What to do?

[KWT]

So I saw a new onc today and of course suggested Folfiri. My problem is that on last scan everything was stable except it looks like one spot went from 1.7 to 1.8 that seems pretty stable that could easily be just a measuring discrepancy, I would think. So why not stay on the same somewhat easily tolerated regimen? I think he thinks that with the Cea increase and a slight different Size equals progression. Or is he just taking the better safe than sorry approach. He said if I want to continue the current treatment he's fine with it but next scan may show progression.

What would you do? I know many would follow the oncs recommendation but I really just feel like they don't know and are guessing most of the time anyways.

[megan120]

That's a tough call, Kenny. How many rounds would the folfiri be for? I think that would be a big factor in my decision. My motto has kind of been "I can do anything xx times" so I would probably at least give the folfiri a try and go back to the adapt + avastin if the side effects were too much. Who knows, maybe that could take you from stable to a decrease in size? Good luck with your decision, it sucks having to make them.

[Maddielolo]

Kenny, I think it's worth considering. Given your CEA rise, perhaps folfiri is a good answer, and you can def handle it. I think it may be the more aggressive choice, and you can always go back to adapt.

[lpas]

Is he ordering a PET, Kenny? I think I'd be inclined to wait for the results of that before deciding. Seems like the ideal would be to know more about what you're dealing with before making decisions about how best to address it. Aren't different types of chemo sometimes more or less effective depending on where your cancer is located? Maybe the PET won't show anything and you still won't know but it seems at least worth a try.

[weisssoccermom]

Kenny,
I have absolutely no experience with FOLFIRI so can't be of any help. However, my attitude is that only YOU can decide what is best for you and for your situation. How well do you tolerate FOLFIRI? What is your QOL on Folfiri.....compared to your QOL on your present protocol? What is the onc's position on doing a PET now? Does he think it will prove useful? Has the new onc told you how long you would do Folfiri before the next scan? How many treatments, if any, would YOU be willing to do before another scan? Have you asked the new onc why he feels the CEA might be rising? It would seem to me that if, as you surmise, the new onc is believing that the slight increase plus the increase in CEA indicates growth, he should at least be able to tell you that. I don't know....CEA was never a good indicator for me, so if my CEA had jumped the way yours has, I would want to know what the onc thought about that. What is his thinking on that subject?

I guess what I can see is that it boils down to risk v possible benefit....and again, only YOU can decide that one.

[CM35]

Sorry Kenny. Is this new onc a colleague of your old onc? If so, I think a change of facilities may be in order. You had a hell of a CEA increase, and they do ONE ct scan, that doesn't show anything new, and all they have to offer is "let's add more chemo?" Not, "let's keep looking and see if we can see what's causing this?" That is crap. My humble opinion, of course. I am sorry you are having to deal with this. Cancer is shitty enough without having less than ingenious doctors added to the pile.

[KWT]

This onc is at the same center as my former onc, so I'm not expecting too much difference in opinion they won't step on each others toes. He thinks that a pet may not be beneficial at this point. That's why I'm going to see our Belles onc in Portland. As far as the Cea increase he just doesn't know but sees nothing at this point to suspect a new location.

It just seems that switching a regimen that's keeping me stable is odd.

[lpas]

When is your appt with Belle's onc?

I agree with Colleen. If they don't want to do a PET, I'd want to know what the alternate plan is for finding an explanation on the CEA rise, ASAP.

[juliej]

I was wondering about the PET scan too. I feel like you need to find out what's causing the big rise in CEA before you can make an informed decision. I would ask the PDX onc for a PET and tell him you want to know what you're dealing with before going forward with a different chemo.

[KWT]

I'm going to sit tight until I see dr Crocenzi in Portland this Thursday. I'll ask him for the petscan. my visit today was a lot to do with just keeping a local relationship.

[janderson]

.1mm can easily be a measuring discrepancy. I think you are stable. I would stick with ADAPT. Save the hard stuff for when you really need it. In fact I am hoping my upcoming scan is stable. If so i might even take a a short break from ADAPT.

