response has been observed so as to allow R0 resections of the primary tumors as well as the liver tumors with curative intent. After all surgeries have been completed, the patient will then proceed to the 5-year surveillance period.
.
Chronology
  • In 2014, a Phase 2 trial was started to test safety and efficacy for 6 cohorts that involve Opdivo (nivolumab). One of the six cohorts was a treatment arm consisting only of patients who had never had any chemo treatments before. Another of the six cohorts was a treatment arm consisting only of those patients who started out with first-line standard chemo but had failed to achieve any treatment effect.
  • In 2017, an interim analysis was performed on the "failed prior chemo" cohorts and it showed significant positive results with low rate of side effects.
  • In 2018, the FDA granted an accelerated approval for a first-line regimen of Opdivo+Yervoy (low dose) for the patients who had failed prior chemo.
  • In 2019, a large Phase 3 clinical trial was launched to obtain data needed for final approval of several Opdivo treatment regimens that had shown promise in the earlier Phase 2 trials, including the regimen for first-line use of Opdivo+Yervoy (low dose) for patients who had never had any prior chemo.
  • In 2021, an interim data analysis was performed for the "no prior chemo" cohort, and it showed significant positive results with low rates of side effects -- but the sample size of this cohort was very small.
  • In 2021, the NCCN decided to allow "no prior chemo" metastatic CRC patients to access the Opdivo+Yervoy (low dose) regimen as a first-line regimen. The 2021 version of NCCN Guideline for Colon Cancer (Version 2.2021) shows the following immunotherapies as available first-line treatments for dMMR/MSI-H Stage IV CRC tumors considered resectable as R0 resections.

      "Consider ( [Nivolumab + ipilimumab] or pembrolizumab [preferred]) (dMMR/MSI-H only) ** followed by synchronous or staged colectomy and resection of metastatic disease
        ** Data are limited and the risk of early progression may be higher than with chemotherapy. André T., et al., N. Engl. J. Med. 2020; 383: 2207-2218.
      Reference: COL-5, page 12 of 198, NCCN Colon Cancer Guidelines, Version 2.2021
  • It is to be noted that this Opdivo+Yervoy (low dose) regimen is intended primarily for use as a preparation for eventual R0 resections with curative intent. This immunotherapy regimen itself is not intended as a curative therapy on its own; it must be followed by the surgeries in order for the overall treatment to be considered curative.
Last edited by Jacques on Fri Dec 09, 2022 11:42 am, edited 1 time in total.

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GrouseMan
Posts: 879
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: New to the forum

Postby GrouseMan » Mon Dec 05, 2022 12:05 pm

nmorgen wrote:I was also wondering if anyone knows if there is another forum or group that deals with people on immunotherapies? Even if they aren’t necessarily crc. I have had a difficult time finding anything. I have tried joining other cancer groups on FB, but they don’t seem to be very informed about cancer treatments in general and especially immunotherapy. I just feel a little in the dark. I am praying that this therapy works for my husband, and if it does I know it will be a long term thing. I guess I am hoping that there will be others that I can talk to and get advice from.
Thanks


As you can see from Jacque's post this is fairly new stuff, and generally not used routinely yet in CRC. It shown quite a bit of promise, however particularly in other cancers besides CRC, so it has a good shot. The Standard of treatment that Jacques refers to is FOLFOX, FolFiri and sometimes Folfirinox, augmented sometimes with or Avastin or an EGFR inhibitor. As a former Anticancer drug discovery chemist, I know it takes a LONG time before these therapies make it to standard practice. We are really just starting the age of personalized medicine, tailoring treatment to the individual rather than type of cancer. The fact of the matter is every cancer even within a particular type like CRC is unique to the patient, having characteristics unique to the individual. Mets often have a different make up of mutations than the primary for instance. It wasn't all that long ago that even the FOLFOX therapy was debated as to how many cycles 6, 8, or 10 one should use and its frequency every two or every three weeks, and if 5-FU should be given in a bolus dose in addition to the pump. I am still surprised that the use of Avastin in still not standardized as part of the standard therapy as by now there has got to be ample evidence of it being beneficial in combination with FOLFOX and FOLFIRI.

I think you will find the forum here has really good information as we tend to share and critic what we learn. I and others including DK37's prior to his passing try to dig out as much of the latest research we can find. DK was another cancer researcher and member, that was planning his own immunotherapy trial before he became too ill to initiate his trial. I was a care giver to my wife, and we have had other members that had researching skill such as Miai ,she wasn't a scientist but an editor, I believe, that was really great at finding new research papers - I miss her as she often brought attention to us all about new research that we could further look into.

So there is a lot of useful experience floating around in these forums from many that are gone but who provided wisdom to share. Despite my wife's passing - I still come here and contribute what I can.

Regards,

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: New to the forum

Postby nmorgen » Tue Dec 06, 2022 4:04 am

GrouseMan,

I agree that there is a lot of very useful information in this forum. As I have been reading I was actually shocked at how new some of the treatments for crc are. All of the info on this forum is why I like it so much better than the FB groups. People here seem to be more technical and looking for ways to treat their cancer. I guess I’m not really looking for emotional support as much as understanding what treatments are out there, and info to help make decisions. I’m sure at some point I might want emotional support, but right now I just need to figure out what we are dealing with.

Honestly, I’ve never really dealt with cancer. The only experience I’ve ever had was with my cousin who had inflammatory breast cancer and died so fast. When I researched that it just seemed hopeless. The other was a friend’s child that had glioblastoma in her brain stem. It was also a hopeless diagnosis.

I have dysautonomia, and believe me I went everywhere to figure out what was wrong with me. I was told several times that it was all in my head or I needed a psychiatrist. They were wrong and thankfully I didn’t listen to them. So I like to do research and make informed decisions. I know I don’t have a full picture of this cancer. We don’t even know what mutations my husband might have or if he has lynch syndrome, but the msi-h at least gave things to look into.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: New to the forum

Postby nmorgen » Tue Dec 06, 2022 2:03 pm

I am curious if anyone else thinks it’s weird that my husband has 2 tumors in his sigmoid colon. I can’t seem to find anyone else mentioning anything about 2 tumors in the colon. If anyone has come across something similar in their research I would be very interested. Thank you.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9


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