Soliciting Opinions

Real Tar Heel

Onc gave me a clearer picture of the situation, though clear as mud now as opposed to, I dunno, clear as poop?

They're only confident about 2 mets, the rest wait and see for the PET scan

Tumor board is split over the best course of action. FOLFIRI + avastin and surgery or just surgery. The chemo group says it is more pragmatic to attempt to "box in" the recurrence and then cut. The surgery group says the best chance is to strike while the iron is hot given no signs of spreading outside of liver in over a year. No one is high on a surgery then FOLFRI option saying that FOLFRI is less effective after surgery for unknown reasons. That or radiation would be a hail mary (also RFA was not a big success)

Of course, this is pre-PET scan, which assumes no spread to brain or lower extremities. If it's already spread I'm definitely in the poop group

Onc says it might not be worth it for more chemo, but would like to test the pathology sample for mutations. Surgeon ironically sides with the chemo group.

In case you're late to the party, I was dx in 2019 w/ 4cm right side colon tumor, which was removed. Then they found a 1.4 cm met in liver, ablated. Had FOLFOX 12 which ended in 2020. CEA started to rise for first time.

So, what do you guys think? I am already leaning in one direction, but I can be convinced. FOLFIRI and surgery or just the surgery?

zx10guy

If it were me with liver

If it were me with liver spread, I wouldn't screw around and would be contacting Dr. Nancy Kemeny at MSKCC in NYC.  She's one of the premier doctors in the realm of treating metastatic spread to the liver.  She's the one that pioneered the use of Oxali that is now the standard first line treatment with 5FU.  She also invented teh HAI pump treatment.  She has gotten patients which were told chemo for life to the point where they could have surgery and many patients that have been NED for a long duration.

SnapDragon2

I agree with zx10guy.

I agree with zx10guy.

Here is an interesting article also.

https://www.medscape.com/viewarticle/935145

 

Real Tar Heel

Thanks for the responses.

Thanks for the responses.

To make it more clear, my docs are in agreement that I need a resection. Surgeon is 100% that he can do it. The question is chemo before or no chemo at all.

I thought the HAI pump was discontinued by the manufacturer? It was my understanding that if the tumor(s) is resectable then HAI is not recommended.

It would be awesome to have the same doctor as a Supreme Court Justice but I don't know if I have that kind of time, unless you guys are suggesting I seek her out after this.

 

SnapDragon2

I think the HAI pump is done

I think the HAI pump is done at same time of resection.

zx10guy

I only mention her

I only mention her contribution to developing the FOLFOX6 treatment and the HAI pump to illustrate her knowledge and expertise in treating CRC along with liver mets.  I'm not saying you need an HAI pump.  I'm just saying you should consult with her to get her opinion on which way to proceed with your treatment plans.  I know of one friend's brother that is under her care.  And I mentioned Dr. Kemeny to a member on this board in one of their posts.  The member sent me a PM a little bit ago thanking me for providing her name as the member is now doing much better under her consult.

As to the HAI pump, it's done to treat tumors in the liver that can't be normally taken out by surgery.  It's done to shrink the tumor load to get the patient to the point where surgery is an option.  And yes, the HAI pump is discontinued by the manufacturer.  It's been a while since I tracked this issue.  But I seem to remember various cancer centers snatching up the remaining supplies and discussion of working with another manufacturer to produce a suitable replacement.

worriedson714

What if

If it was me I would do the chemo and surgery cause if I did just surgery and if didn't get it all . I would always wonder what if I did the chemo Good luck wishing you the best 

FLPalm

Real Tar Heel said:

Thanks for the responses.

Thanks for the responses.

To make it more clear, my docs are in agreement that I need a resection. Surgeon is 100% that he can do it. The question is chemo before or no chemo at all.

I thought the HAI pump was discontinued by the manufacturer? It was my understanding that if the tumor(s) is resectable then HAI is not recommended.

It would be awesome to have the same doctor as a Supreme Court Justice but I don't know if I have that kind of time, unless you guys are suggesting I seek her out after this.

 

Hi there,

in 2015 I was stage 4 with Mets to liver.  Colon and liver resection and the Folfoxiri plus avastin all year. Liver met recurrence in 2017.  I only had surgery (as quickly as possible).  I kept additional chemo in my pocket in case it didn't work or if a future recurrence happened.  I'm clear since then.  And I still have the chemo option should anything else happen.  I didn't want the cancer to be able to mutate and make the chemo ineffective in the future.  So far that has been a good solution for me.  I wish you the best and know you have a difficult decision to make.

Real Tar Heel

I received more clarity after

I received more clarity after further discussion. TL;DR, surgery is more of a guarantee than chemo + surgery because of the speed with which the new mets grew (Compared to the original tumor in the colon) after chemo ended. It isn't that FOLFOX did nothing, because no tumors appeared during chemo. But perhaps it didn't do enough. Waiting on a few rounds of chemo might be a risk. Take out the known risks.

Only thing I'm not cheesed about is that he wants to cut and burn, I'd like him just to cut and be done with it. Liver grows back...

