Damned thing is back!

Mike
Mike,

I am sorry to hear that you are having to face this again. I was under the impression that you were planning on liver resection previously? I didn't know that you did just chemo.

I am not sure what you mean that surgery is not an option because the mets are on both sides of your liver (bilobar). I was diagnosed with 5 liver mets, 3 on one side, 1 on the other side and 1 smack dab in the middle. I have read in so many different threads that doctors tell a patient they are not operable because the mets are on both sides. The first doctor told me that as well. But when I went to MSK no one has ever even mentioned that. I met someone who had 50 mets all over the liver and has been in remission for 7 months now. I am not saying that it is absolute that you should be operable as the position of the mets within the lobe could be an issue. But, just having mets on both sides of the liver does not preclude surgery. I would get additional opinions, preferably from hepatabiliary surgeons.

I know that you are feeling a bit low from hearing of the recurrence but you need to garner your strength and energy and fight again. You can and you will do this. If there is anything I can do for you, please let me know.

Amy

Oh, dear.
Oh, Mike.

I'm very sorry to read this. I'd been thinking about you lately and assuming that, since you hadn't posted lately, things were going really well. I pray the right course of action will make this recurrence a one time event.

*hugs*
Gail

C Dixon said:

Radio Frequency Ablation
RFA can be quite successful with the liver. Check into it. Mine came back (although I don't think it was really all gone even with clear scans and normal CEAs) within three months of being done with 12 rounds of Folfox. I found out when I went in for a liver resection that there was still active disease on the diaphragm. But, they resected my diaphragm, RFA on some spots on the liver and a HIPEC. I just finished 12 rounds of Folfiri and have had clean scans and normal CEA's. So, I am attempting another four months without chemo.

I'm sorry you are having to go through this; I know what it feels like. Take some time to just breathe and then start putting one foot in front of the other and pulling your boot straps up to get ready for the battle. I'm pulling for you.

Catherine

2nd Opinion?
My mom has 3 spots on her liver (1 on 1 side and 2 on the other). The liver surgeon at our hospital said he would definitely go after all 3 spots after some chemo first. I think I heard it on here many times that people have had this done, so dont give up and maybe get a 2nd opinion from another surgeon.

Cancer does Suck!
My husband has went through so much and life was getting back to normal-really normal. Not just the feeling good because it was your week off of Chemo, but really feeling good. I forgot what it was like. But then, just after two monthe, the cancer came back and we're trying FOLFIRI and Erbitux and in the mean time I'm making appointments at OSU to meet with a radiologist to see if that is an option. The liver mets that he previously had RFA on became active after two months! Sloan-Kettering won't take him unless he is off treatment? Will he ever be off treatment? This is a great board with a lot of well informed people. Good Luck and hang in there.

Mike
Mike,
So sorry to see that it has come back. This is indeed a horrible disease. It sounds like people have given some good ideas. I'll be thinking about you.


Aloha,
Kathleen

Mike
I'm sorry to hear that you are going through this. What I am going to post may not be well received. I certainly mean no harm nor do I feel that things are hopeless. Quite the opposite. I have noticed that many folks on here are in such a hurry to be declared NED that I feel it's often very premature. So much so that I have noticed that more than half of the folks who say they are "NED" or "cured" are suddenly back in the saddle with cancer after a short time. It takes years to develop cancer, it often does not go away just like that I've found. Now this is me talking about my experience and observations having been living with stage IV colon cancer for over 6 years and a member of this site for 6 years too. After each of my 5 surgeries and 2 ablations I've heard the surgeons say "it looks like we got it all". That's seven times I've heard what could be interpreted as NED. Not once did I ever consider myself NED. You can call it what you want but I always thought that it doesn't go away just like that. Out of all 7 times, not once did my Oncologist tell me that I was NED. From the beginning we've been striving for me being "cured" but the nature of the beast is that all it takes is one little cell to escape and then you could have a recurrence if you want to call it that. I don't know if everyone's Surgeons, Oncologists, or just the pressure those doctors feel from their patients cause them to make that call or if the doctors are so confident that they feel they've beaten cancer.

