mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[janeandrea]

Hehe, I guess my post up a few wasn't clearly written, sorry. Yep, I get it now - actually I always knew, after the lung mets started growing, that I was Stage IV at dx. I just did not get it previously that that is the ONLY way you are Stage IV. Thanks!

[pollo65]

Well. Just another day in the life of a stage four. Saw my onc today for results and I have 3 glowing nodes. One is precisely where it was the first and second time prior to chemos. He noticed that it had never been biopsied so now I am waiting to hear about biopsy appointment. He seems to think it might be....slim chance...a. inflammatory process. If it comes back cancer I wiil be going to xeloda with avastin. Probably the worst news was that my sweet once is leaving to do genome research. Anyway feeling kindof deflated at this point.
Pollo 65

[skypup]

Well. Just another day in the life of a stage four. Saw my onc today for results and I have 3 glowing nodes. One is precisely where it was the first and second time prior to chemos. He noticed that it had never been biopsied so now I am waiting to hear about biopsy appointment. He seems to think it might be....slim chance...a. inflammatory process. If it comes back cancer I wiil be going to xeloda with avastin. Probably the worst news was that my sweet once is leaving to do genome research. Anyway feeling kindof deflated at this point.
Pollo 65

I am so, so sorry to read this and praying for you that the biopsy comes back noncancerous. I want so badly for you to remain in Nedsville, giving great hope for all of us. (((Pollo65)))

[dougly do right]

today i was told i have 6months to a year, i really don't know what to think. 53 years old and told that there wasn't much hope. i want to get every thing in order so my wife and kids don't have to much to worry about. i hope that i can take everything like a man. i cry every time i think about my kids and wife. my boy are grown men, but i still know i will miss so much.i started off with colon surgery than liver surgery and 7 treatments folfox 6 now it has moved to lymph nodes chest,under arm pits and also a spot on my liver ,lit up with the pet scan. i really feel down, don't know why i wanted to tell everyone my problems, but i just had to tell someone. going to try to enjoy the time i have left, 1:30 and can't sleep, thank you for reading this doug

[Em6040]

Doug,

You are still breathing and there is hope. Hvae you gone for a second opinion, a third? No one can put a time-line on your life but our God. When he is ready he will take you, but until than my friend, keep fighting. Have you looked at alternative therapies - DCA - ANything but believe in miraclkes Doug, many people were given time here and surrpassed that in in some cases years later tell the story. That could be you Doug...just don't give up

[Cb75]

Hi Doug,

I am sorry to hear your news. I am a bit confused as to why no other options were offered by your oncologist. There are other chemos that can be tried to keep this disease under control. I understand from your post that you have only tried folfox. Please, get a second opinion.

If there s anything you need, please know that we are all here for you.

Carm

[Ashlee H.]

Pollo - Pesky nodes! I'm hoping it's just inflammation, and if not, hope they are in an area that can be removed. Hang in there! Many of us keep knocking the nodes down.
Hugs.

[Ashlee H.]

Doug - I was originally given 6 months. In July it will be 4 years since DX. The best thing I ever did in this fight was to change my ONC who is wiling to try all that is available to me. Right now I'm on FOLFIRI and a new drug ZALTRAP, and my numbers are slowly going down. As far as getting everything in order to make it easier for your family - has a husband and father it's best to have all that paperwork in order - even if you weren't fighting cancer. We all tend to put it off. Getting your paperwork in order does not mean you accept you will die soon - it's just protecting your family. Get it done, then put it aside. It will relieve a little of your stress. I hope many of our posts on this site gives you hope that your are not out of options.