If I'd had a tumor when I was on FOLFOX there might be greater evidence available that it was an effective treatment for me (want to emphasize *for me* for other people reading this). Surgery is always the surest shot. I am lucky in that surgery is an option. It is not for so many.

Upside, they can look to see if these tumors are different from the original one which could open up new treatment options should tumors reappear.

Real Tar Heel

FLPalm said:

Hi there,

in 2015 I was stage 4 with Mets to liver.  Colon and liver resection and the Folfoxiri plus avastin all year. Liver met recurrence in 2017.  I only had surgery (as quickly as possible).  I kept additional chemo in my pocket in case it didn't work or if a future recurrence happened.  I'm clear since then.  And I still have the chemo option should anything else happen.  I didn't want the cancer to be able to mutate and make the chemo ineffective in the future.  So far that has been a good solution for me.  I wish you the best and know you have a difficult decision to make.

thanks

Hi

I have the same mindset, so does my surgeon. Thanks for the well wishes.

beaumontdave

Real Tar Heel said:

I received more clarity after

I received more clarity after further discussion. TL;DR, surgery is more of a guarantee than chemo + surgery because of the speed with which the new mets grew (Compared to the original tumor in the colon) after chemo ended. It isn't that FOLFOX did nothing, because no tumors appeared during chemo. But perhaps it didn't do enough. Waiting on a few rounds of chemo might be a risk. Take out the known risks.

Only thing I'm not cheesed about is that he wants to cut and burn, I'd like him just to cut and be done with it. Liver grows back...

If I'd had a tumor when I was on FOLFOX there might be greater evidence available that it was an effective treatment for me (want to emphasize *for me* for other people reading this). Surgery is always the surest shot. I am lucky in that surgery is an option. It is not for so many.

Upside, they can look to see if these tumors are different from the original one which could open up new treatment options should tumors reappear.

I hated it when they made the

I hated it when they made the choice sound like a coin flip. At the first recurrence when the onc. was showing me the three sizable liver tumors in three seperate areas of the liver, he asked ME what I wanted to do, radiation, chemo, or surgery. I almost yelled that I wanted the damn things out of me, and he just nods and says "yeah it always seems to come back with the other two. I went out of there shellshocked. I wanted to hit the guy who was my only hope, I was angry that there wasn't a clear, automatic road to removing the cancer, as I'd been led to think, up to that point. Well I stuck it out, had the resection and it's worked out, I feel fairly safe 6 years out, but I'll never not wonder. Best of luck to you with your choice, I'm glad your seeing enough opinions and confidence to make it feel a bit more than a coin flip...................................Dave

Real Tar Heel

beaumontdave said:

I hated it when they made the

I hated it when they made the choice sound like a coin flip. At the first recurrence when the onc. was showing me the three sizable liver tumors in three seperate areas of the liver, he asked ME what I wanted to do, radiation, chemo, or surgery. I almost yelled that I wanted the damn things out of me, and he just nods and says "yeah it always seems to come back with the other two. I went out of there shellshocked. I wanted to hit the guy who was my only hope, I was angry that there wasn't a clear, automatic road to removing the cancer, as I'd been led to think, up to that point. Well I stuck it out, had the resection and it's worked out, I feel fairly safe 6 years out, but I'll never not wonder. Best of luck to you with your choice, I'm glad your seeing enough opinions and confidence to make it feel a bit more than a coin flip...................................Dave

Thanks

Hi, thanks for the comment. Surgery is on for Thursday! I'm ready to get these things out of me. I'm hopeful, which is all I can be, and of course thankful that surgery is an option for me. I get the anger, lol, my docs are not punchable at all, I'm fortunate that I feel I can trust them and like them and I know that they are agonizing over the decision...not as much as I am, but still agonizing.

worriedson714

Real Tar Heel said:

I received more clarity after

I received more clarity after further discussion. TL;DR, surgery is more of a guarantee than chemo + surgery because of the speed with which the new mets grew (Compared to the original tumor in the colon) after chemo ended. It isn't that FOLFOX did nothing, because no tumors appeared during chemo. But perhaps it didn't do enough. Waiting on a few rounds of chemo might be a risk. Take out the known risks.

Only thing I'm not cheesed about is that he wants to cut and burn, I'd like him just to cut and be done with it. Liver grows back...

If I'd had a tumor when I was on FOLFOX there might be greater evidence available that it was an effective treatment for me (want to emphasize *for me* for other people reading this). Surgery is always the surest shot. I am lucky in that surgery is an option. It is not for so many.

Upside, they can look to see if these tumors are different from the original one which could open up new treatment options should tumors reappear.

this convinced me to change my mind

Good choice going with the surgery and good luck with the surgery 

Real Tar Heel

worriedson714 said:

this convinced me to change my mind

Good choice going with the surgery and good luck with the surgery 

Thanks man. I appreciate it.

Thanks man. I appreciate it.

Allidoisyoga

Good luck

Sending love and strength for your surger... which is tomorrow?

 

Big hugs... I am so sorry you are going through and hoping the surgery is successful. Look forward to hearing how it went. 

Talk soon. 

SnapDragon2

I am happy you are having

I am happy you are having surgery to get it out of there!  Let us know how you are when you can.