After many, if not most of my surgeries I've gotten to a point where things look "stable" so I've been given breaks that usually last 2 months. I savor every one of those. I am coming to the end of one right now. I'll be getting scanned soon and we shall see where I'm at right now. Last scan showed some spots but she's not sure if it's something still there or if it's just me. I'll find out soon enough. I am expecting to go back on Erbitux for another time around the park.

As much as I wish I never got cancer or that it would just go away, I still have it and we are roommates it seems. I'm living with cancer, not dying from cancer. I kayak, garden, play with my kids, fish (OK, drown worms) and many other things but I am not about to get on the roller coaster of wanting so much to be NED only to find out that "it" followed me and is along for the ride. We ALL deal with this as best we can and how we think it will be best for each of us. I don't claim to know any answers, I only know what works for me. I do know if I heard the word "NED", I would be VERY skeptical. Happy but skeptical.

Now, back to you Mike. OK, still with me for second. Cancer is a series of new normals I've found. I can certainly relate to having time off and feeling as good as it gets, only to be back on the chemo. It sucks. I'm confident that there must be options out there for you. I had numerous spots on my liver, some on my hepatic artery so I was inoperable. I went on FOLFOX/Avastin and the Avastin shrunk the liver tumors so they became operable. It worked extremely well for me. Possibly that could be tried so it could put you in a position where they could operate and remove the spots. There is also RFA (Radio Ablation) where they fry the tumors. That is not invasive and quite successful. I would certainly investigate that option and also explore getting a second opinion from another oncologist.

I am truly sorry that you are going through this roller coaster as I am for the countless other members here who have gone through the same thing. There is hope for NED or being cured. I've rarely seen it happen just like that though unless it's an early stage like I or II.

I have learned to like lemonade since that is often what is served to me.

I wish you the best Mike. I hope I didn't offend you or others. I strongly believe that attitude is 90% of beating this or of living a long life with it.
Keep fighting.
-phil

geotina said:

NED
Glad you got it out there Phil. Way too often I read NED and then a few weeks or months later, not so fast. I don't even go there with George so we are very happy with stable and shrinking and consider his cancer as a chronic disease. I saw one poster use NEAD - no evidence of active disease. They felt that they would always have the disease, just not active at the moment.

Tina

Mike
Things will work out i am hoping for that, take care


michelle

Knowledge is power.
Mike:

I'm sorry to read that you have had a recurrence.

Like you, my husband has had a serious recurrence and is back on chemotherapy.

I wish there were coping techniques I could say we used and that worked to deal with the disappointment, anxiety and fear that hit you all at once when you have a diagnosis of a recurrence. We've found that you simply have to work your way through those emotions. Once that is done, you dust yourself off and start fighting again. That doesn't mean, by the way, that the emotions don't resurface now and again. They do.

I do think that one very positive thing people who suffer recurrences have going for them is that they are much more knowledgeable about colon cancer. That means, of course, that the cancer enemy faces a much more powerful adversary . As someone wise said, "Knowledge is power...and attitude is everything."


Hatshepsut

don't take it as negative
i too am in the same line of thinking as Phil. in retrospect if the Oncologist had told me almost 4 years later i'd probably still be on chemotherapy, well, i'm just not sure how i would of digested that? i remember being told to "get my affairs in order" when initially being diagnosed and the way i digested that was ""yeah right!!"" lol...so, with that particular experience i guess my answer if i was told that chemotherapy would probably be a lifetime treatment would have been the same===yeah right.... i'm still striding for that NED experience (again) which has happened for me once for over 6 months until 2 lesions were discovered on the liver again. i say again because initially i did have mets to liver among other places and became a surgical mirracle after my first round of treatment. so the advice i'd like to share with you???? you were NED once let's do it again!! hope all is well.

ed