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Damned thing is back!

menright's picture
menright
Posts: 258
Joined: Oct 2008

I just received word today that after 4 months of what felt like a cure, the cancer is back. I had two spots on my liver and the Chemo killed them off. Life was good and getting back to normal.

Well today that ended. There are 3 spots on the liver and worst than that one of them is on the opposite side so surgery is not an option. Cancer sucks!!!!!!!

Recurrence is now my experience. I would love to hear how others have dealt with the roller coaster effects. I was 4-months NED and suddenly I am planning for more chemo.

Mike

lcarper2
Posts: 638
Joined: Dec 2009

I was given the green light march 12th and told ONC my back was killing me sent for a c scan and enhanced MRI I now have liver cancer and pancres cancer...Yes it does suck

mom_2_3
Posts: 965
Joined: Nov 2008

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

AnneCan
Posts: 3692
Joined: Oct 2009

Sorry to hear this, Mike. Good luck with next steps.

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

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
Posts: 202
Joined: Jan 2010

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

Stefi
Posts: 31
Joined: Mar 2010

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.

impactzone's picture
impactzone
Posts: 542
Joined: Aug 2006

This is year 4 for me and I have been NED at times and then recurrent with 2 lung surgeries and liver resection. How do you know surgery is not an option? Have you gone to a major center? Stanford was great for me and they had a great liver surgeon. Maybe resection and some RFA?

Chip

Erinb
Posts: 295
Joined: Apr 2010

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.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Mike,

Very sorry to hear it's back again. I just wanted that when I had my liver resection a while back, I did have mets on both sides- I had the entire left lobe removed and a wedge resection on the right lobe. It might depend upon the location on the other lobe, as mine on the right lobe was near the surface and just a wedge was taken out.
I now have liver mets again too (as well as lung) that I'm fighting, but I'm still glad I had the other resection back then. It's still prescan for me, so not sure what I'm dealing with or not now.
It does suck- I'm sorry- I know the feeling too well. Mine came back once after 4 months and once after 5 months. But, then we fight on again! I know it's lousy, but you can do this- fight on and I'd get another opinion on the liver surgery. Maybe they could remove the mets in one lobe, then do RFA or microwave ablation on the other side. It's worth mentioning and asking someone else about.

Take care,
Lisa

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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

dorookie
Posts: 1736
Joined: Jul 2007

I remember going through my first round as a stage 3, I was like a robot, just doing what I was told I had to do and when it was over, well for me it was like a distant memory. Well then just a few short months later I got the news you got, it was back, this time in my right lung, now stage 4, I was lucky if that is possible to have only the one spot. I had surgery and did another 8 months of chemo, the second time was such a mind screw, if you know what I mean. Its when it hit me hard that this whole cancer thing was real, I went through so many different emotions, and the fear of really facing possible my own death. I was just a mess, not sure how I survived, well I do, I believe in God and I know he got me through it. Its not easy but I know you can do it, so do you, because you have already done it once before, now its just another walk in the park with a few bumps here and there. I have been cancer free for 16 months if you count from when I had the tumor removed, or 10 months from when I finished chemo, either one is pretty good. I get scanned every 3 months and my scans are coming up in June, the fear never leaves me, even when I am feeling good, because you just never know. I pray and try to keep a positive attitude, and try to live every bit of my life best I can. My prayers will be with you, stay strong and keep the faith my friend.

Love
Beth

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

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

menright's picture
menright
Posts: 258
Joined: Oct 2008

Phil:

Thanks for taking the time. I now agree and will be far more cautious about proclamations of NED. It was self created for me. My oncologist would never say it so I decided to make it so. I have now learned a valuable lesson and appreciate your story and lessons.

Best wishes with your upcoming scan.

Regards,

Mike

Hatshepsut's picture
Hatshepsut
Posts: 340
Joined: Nov 2006

As usual, Phil, you have the courage to tell it like it is.

Yours in a courageous, frank, and obviously heartfelt statement about the realities of a colon cancer diagnosis--a very nice piece of writing, too.

Like everyone else who has a loved one with cancer, I want my husband to be cured. More than my words can express, I would like to be able to say that my husband HAD cancer and put a period at the end of the sentence. While others may be more lucky, four years into the fight and numerous recurrences later, I know that is not likely to happen for us.

Like you, I've come to realize that a person can live with cancer as a chronic disease, but (again like you) I realize that can only happen if we are vigilant every second of every minute of every day. This was not an easy realization for me; my approach has always been to downplay symptoms and assume the best. Every time we've been lucky enough to have a CT or PET scan that showed no evidence of cancer, I've dared to hope that that finding would somehow be permanent only to see the cancer recur. Even today, my heart tempts me to keep doing that despite evidence to the contrary.

The important truth I've learned fighting my husband's disease is that you can't ever take your eyes off the enemy. That kind of vigilance puts you on the top of the curve, grasping the best therapies at the earliest possible moment when those therapies can be most effective. While it is tempting, it is counter-productive to wish so much for a cure that you miss the opportunity to take action when you need to take action.

I also realize that any of us can lose this fight and it is important to make every moment, every joke, and every kindness last.

Hatshepsut

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Phil,
Thanks for sharing. Truly, your words mean so much to us as you have "been there" and you are living life. You're awesome!

Aloha,
Kathleen

greybeard64's picture
greybeard64
Posts: 254
Joined: Mar 2010

I have been in the same boat, longest stretch was 6 months before it reared its ugly head again. Try to stay positive. As for how I dealt with it...rode the motorcycle, spent time with grandkids...anything to keep myself focused on good things. And during the times that didnt work beat the S$@# out of a heavy bag! I'm sending good vibes your way.
greybeard

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I totally agree with your post, and don't believe with all the recurrances that happen, that rarely is anyone NED, it's a nice thought, and we're all hopeful for it, but it's happened way to many times in such a short times that these cancers do come back, If my onc says I was ever NED, I would just sit there and say, "Yeah, whatever", because I know that it's still in my blood, I'd feel it, I know one day it's going to come back. Rarely do I think people will be NED until they die, of course maybe that can happen where someone can die of something else other then cancer, but I am also hopeful, and don't want others to not feel the hope, but I am only talking about my opinion, and it's always been like Phils, I always think it should be after awhile..NEDY (No Evidence of Disease Yet) No offense to anyone though. I believe they can make it go away for awhile, but it just never seems to stay away, even if it's been years since one has had it.

Hugsss!
~Donna

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

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

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

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

michelle

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I'm sure staging has TONS to do with this too, Stage I is VERY different than Stage IV. NED carries more weight in a lower stage I believe.
NED, SCHMED...try and LIVE life!
-phil

Hatshepsut's picture
Hatshepsut
Posts: 340
Joined: Nov 2006

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

vhtqm1's picture
vhtqm1
Posts: 107
Joined: Feb 2010

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

elizabethgd
Posts: 146
Joined: May 2009

Sorry to hear that you have had a recurrence I, also agree with Phil's thinking on this topic of "NED"...
I hope all goes well with you and everyone here will be offering you support.
Elizabth

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

I agree with others that you need to go for a second, third or even fourth opinion. Even if the tumors are on either side of the liver, if you only have three, I think you have options. Some doctors want systemic chemo then a liver resection so this may not be bad after all. I agree, cancer sucks! Keep fighting!

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