[TheLadySkye]

I apologize ahead of time because I'm fairly late to the party and I don't know what chemo you've been on previously or what kind of side effects, etc. And of course that decision is yours to make based on what YOU think is best, so please color this response with Skye-colored glasses. But if it were me...

1). I would insist on a PET and a colonoscopy and an endoscopy. All STAT. Because the CT isn't giving you answers, and it's awfully hard to make a decision when you don't have all the facts. And even if those tests are equally inconclusive, they will help rule out some of the possibilities floating through your head (like a colon recurrence - the bowels are hard to visualize on CT and are far from conclusive - or bone mets or something elsewhere in the body parts that were not scanned).

2). I would try to get a consult with Dr. Lin - in person, by phone, by email - my understanding is the he often works with remote cases and has been willing to work with folks who are following ADAPT outside of his direct practice. He could perhaps offer better advice re: which chemotherapies work best in conjunction with ADAPT and which ones may ADVERSELY carry any impacts.

3). I would want to know the short-term game and the long-term one as it pertains to the proposed chemotherapy. As someone said above, I'll figure out a way to gut out the hell that is FOLFOX for 12 treatments. But I can't imagine being able to take that approach if that is the chemo for life. The effects are too debilitating for me. That being said, when my doctors discussed varying chemotherapy options prior to my own treatment, they also said, "FOLFOX is the big guns." To which I said, "Bring it." I don't know if that is an option for you, and the addition of Irinotecan has made it even moreso in a couple studies I have found. While I can see this as a "Kill it with fire!" approach for a time, I can't see that long-term, and so I would want to know what happens next. And of course there are no crystal balls. Are future surgeries an option? Is a long-term chemotherapy needed thereafter? Your current regimen seems wonderful if the side effects are minimal and your scans are stable, but obviously one has to circle back to the CEA rise and what's going on with that, because current chemo doesn't seem to being with THAT. But you can't answer that til you even know what's what.

That got very circuitous in a hurry. My apologies. It's a lot to think about. I guess I would start with all the tests every and try to get a definitive answer on the cause of the rising CEA levels first. Otherwise you're shooting in the dark. Which may sound like an exciting hobby, but probably not what you're going for here. I'd also reach out to Dr. Lin re: the ADAPT part and how other treatment may impact. Then I would aggressively beat the hell out of whatever is found and then ease into the long-term.

Hopefully your appointment with the new onc will also yield some much-needed information and access to further testing.

[bitchslapped]

I agree with that since you have a file w/Dr. Lin, unless you got "the letter" re: his patient load:

2). I would try to get a consult with Dr. Lin - in person, by phone, by email - my understanding is the he often works with remote cases and has been willing to work with folks who are following ADAPT outside of his direct practice. He could perhaps offer better advice re: which chemotherapies work best in conjunction with ADAPT and which ones may ADVERSELY carry any impacts.

And that:

I'm going to sit tight until I see dr Crocenzi in Portland this Thursday.

And worry about local later. Crocenzi may know of an onc near you for regular infusions if it comes to that.

Just my 2 cents.

BS

[KWT]

Part of my thinking with this is that if this shit is somewhere other than my lungs what's the use anyway?

[juliej]

Part of my thinking with this is that if this shit is somewhere other than my lungs what's the use anyway?

I totally get where you're coming from, but don't throw in the towel yet. When I was diagnosed there wasn't any hope for me. The only ones on this forum who had surgery for liver and lung mets were people who had liver mets first and then got lung mets later - or the other way around. No one would touch someone like me who had both at diagnosis. It was metastatic, if I had surgery it would spread while I was recovering, it was against all protocols, etc., etc. You can imagine what they said.

And yet look what happened. An oncologist who reportedly only took patients with just liver mets looked over my case and saw something no one else did. Blam! Surgery #1. Blam! Surgery #2. And then I was in the clear. My local oncologist didn't see that coming, believe me. And all those days and nights that I despaired of ever finding something that would help me were over. So leave the window of hope open a crack, okay? Find out what's going on. Make a plan. Be aggressive and stay strong.

Hugs,
juliej