New stage 4 colon cancer diagnosis

[claudine]

MSS is usually open to Immunotherapy, TMB only plays a role on those with MSI

Isn't it actually the opposite? MSS = micro satellite stable = not a good candidate for immunotherapy, unless you've got a high tumor burden. So your husband would not benefit from it.
But I concur with Riki that being BRAF and KRAS wild is a good thing!

[Rikimaroo]

MSS is usually open to Immunotherapy, TMB only plays a role on those with MSI

Isn't it actually the opposite? MSS = micro satellite stable = not a good candidate for immunotherapy, unless you've got a high tumor burden. So your husband would not benefit from it.
But I concur with Riki that being BRAF and KRAS wild is a good thing!

Whoops your right, I got it backwards. MSI-H means she should be a candidate for Immunotherapy.

https://www.fda.gov/news-events/press-a ... R%20tumors.

[boxhill]

Hate to be too blunt, but having to make up his mind between different therapies should be the least of your H's worries! It is better to have choices than none. A 41-yr old with a stage IV diagnosis and 2 young kids should DEFINITELY go to a top cancer center for a second opinion, and maybe even a third. If you don't want to go as far as Texas, Boston, or New York, consider Cleveland Clinic or Mayo.

IMHO, you want to find someone who is willing to put together an aggressive course of treatment aimed at getting him to NED. It might be a combination of surgery, radiation therapies, chemo, and targeted therapies that attack the EFGR pathway. If someone figures out how to make his cancer vulnerable to immunotherapy, that would be wonderful. Advances are being made all the time. As the Dana Farber researcher said to me, who knows what will be possible in two years?

I am so sorry that your family is dealing with this. It isn't easy. I wish you the best.

[Lee]

I agree with boxhill here. I was 46 when I was diagnosed (5 yrs older than your DH), again stage IIIC. My team threw the kitchen sink at me. FOLFOX & Avastin were experimental drugs, had not been approved by the FDA for stage III yet. My Onc got me on board with FOLFOX through a trial. We had Mayo Clinic in our medical plan at that time, butt they would have the same plan my Onc set up for me, AGGRESSIVELY!! Because I had 2 young kids, we decided to go local, so that I could be home for my kids, butt Mayo Clinic was never far from our thoughts. My Onc used to talk about me possibly going to stage IV, thus Avastin in the back pocket.

The best advice I can give you now. Treat this cancer AGGRESSIVELY NOW. I did, & I am NED today. I had rectal cancer, & took the colostomy route to give me the best possible chance, not to mention bathroom issues. If my Onc wanted me to jump in the air, the response was how high, because I was going to do it to the best of my ability, & she knew it which was why for several months, I was her only patient getting FOLFOX. She once told me, by the time I am finished with you, you are going to feel like a Mack truck hit you, that comment was a good description. She held nothing back when treating me. She was treating me as if I was a stage IV. Youth & over all good health has it's advantages.

Give it all you've got now. Find that AGGRESSIVE team, so that you don't look back with regret. I got to see my kids grow up. They were 9 & 11 at my diagnoses.

JMHO.

Lee

[Gravelyguy]

I have to agree. You want to be aggressive now. I was 51 when diagnosed at stage 4 but was very fit otherwise. My local oncologist said he would keep me as comfortable for as long as possible. That was not good enough.

I had a 2nd opinion at Mayo and they were much more optimistic and aggressive. It was awful to go through the chemo. The chemo makes you feel bad and the steroids make you feel worse. There were days where I had to think ahead to when I was done and other days where I had to just be in the moment. My faith and overwhelming desire to be there for my family got me through some rough stretches.

Today they almost seem like a different lifetime ago.

Hang in there, Your husband can do this!

Dave

[Bpaint]

This board has been so helpful as we've navigated this, so I thought I'd post an update about my husband's treatment.

He just finished 12 rounds (6 months) of folfox + oxiplatin. His CEA has gone from 713 to 113, and his most recent scans show that all of his tumors have shrunk more than 50% or calcified. According to his doctors, the tricky part of my husband's case is the numerous tumors in his distant lymph nodes (up and down his back). Originally his oncologist thought that he would try radiation after 12 rounds of folfox. But now the surgical team is considering a surgery to remove all of the lymph nodes and liver mets. They would not do anything to the lungs right now because the spots are tiny.

Has anyone had a surgery like this, where more than 20 tumors are removed from lymph nodes at once? We haven't talked to the surgical team yet. The oncologist said the surgery would complex but that surgery has a better chance of getting the tumors completely than radiation would.

[Achilles Torn]

This board has been so helpful as we've navigated this, so I thought I'd post an update about my husband's treatment.