[Kathryn in MN]

today i was told i have 6months to a year, i really don't know what to think. 53 years old and told that there wasn't much hope. i want to get every thing in order so my wife and kids don't have to much to worry about. i hope that i can take everything like a man. i cry every time i think about my kids and wife. my boy are grown men, but i still know i will miss so much.i started off with colon surgery than liver surgery and 7 treatments folfox 6 now it has moved to lymph nodes chest,under arm pits and also a spot on my liver ,lit up with the pet scan. i really feel down, don't know why i wanted to tell everyone my problems, but i just had to tell someone. going to try to enjoy the time i have left, 1:30 and can't sleep, thank you for reading this doug

No one can give you an expiration date - not until the very last weeks/days - then they can often be pretty accurate. I've had multiple metastasis all over my body for years, and I am still here! Almost a year ago my oncologist and I were really worried that it had spread too much and I might be nearing the end. But I got radiation to bone mets, Xgeva shots to help build my bones back up, and started back on Irinotecan, but with Zaltrap instead of Avastin. It worked wonders to beat the cancer in the multiple nodes back down again. Then I had RFA done to a spinal met that was bad and already had max lifetime radiation. I took a chemo break and had a lot of progression again. My node mets are twice the size that they have ever been. My bone mets are holding pretty steady - active but not really growing much, and not causing too much pain right now. I start back on chemo Friday. I asked my onc for his opinion since I've had so much spread. He said that I am still in good shape, especially if I respond to the same chemo combo as well this time. And even if I don't, there are other chemos I have not tried. I have not had Stivarga (regorafenib) and have not had Erbitux (my KRAS mutation is codon G13D, so it may work for me).

If I am reading correctly, you have only had 7 tx, and they have been FOLFOX. Rather than telling you that you are nearing the end, if you are having progression, your oncologist should be changing your chemo. There are many options other than FOLFOX. Each patient is different, and each cancer is different (even if they are both rectal or both colon, no two are alike). Unfortunately we don't know in advance which ones will or will not work for us - or how long they will work once we start them.

I would STRONGLY urge you to get a second opinion. And hopefully it will be from an oncologist that wants to fight a bit harder for you if that is what you want. I was 47 at dx and now I am 51. I know that the chances are I will die from this disease - probably within 1-5 years. But as long as I can keep getting through treatments and getting breaks where I have quality of life, I will keep pushing to stay here on earth. Sure, it could happen that no chemo really works well for you and that you don't have radiation or surgical options. But until you've explored ALL the options, do not give up if you do not want to.

[Kathryn in MN]

Well. Just another day in the life of a stage four. Saw my onc today for results and I have 3 glowing nodes. One is precisely where it was the first and second time prior to chemos. He noticed that it had never been biopsied so now I am waiting to hear about biopsy appointment. He seems to think it might be....slim chance...a. inflammatory process. If it comes back cancer I wiil be going to xeloda with avastin. Probably the worst news was that my sweet once is leaving to do genome research. Anyway feeling kindof deflated at this point.
Pollo 65

Hoping for inflammatory! And I'm hanging on to those thoughts in the hope for the best mindset.

In the case of the prepare for the worst mindset, if it is the same nodes coming back each time and the biopsy is malignant, have you asked about cryoablation, RFA or radiation to those nodes? I think it made a big difference when I got radiation to my original stubborn 3 nodes that kept coming back. Other nodes were beat down by chemo and didn't return but those always did. Radiation obliterated them and got me a very nice long treatment break. There are lots of thoughts out there, but most of my team agrees that if we can keep the tumor load low, that is best and we will live the longest. So if these are malignant, hit 'em hard and beat 'em back down again. And consider Zaltrap intsead of Avastin... I know of two others that have had incredible response like me now - with Zaltrap working way better than Avastin.

[Kathryn in MN]

I'm so glad this thread was started. So many of the things that have been said here and on another thread were things I've thought but figured it was just me.

On second round of what I call Iritux and already my hands and fingers have thinned to the point I can't wash dishes, the turn switches on lamps hurt and so on. And my mouth is killing me! Praise the Lord I have the Magic Mouthwash as well as the salt/soda mouth rinse I make up every other day. Still, it's literally a pain. AND, my bowels aren't reacting the same from week to week to the chemo so I never know if I'm gonna be stopped up or running to the can.

I get a scan next week to see if the tumor has become resistant to the Erbi. If it has, then I go to Vectibix with the Irinotecan.

Please, please share the good stuff. I need to read the bad stuff too. That's one of the things I've loved about this board. You get both.

God bless ~
Guinevere

Ouch - sounds painful. Can you wear gloves to help with turning switches and so forth? Would it help at all? Have someone else do the dishes!

