Immunotherapy Experience & Advice

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nmorgen
Posts: 82
Joined: Sat Nov 05, 2022 10:31 am

Re: Immunotherapy Experience & Advice

Postby nmorgen » Thu Mar 09, 2023 10:30 pm

He didn’t have any test before. He is still having cramps and diarrhea today.

As far as labs today his hemoglobin was the highest it has been so far 12.1, which might explain why he is feeling better. All of the liver and thyroid was normal. The bad was his neutrophil was high and the lymphocytes were low. They still haven’t posted his CEA, so we have no idea.

The dr had the preliminary scan report and the liver hadn’t changed enough to be statistically significant. They didn’t really mention the colon, which I’m not sure they can even see on ct scans other than thickening of the sigmoid. They are setting him up for ctdna testing. The plan is to continue with Opdivo alone for 4 treatments and to rescan. I’m hoping they will use mri for the next scan.

I’m still being hopeful that the treatment will work.
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, Lynch Syndrome
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
2/13/23 Yervoy& Opdivo CEA 3.4
3/7/23 ct scans no change
3/9/23 Opdivo CEA 3.4
4/4/23 Opdivo CEA 2.3
6/1/23 Opdivo CEA 2.6

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CRguy
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Joined: Sun Feb 10, 2008 6:00 pm

Re: Immunotherapy Experience & Advice

Postby CRguy » Thu Mar 09, 2023 11:49 pm

question ? :
was it intravenous iodinated CT contrast OR oral iodinated CT contrast ?

addendum :
Yes, they should do kidney functions test assessment : creatinine / creatinine clearance with eGFR

suggestion : IF they are going to do an MRI he should have the kidney function tested,
as the MRI contrast is also potentially a risk factor for the kidneys due to gadolinium content.

Best wishes for you and hubby
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Jacques
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Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Immunotherapy Experience & Advice

Postby Jacques » Fri Mar 10, 2023 12:47 am

CRguy wrote:question ? :
was it intravenous iodinated CT contrast OR oral iodinated CT contrast ?

addendum :
Yes, they should do kidney functions test assessment : creatinine / creatinine clearance with eGFR

suggestion : IF they are going to do an MRI he should have the kidney function tested,
as the MRI contrast is also potentially a risk factor for the kidneys due to gadolinium content.

Best wishes for you and hubby
CRguy

As usual, some very relevant comments/questions from CRguy.

Also, if your husband is seriously looking into an MRI, then there is a special kind of contrast-enabled MRI designed to detect details in liver mets:

... Also, please note that there is a special kind of MRI that does angiogram-like images showing blood flow patterns in the liver. Is this the kind of MRI you are considering? https://radiopaedia.org/articles/liver-protocol-mri

nmorgen
Posts: 82
Joined: Sat Nov 05, 2022 10:31 am

Re: Immunotherapy Experience & Advice

Postby nmorgen » Fri Mar 10, 2023 2:35 am

Thank you for the well wishes.

It was iohexol intravenous.

When they did the mri they used gadoteridol and it didn’t bother him. They also put a bunch of gel up his bum for the mri. We are just hoping they do the same type of mri that they did in Nov as it showed the tumors in more depth and they were able to get better measurements.
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, Lynch Syndrome
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
2/13/23 Yervoy& Opdivo CEA 3.4
3/7/23 ct scans no change
3/9/23 Opdivo CEA 3.4
4/4/23 Opdivo CEA 2.3
6/1/23 Opdivo CEA 2.6

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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Immunotherapy Experience & Advice

Postby Jacques » Fri Mar 10, 2023 5:23 am

nmorgen wrote:Thank you for the well wishes.

It was iohexol intravenous...

In my hospital, they use ionitridol for IV contrast. Here is the side effects profile for that particular contrast agent:

https://www.drugs.com/uk/xenetix-350-350-mgi-ml-solution-for-injection-leaflet.html

Here is the side effects profile for the iohexol agent that your husband had:

https://www.drugs.com/sfx/iohexol-side-effects.html
Last edited by Jacques on Fri May 05, 2023 6:43 am, edited 1 time in total.

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Jacques
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Location: Occitanie

Re: Immunotherapy Experience & Advice

Postby Jacques » Sat Mar 11, 2023 7:16 am

Best wishes for good outcomes on the upcoming scans.

Take care ...

nmorgen
Posts: 82
Joined: Sat Nov 05, 2022 10:31 am

Re: Immunotherapy Experience & Advice

Postby nmorgen » Sat Apr 08, 2023 8:31 am

Thank you. I think his next scans will be in May. I’m not sure what they are going to use. His CEA has dropped again, and
I’m very thankful.
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, Lynch Syndrome
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
2/13/23 Yervoy& Opdivo CEA 3.4
3/7/23 ct scans no change
3/9/23 Opdivo CEA 3.4
4/4/23 Opdivo CEA 2.3
6/1/23 Opdivo CEA 2.6

nmorgen
Posts: 82
Joined: Sat Nov 05, 2022 10:31 am

Re: Immunotherapy Experience & Advice

Postby nmorgen » Thu May 04, 2023 11:37 pm

My husband gets his ct scan in two weeks. They don’t want to use another contrast, just give him a lot of steroids. I know steroids are not good to take with immunotherapies, so I’m not sure what I should do or say. This is really pissing me off.

