Immunotherapy Experience & Advice

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

Re: Immunotherapy Experience & Advice

Postby nmorgen » Mon Dec 26, 2022 2:28 am

Hi Jacques,

His 3rd and 4th treatments are on Jan 12 and Feb 2. He will have scans and see his oncologist on Feb2. I assume we will find out then if it is working and how we will proceed.

We still haven’t gotten his genomic info for the tumors yet. I’ll be glad because I feel like we are in the dark. We also don’t know about the lynch syndrome either.

My husband hasn’t had any diarrhea or nausea. He hasn’t done anything special for dehydration. Today he felt better and went to my parents for Christmas. When we got home he got on his computer to play. Hopefully the exhaustion is over for now. He does say that he can feel the tumors. He doesn’t say it hurts, but that he could feel something going on. Hopefully that is a good thing.

Thank you for responding. I appreciate it.
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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Jacques
Posts: 646
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Immunotherapy Experience & Advice

Postby Jacques » Wed Dec 28, 2022 3:10 pm

nmorgen wrote: ... His 3rd and 4th treatments are on Jan 12 and Feb 2. He will have scans and see his oncologist on Feb2. I assume we will find out then if it is working and how we will proceed. ...

Hi nmorgen -
If your DH's Opdivo+Yervoy treatment program will be evaluated on February 2, then there's just a little over a month left now before that critical evaluation will take place.

Evaluations of that type (on solid tumors) are usually done systematically according to the standardized RECIST 1.1 evaluation criteria, where there are 4 possible categories of response:
  • CR = Complete Response
  • PR = Partial Response
  • SD = Stable Disease
  • PD = Progressive Disease
Since this evaluation will determine what the treatment plan will be from March onward, I think that it would be a good idea if your DH could review the RECIST 1.1 criteria thoroughly so that he can understand what the doctors are looking at when they are deciding on future treatment options.

Also, since surgical removal of the two sigmoid colon primary tumors as well as surgical removal or ablation of the remnants of the two liver tumors may eventually be discussed, I think it would be a good idea for DH to get up to speed on the resectability requirements for liver mets, and on the different kinds of surgical procedures that might be brought under discussion -- and this could be a rather complicated issue because of the two primary tumors and the question of the best surgical procedure to handle that. There are several options that need to be evaluated and discussed, and DH will need an experienced colorectal surgeon as well as an experienced hepato-biliary liver surgeon on his team to discuss what can be done, when, and in what order.

P.S. And there are some other issues that probably should be discussed vis-a-vis DH's 3rd and 4th peripheral IV infusions, namely whether the infusions should alternate between different forearms each time so as to allow the punctured veins more time to recover from the trauma of infusion.

And how about DH's episodes of heavy perspiration and night sweats? Is that still a problem? If so, the sheets and pillowcases should probably be changed more often in order to avoid the infestation of bacteria, fungi, dust mites, etc., that just love moist bedding.

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

Re: Immunotherapy Experience & Advice

Postby nmorgen » Fri Dec 30, 2022 2:14 am

Hi Jacques,

You have brought up very good points. I was also worried about continuously using the same vein for treatment. I’ve had issues with tat myself. I’ll definitely remind him to ask them to rotate it.

As far as surgery, the surgeon was actually the first dr he saw. She said that everything would be a lot easier if they could shrink them down. Three of the tumors show some mucinous cells so the tumors lit up on the mri. They do think at least 1 local lymph node is suspicious. Having the two colon masses in the colon did complicate the potential colon surgery. My husband was sent to the surgeon because they were afraid he would have a complete blockage and needed them out asap. The surgeon told us that she thought they were very slow growth and that she didn’t think he would have any problems and didn’t even need a stint. He hasn’t had any problems using the bathroom and we are hoping the masses are shrinking.

He is still having a lot of fatigue, but the feverish feeling and sweating have stopped. I told him that he probably needs the rest and not to worry about needing naps.

I’m not sure I have mentioned this here, but my husband has been experiencing little stabbing pains in the areas of his tumors. I was wondering if anyone on immunotherapy also felt anything like that. He did say that when driving to Atlanta his right side would really start hurting. He thought it was muscle pain, but since the treatments have started the pain has gone away. He was thinking that maybe the original pain was from his liver tumors. They are both quite large 8x6cm and 5x5cm.

Thanks for responding and if anyone can think of anything else we need to research or look at please let me know.
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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Jacques
Posts: 646
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Immunotherapy Experience & Advice

Postby Jacques » Fri Dec 30, 2022 5:46 am

... Thanks for responding and if anyone can think of anything else we need to research or look at please let me know...


1. Research the precise details of the Opdivo+Yervoy mCRC protocol that DH is on. The details will change starting on the 5th infusion, and DH needs to know in advance what his dosing choices will be starting from that point onward -- assuming that he will be allowed to continue with immunotherapy. You can get the information on the dosing schedule options on page 18 if this document: https://www.opdivo.com/assets/commercial/us/opdivodtc/en/pdf/crc/CRC%20Digital%20Brochure.pdf

2. Research the precise surgery type that the CRC surgeon is planning to do for the 2 primary tumors (e.g., simple colectomy? left hemi-colectomy? with simultaneous re-join (anastomosis), or with delayed re-join (anastomosis) requiring another surgery some weeks later; with or without a temporary ileostomy (right-side of abdomen)? with or without a temporary colostomy (Hartmann's procedure with a temporary colostomy placed on the left-side of abdomen)? an open surgery vs. laparascopic surgery vs. robotic surgery vs. hybrid surgery? All of these things need to be discussed beforehand rather than just leaving it up to the surgeon to decide. This is because the surgeon might just decide to do the type of surgery that is easiest or most profitable to do rather than the type that is most beneficial for the patient over the long term. (There are several threads on this forum discussing this type of dilemma.)

