update to update after appointment today

[Voxx66]

Hmmm - not my favorite meeting with my oncologist. Good news - my liver is stable - CEA normal. But there are many (5 or 6 it seems) probable mets in my lungs and there are actually two peritoneal areas around the liver to worry about.

His advice is chemo of course. He said the peritoneal issue around the liver is still small but in hard places to get at. He doesn't think they are likely to cause many problems for the time being. He said he'd get me a surgical consult but he thought a surgeon wouldn't operate now. He said it won't be an easy operation and given the mets elsewhere he thinks it isn't worth the risk. As to the lungs, he said not to worry about them for now as they are all very small and probably won't cause many issues for quite sometime. (unspoken was the statement that something else is likely to kill me before they do) He also said they are distributed in many places and he thinks can't be targeted. I told him as respectfully as I could that I know many people who indeed have had more mets than this addressed and that it most certainly can be done. He said - but you have issues elsewhere.

Here is the point: He also said he believes the 5fu isn't doing much now and that my good liver results are due to the y90. He also says we probably can't do surgery as I have too many regions with mets and he doesn't want me off chemo. Wait - if chemo isn't what is keeping my liver stable and my lung mets are small enough he doesn't want me to worry about them then why CAN'T I have surgery and then get back on chemo? It makes no sense to me.

Anyway - I refused to go on FOLFOX or FOLFIRI for now. He suggested adding Zaltrap or Stivarga to the 5fu as I have troubles with Avastin. I said absolutely not. I have a surgical consult tomorrow morning (that was damned fast at least) but as they are colleagues, I expect to be told the same thing he said today. I told him I would revisit the Folfox/Folfiri decision at my next meeting depending on what the surgeon says but I wasn't sure I was going to be willing to do it. He was very nice about everything and said he wanted to give me options but also wanted to respect my choices. I got the feeling that he no longer believes I am going to make it through this. I can't blame him. I no longer believe that either.

He also told me he was fine with me taking cimetidine.

Anyhow - not real happy with the way things have suddenly turned but I still feel healthy. I am very unhappy about another matter but I will make a separate post about that. Maybe ha.

Oh as a side note - for those of you that remember that fall a few months back that was really messing with me? C/T showed 3 fractured ribs - all healing well. Damn - I knew it hurt but didn't think it was that bad.

[orcasres]

Voxx,

I am sorry things did not go that well. You are being your own advocate, which is good. This is one of those situations where a second opinion seems very warranted. It will be interesting to see what the surgeon says. Lois

[VikingShips]

I am sorry to hear this Especially so at the fact that you were IIA at diagnosis.

It is so odd, how you can feel healthy but still have such issues isn't it?

[Voxx66]

I think I can still feel good as the liver mets are totally stable. The mets around it are very small and not located where they cause issues. The lung mets are also tiny at this point. My liver functions are totally normal as is my CEA.

[canadiandaughter]

Sorry to hear this, but you never know what the surgeon will tell you, just because they work together doesn't mean they always agree!!

[bitchslapped]

Well, I hope this is not a predictor of tomorrow's appt. If you hear similar song & dance @ tomorrow surgeon's appt, I (me) would probably ask for him to get in touch w/anyone he knows @ major hospital or the golf course or on his bowling league for him to consult be it oncologist, surgeon, veterinarian, on my behalf...who gives a shit...or point me in a direction. Maybe a professional buddy from a past medical convention that thinks outside the box. Go in tomorrow in your "A" game on. You may be surprised. Good luck.

bs

[ForDad]

I'm glad you feel well and that your ribs are healing. I'm not an expert by any means in this area, but I wonder if ADAPT might be an option worth looking into. Best wishes to you.

Sue

[raym]

Sorry things have not gone in the direction you wanted. Been there/am there! Zaltrap is not without issue as well and Stivarga, that one scares me as far as side effects.