Today we finally got the results from his genetic testing and he does have Lynch, so now my boys need to be tested.
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, Lynch Syndrome
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
2/13/23 Yervoy& Opdivo CEA 3.4
3/7/23 ct scans no change
3/9/23 Opdivo CEA 3.4
4/4/23 Opdivo CEA 2.3
6/1/23 Opdivo CEA 2.6

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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

New Lynch Syndrome diagnosis

Postby Jacques » Fri May 05, 2023 1:11 am

nmorgen wrote:My husband gets his ct scan in two weeks. They don’t want to use another contrast, just give him a lot of steroids. I know steroids are not good to take with immunotherapies, so I’m not sure what I should do or say. This is really pissing me off.

Today we finally got the results from his genetic testing and he does have Lynch, so now my boys need to be tested.

Thank you for the update, but I'm sorry to hear the news about the new Lynch Syndrome diagnosis. This makes the situation a bit more difficult for you and your family.

However, there are lots of resources available on the Internet for Lynch Syndrome support. Or perhaps you can find a support group project locally or in Atlanta on DH's next visit there.

Lynch Syndrome support


Also, this proclamation from the Governor might be of interest to you:
https://governor.alabama.gov/wp-content ... ss-Day.pdf

If you can think of ways that people here on this Forum might be of help to you and your family, please let us know.

=====
When you eventually get the results from the May 18th / May 19th scan, you could look at the post below for more details on CT scan interpretation for Stage IV with liver mets:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=66462#p514916

DH may also want to look at Figure 1 in the post above to get an idea of what the post-Opdivo options will be for dealing with liver mets.

This is very important because if Opdivo immunotherapy does not remove the liver mets completely, then the plan would be to remove them (if possible) by surgery/ablation procedures. But to do this the CT scans would have to be examined in much greater detail so that the liver surgeons/radiologists have the information at hand to determine what procedures will be feasible after Opdivo has run its course.

The examination of liver CT scans in great detail would likely be done according to the RECIST v.1.1 protocol, which takes more time and would have to be requested explicitly by the oncologist who requisitions the upcoming scans. If RECIST is not requested specifically, then the upcoming CT scan reports will probably be ordinary, generic scan reports.

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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Immunotherapy Experience & Advice

Postby Jacques » Wed May 17, 2023 9:57 am

nmorgen wrote:My husband gets his ct scan in two weeks. They don’t want to use another contrast, just give him a lot of steroids. I know steroids are not good to take with immunotherapies, so I’m not sure what I should do or say. This is really pissing me off.

How is your husband doing this week? Is he getting ready for this week's scans? I imagine it must be rather difficult for him with all of these new changes in diagnosis occurring in the past few weeks.

Tell him we're thinking of him, and that we're hoping for the best for his scan results this week.

Take care ...

nmorgen
Posts: 82
Joined: Sat Nov 05, 2022 10:31 am

Re: Immunotherapy Experience & Advice

Postby nmorgen » Wed May 17, 2023 10:15 pm

Thank you. He had his scans today. He pushed last week for an mri and they agreed to it. The results just came through the portal and there is a decrease in the size of all the tumors. The liver wasn’t much of a decrease, but the 2 colon tumors are pretty significant size decreases.

I am so thankful for this treatment and I really appreciate the people on this forum. Thanks to this forum we pushed for the immunotherapy. 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, Lynch Syndrome
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
2/13/23 Yervoy& Opdivo CEA 3.4
3/7/23 ct scans no change
3/9/23 Opdivo CEA 3.4
4/4/23 Opdivo CEA 2.3
6/1/23 Opdivo CEA 2.6

nmorgen
Posts: 82
Joined: Sat Nov 05, 2022 10:31 am

Re: Immunotherapy Experience & Advice

Postby nmorgen » Thu May 18, 2023 5:45 pm

The dr thinks everything is working well, and my husband will continue the immunotherapy. The colon tumors have really shrunk. The largest was 8.3 cm and is now 1.4cm. The donut shaped colon tumor was 7cm and it is now 3.2 cm. The liver tumors haven’t decreased that much. 9.8 x 7.0 cm metastasis in the liver dome 10.3 x 6.7 cm previously.

7.3 x 6.1 cm metastasis central liver towards the dome 7.8 x 6.5 cm previously.

They also did a ct w/out contrast, and I just saw the results in the portal. It says that the liver tumors show calcification. I haven’t seen that from any of the other ct scans. Does anyone have any idea what that means?
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, Lynch Syndrome
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
2/13/23 Yervoy& Opdivo CEA 3.4
3/7/23 ct scans no change
3/9/23 Opdivo CEA 3.4
4/4/23 Opdivo CEA 2.3
6/1/23 Opdivo CEA 2.6


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