3. Research the precise location of the lower of the two primary tumors. If the lower tumor is too close to the recto-sigmoid hairpin-curve junction, then the recto-sigmoid junction itself might need to be removed, too, which would convert the surgery into more like an upper rectal surgery -- which would complicate things even further.

4. Research the fall-back options to consider if/when the Opdivo+Yervoy regimen stops responding.

5. Find out why DH doesn't yet have results for the simple KRAS/NRAS/BRAF mutation test. This test is needed in order to determine which regimens are available as second-line treatment options whenever DH's first-line Opdivo+Yervoy regimen fails.

6. Research the qualifications of the doctors on DH's team. Research the ratings of the hospital(s) where DH is being treated now, and where he will be having his surgeries done.

7. Do some research on the "Medically Underserved Areas" in the region.
This map shows the extent of Medically Underserved Areas in the region. The areas that are colored "pink" are considered medically underserved areas. In contrast, areas that are all "white" are thought to have adequate medical services.
What this all means is that if your hospitals and doctors are in the pink counties then there are likely to be some shortages of highly experienced medical staff and shortages of new, state-of-the art equipment and facilities important for comprehensive cancer care. In that case, better medical care for serious illnesses like cancer could more likely be found in the white areas -- in other words, in one or more of the big metropolitan areas in the region.

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

Re: Immunotherapy Experience & Advice

Postby nmorgen » Sun Jan 01, 2023 12:16 am

Thank you for the info. I’m not really sure when we will be looking at surgery. The surgeon originally wanted the tumors shrunk with chemo because she wanted to do robotic surgery on the colon as she thought the recovery would be a lot easier. Now that we are doing immunotherapy that will change things. The immunotherapy could get rid of the tumors completely without any surgery. so right now surgery has been kind of pushed back in my mind and everything would have to be completely reevaluated at this point.

I’m not sure how to look up the physicians and surgeon rating. Where would you suggest I look? He is currently going to the cancer center at Emory in Atlanta.
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: Immunotherapy Experience & Advice

Postby nmorgen » Thu Jan 12, 2023 1:56 am

We finally got the caris report on my husbands tumors, and it is a lot. There are 36 different genes listed on the report. His TMB is high with 38 mutations. I can’t find any information on his KRAS mutation G13V, except that only .06% have it. The other two main mutations that they have listed on the first page, ERBB2(Her2) and BRCA2 seem to have a lot more information related to breast cancer, so I’m not sure how relevant any of it is to the crc. It does recommend him being tested for Lynch syndrome and a test to see if he is a BRCA2 carrier. It listed 2 MI GPSai mutations that they could not pinpoint to any known tumor types.

I feel a little overwhelmed. I thought I was getting a handle on some of this cancer stuff, and now I feel underwater again.
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: 745
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Immunotherapy Experience & Advice

Postby Rock_Robster » Thu Jan 12, 2023 9:12 am

It’s a lot to take in, but overall this could be a quite positive result. A high TMB (along with MSI-H) means the PD-1 checkpoint inhibitors he’s on are more likely to work well, and I believe HER2 may be a targetable mutation in CRC now too (at least in trials, if not already standard of care).

Sounds like BRCA testing would be worthwhile now, especially for family members’ risk profiles. BRCA is typically associated with breast cancer and melanoma, I believe. Lynch marker testing likely would have been done with his microsatellite stability / mismatch repair deficiency test, but good to check those results.
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: Immunotherapy Experience & Advice

Postby nmorgen » Sat Jan 14, 2023 2:52 am

Hi RockRobster,

We are hoping that the immunotherapy works as is and we don’t have to worry about all of the other mutations. They hopefully have ordered the Lynch test. We have been asking about it for a month. Caris recommended testing for BRCA2 carrier status and Lynch. The only problem with the Her2 is that he is negative/0, so no amplification. Most of the trials for colorectal want positive/3. So, I’m not sure he would qualify for any of the her2 treatments.

On the other hand he should qualify for PARP inhibitors. Though most treatments are geared toward breast and pancreas cancers the fda has approved all brca2 cancers for PARP from my understanding.
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: 745
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Immunotherapy Experience & Advice

Postby Rock_Robster » Sat Jan 14, 2023 6:10 am

No worries at all, and good luck. You could also look into complementary treatments that have PARP-inhibiting effects, eg quercetin:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5748637/
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: Immunotherapy Experience & Advice

Postby nmorgen » Sun Jan 15, 2023 1:26 pm

Hi Rock Robster,

I was looking at quercetin as a parp inhibitor from one of your posts about supplements that you were taking. I’m not 100% sure which form would be more effective though.

Thank you for the link to the article. It was very interesting. Especially the hesperitin, which I had never heard of before.
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: Immunotherapy Experience & Advice

Postby Jacques » Sun Jan 22, 2023 2:22 am

nmorgen wrote:Hi,
I was wondering if anyone would be willing to share their experiences and any advice regarding their immunotherapy journey. I would especially be interested in any concurrent treatments or added therapies. Anything to do with side effects or ways to deal with them. Are there supplements or anything that we should avoid? Or definitely be adding? Any advice or guidance would be greatly welcomed.
Thank you

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