He just finished 12 rounds (6 months) of folfox + oxiplatin. His CEA has gone from 713 to 113, and his most recent scans show that all of his tumors have shrunk more than 50% or calcified. According to his doctors, the tricky part of my husband's case is the numerous tumors in his distant lymph nodes (up and down his back). Originally his oncologist thought that he would try radiation after 12 rounds of folfox. But now the surgical team is considering a surgery to remove all of the lymph nodes and liver mets. They would not do anything to the lungs right now because the spots are tiny.

Has anyone had a surgery like this, where more than 20 tumors are removed from lymph nodes at once? We haven't talked to the surgical team yet. The oncologist said the surgery would complex but that surgery has a better chance of getting the tumors completely than radiation would.

Hi Bpaint,
In my case I had lymph node tumors from the Iliac lymph nodes to the Periaortic (sometimes called paraaortic) and was not a candidate for surgery. I had FolFox +Bevicuzimab (Avastin) for 6 months which made them shrink, then maintenance chemo for about 3 years. When they started growing again during my chemo break my surgeon decided to remove them. I had the surgery in early Sept 2020. They opened me up and took out many lymph node tumors from my heart down to my groin area (called it a radical lymph node dissection if I recall). The surgeon said there was more cancer than showed up on the PET scans. This was a much more aggressive operation than my original colon resection and recovery took over a month (1 week in hospital). About 1 month after surgery a PET scan showed no evidence of disease so they recommended against chemo. Unfortunately at my scan in February they found more lymph nodes with active cancer in my mediastinum and pelvis so I will be going back on Chemo.

Despite this disappointment I would do it over again as they believed there was a chance they could remove all the cancerous lymph nodes.

Feel free to PM or ask any questions here.
Keep looking for options, you never know what can happen.

Cheers
AT

[Bpaint]

AT-- thanks so much for your helpful response. Your situation sounds similar, but without the liver mets, which my husband's oncologist has never seemed too concerned about. He has said all along that the lymph nodes are the more difficult thing to address. Originally he did not think surgery would work, but now he has changed his recommendation.

I don't know exactly which lymph nodes are affected, but I know that they are on his back and not confined to one specific area. Does your doctor think removing the lymph nodes gave you a benefit? Or does this type of surgery only provide a benefit if the surgeons can get all of the tumors and they don't come back?

I'm glad to hear that you have kept your disease under control for multiple years on chemo. I don't want my husband to have to be on chemo forever, but if it gives him more time with the kids, we'll take it.

[Achilles Torn]

AT-- thanks so much for your helpful response. Your situation sounds similar, but without the liver mets, which my husband's oncologist has never seemed too concerned about. He has said all along that the lymph nodes are the more difficult thing to address. Originally he did not think surgery would work, but now he has changed his recommendation.

I don't know exactly which lymph nodes are affected, but I know that they are on his back and not confined to one specific area. Does your doctor think removing the lymph nodes gave you a benefit? Or does this type of surgery only provide a benefit if the surgeons can get all of the tumors and they don't come back?

I'm glad to hear that you have kept your disease under control for multiple years on chemo. I don't want my husband to have to be on chemo forever, but if it gives him more time with the kids, we'll take it.

Hi Bpaint,

We can't really know whether the surgery helped me in the long run. Perhaps reducing the overall tumor burden is a good thing.... I do know that they would not have done the surgery if they did not think there was a chance at getting it all (they used the word "cure" but I was highly skeptical at that). I thought it would get me at least a few years without Chemo...so I was disappointed. But In my mind if a surgeon is willing to try to remove all the cancer with acceptable risk to the patient and at least a hope of 'cure' I gotta take that shot.

As for Chemo there is every chance that your husband can have long durable success like many others have had. There are people who have remained stable for 5+ years cycling through standard of care....and there is always hope that new treatments will be developed.

I can tell you that while the start of stage 4 diagnosis is sad and terrifying it is also full of possibility...there are so many ways it can go and many treatments that may work. So believe me that while it is terrible to be hear you have every reason to hope for a better outcome.

-AT

[Siti]

Hi Bpaint,

Glad your husband is responding well to chemo. I just replied to another post with regards to distant lymph nodes — for my husband, he visited 2 hospitals in Singapore and Netherlands, plus offline consultation from an Oncologist in Belgium, unfortunately all recommended maintenance chemo. The only way for a LN dissection is if you’ve less than 3 distant LNs contained in the same location. As for my husband, they found 6 on the PET scan, furthest at the collarbone near the neck. So they believe that the entire chain of LNs are affected.

If your doctors feel like there’s a good chance of cure, then like AT, would definitely give it a go. And since your husband is relatively fit, he would recover quickly.

I think for most Stage 4 patients, the best bet is to try prevent the cancer from spreading in hopes there will be a cure in the near future.

Siti

[Bpaint]

Thanks At and Siti--Your input raises questions I can ask the surgeon when we meet next week. The surgeons and oncologist must think there could be a benefit to removing the lymph nodes surgically for my husband. It's interesting that in Siti's case, 3 doctors rejected the idea. So lots of questions

Thanks again for your responses.