[Kathryn in MN]

The stage IV or recurrent has been covered well. I am one of those "unknown" at dx. That is why the m "X" in my signature at dx. I had spots on my liver light up, and three upper abdominal lymph nodes, on a PET done AFTER resection surgery. I had two biopsies done on my liver (benign). So the spots that lit up could have been surgical recovery. And the nodes were right near where the colon was pieced back together. So they could have been from surgery trauma. As it turned out the liver spots were from the healing after biopsy. But the nodes were malignant. Through my first 12 tx of FOLFOX we hoped I was stage IIIc and when I finished and had a clear scan, we considered IIIc and cured. But 3 months later my CEA was up and a PET showed those same 3 nodes and biopsy confirmed colon cancer. So I was corrected to stage IV all along...

[janeandrea]

Dear Doug -

I am going to add my voice to those crying "don't give up yet!" I have Stage IV rectal cancer, many mets in both lobes of my lungs. I was diagnosed DECEMBER 20, 2007! When I was first diagnosed, my docs thought I was Stage IIIc. It wasn't until I finished chemo (FOLFOX) and the lung buggers started growing that they discovered I'd been Stage IV all along (very short version of a very long story). Here is the kicker: I SHOULD HAVE BEEN DEAD ALREADY by the time they realized those lung spots were indeed cancer. My doc, who never likes to give out numbers in stats or life expectancy, told me that if they'd known I was Stage IV and I'd pushed him back in '07, he would have given me somewhere between 6 and 18 months. That was 4 years ago.

Get a 2nd opinion. Unless there are more details you haven't shared yet, I am shocked that a doctor gives up after a SHORT run of one type of chemo. I had 12 rounds of FOLFOX originally, not sure why you only got 7? I think protocol is at least 8, and I think usually 10 - 12 (sorry, I've lived so much longer than they thought that I've actually forgotten!).

Peace to you, friend.

Jane

[Guinevere]

Well. Just another day in the life of a stage four. Saw my onc today for results and I have 3 glowing nodes. One is precisely where it was the first and second time prior to chemos. He noticed that it had never been biopsied so now I am waiting to hear about biopsy appointment. He seems to think it might be....slim chance...a. inflammatory process. If it comes back cancer I wiil be going to xeloda with avastin. Probably the worst news was that my sweet once is leaving to do genome research. Anyway feeling kindof deflated at this point.
Pollo 65

Well, crap, Pollo!! I'm just so sorry and hope that it is an inflammation. I would be feeling deflated as well. Now you have to go onc shopping. I'll be praying the Lord guides you to the onc that will be perfect for you.

God bless ~
Guinevere

[Guinevere]

today i was told i have 6months to a year, i really don't know what to think. 53 years old and told that there wasn't much hope. i want to get every thing in order so my wife and kids don't have to much to worry about. i hope that i can take everything like a man. i cry every time i think about my kids and wife. my boy are grown men, but i still know i will miss so much.i started off with colon surgery than liver surgery and 7 treatments folfox 6 now it has moved to lymph nodes chest,under arm pits and also a spot on my liver ,lit up with the pet scan. i really feel down, don't know why i wanted to tell everyone my problems, but i just had to tell someone. going to try to enjoy the time i have left, 1:30 and can't sleep, thank you for reading this doug

Doug,
This is the perfect place to vent and share what's going with you. It's a safe place. There is hope. Even a little hope is a LOT better than no hope so you at least have something to work with. I'm sure as a 53 year old father of grown sons and a husband, you know that taking it "as a man" just means doing what needs to be done in order to have the best possible outcome and dealing with things as they are. It definitely seems, from what you've written, that that is exactly what you're doing. Crying is not only a great release for your emotions, it's good for you physically. Of course you feel down!! Even with feeling down, make yourself find the joys in everyday life. Make the memories you want your family to have while you can. Is it easy? Nope! But we haven't gotten 53 years down the road (I'll be 53 in August) without learning we are stronger than we ever thought we could be even when we're feeling weaker and more frightened than we ever thought would be possible.

God bless ~
Guinevere