[Voxx66]

After a bit of research, I am convinced this appointment tomorrow is of the "here - talk to this guy so you can get with the chemo program" variety. Why? This surgeon is a colo-rectal surgeon. He is NOT the guy I would let do the surgery even if he thinks it should happen. So - regardless of what he says I still will need to talk to someone else. Probably I will go to a really good surgeon I consulted about a year ago who actually IS a hepato-biliary surgeon.

However - the more I read about the whole debulking surgery process, the more I realize this is not a minor undertaking. I may indeed be better off doing harder chemo now and waiting until it gets worse before considering a major surgical process. I'm not sure and I don't believe I will be more certain after tomorrow ha.

[Voxx66]

Ok - had my consult. Started off as a mess as some doctor politics got involved. (I had seen a different surgeon earlier for a different problem and they have a policy about switching doctors but we got it worked out).

Anyway - it turns out this doctor has a specialty in peritoneal debulking as well as Crc surgery so I was ok with seeing him. He was friendly and I liked him in general. Basically he told me surgery is doable but may not be wise at this time. He is going to consult with my onc and another surgeon and try to see what they can do and get back to me.

The interesting thing is that they do a different procedure from what I have read about. After the debulking, they install two ports in the abdomen and use them to deliver chemo infusions as needed for at least several months after the surgery. He said at the moment he believes it's better than HIPEC but the jury is still out. Interesting.

I'm not sure what is going to happen but the surgery is massive. And of course, he said that they have to open me up first to see if the spread is too extensive for the operation period. I'd hate to get cut wide open only to have them do nothing. Lots to think about.

[SkiFletch]

EPIC isn't used as often as HIPEC for cases like this, but some folks do it. I know it's practiced at MSKCC and is as you describe. That's about all I know though

[janderson]

you are in a very similar situation as I have been for the past 8 months. I had one liver met and 2 on my lower right chestwall that was discovered after an ER visit. I sent the scan to my surgeon and he ordered an MRI which revealed a second small satelite lesion on my liver so no surgery. I got my oncologist to side with me on surgery and changed my surgeons mind. He had me consulting with him and a lung surgeon to do a dual surgery the following Monday and the surgery that Friday with a chest CT scan in between. I dont understand why he didn't order an MRI of my chest as well the week before. Anyway the chest CT scan revealed 4 more cheswall spots on the upper right side so surgery was called off the day before. I argued with him and he kept saying that the biology of multitple lesions didn't make sense to do surgery which I have heard way to many times for other people. He said get on systemic chemo and see what happens. After just 2 months of chemo ALL of the additional spots were gone. The initial 2 chestwall spots were stable or shrunk but the liver tumor grew a little. I sent the scan to my surgeon since I was back down to the origonal 3 spots when he was going to operate. He said it was too dangerous since the liver tumor grew into the liver a little and it is more risky since it is regenerated liver. He should of operated back in February before it grew.

Since then I did y90 which shrunk the liver tumor and the 2 remaining chestwall tumors shrunk some more. So back to the surgeon. I am waiting to hear from him as we speak. I am also talking to a clinical trial in Colorado which sole purpose is to prove there is survival benefit to surgery, radiation and or RFA to eliminate multiple lesions in more than one organ.

I think it is all BS. If we want surgery knowing all of the risk and recurrence probability then they should give it to us.

[annalexandria]

Maia posted a while back about a procedure that can remove up to 100 lung mets. Just wanted to throw that into the mix of things to think about.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43840&p=313285&hilit=hundred+lung+mets#p313285

[Val*pal]

Voxx,

I'm sorry that you didn't get better news, but happy that you are aggressively following up with the surgeons, etc. At least your liver is stable now.

I'll keep sending positive thoughts your way.

Val

[Marian1961]

I'm sorry you didn't get better news, or at least a straight forward plan. It's so hard when the road forks in 8 directions and you have to make a decision a bit in the dark.

And on a ridiculous side note---why is the term "debulking"? It always makes me think of wheelbarrow loads of stuff.