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thot it was just colon/liver but now lungs..??

clier
Posts: 29
Joined: Feb 2009

Hi everyone,

I was dx with Stage IV Colon C 3/09. Had large tumor removed from colon, then radiospheres & 6 months of Folfox w/ Avastin, ending last Sept. Clear PT in Oct, but developed ascites (collecting fluid in abdomen). Onc said I needed to do liver biopsy, which I did 10/09 & it showed new activity in liver. Did another round of radiospheres & started Folfuri w/o Erbitux Jan 5. Had a lot of new pain last week on left side of abdomen, so went to family doc, did xrays & a CT, got call from family doc last night saying there were now mets in my lungs. Haven't met w/ onc yet to get the next stage of the plan. Who out there has liver & lung mets and what the hell have you done? My wife & I are alternatively dumbstruck, angry & frightened. We are faithful people & have been in this fight with both feet and a raft of friends & family, but I thought I was getting better...

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

I was dx'd 9/08 with mets to liver and possible lungs. It was later confirmed that it had definitely in both lungs. I'm still here fighting with a good prognosis. I've had a liver resection (3 tumors removed) a rectal resection and a left lung wedge resection (4 removed) and getting ready to go in for an open chest procedure to remove remaining lung nodules (about 8 or 9). I've been on chemo the entire time. There is always hope! I'll be praying for you.

-Sheri

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

I was diagnosed 8/07, progressed on folfox with mets in the liver. We have been watching 2 spots in the lungs for the last 2 1/2 yrs that were too small to know if they were mets. They recently starting growing - lung mets. I have a 6mm spot in the lower left lung and an 8mm in the upper right lung. I start radiation next month.

Don't freak out now. There is hope and many treatments besides chemo to get you there. Stay the course and let us know what you find out from your onc.

Outwit. Outlast. Outplay.

Kimby, the 'soul' survivor

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

You and your wife are 'faithful people'. I will most gladly add you to my list of those who want prayer, if that's okay with you.

In His love,
Diane

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I know this is a major blow to both you and your wife. I'll be praying that the news will be better soon.

*hugs*
Gail

impactzone's picture
impactzone
Posts: 534
Joined: Aug 2006

dx 9/06 stage 4 with live mets. Had surgery for liver and colon, chemo then 1 year later had lung mets show up. I have had 2 wedge resections on both lungs, I am sorry you have to go through this as well. Tlk to a major cancer center and see if surgery can help.
Best

Chip

linandtom
Posts: 67
Joined: Dec 2009

Sept 06!!.....very encouraging!! A post like yours gives us all hope. Thanks for posting Chip - I certainly needed this today.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I'm sorry to hear of your fight with cancer. Being at Stage IV it is very common to have liver and lung mets. That's part of what the staging represents, movement of the cancer to other organs. I will say that I am a bit surprised that your oncologist didn't see this coming since it's part the natural progression. I am at stage IV too and my mets went to my liver and then lungs and this was clear from the get-go. I have had 3 rather major lung operations *wedge resections) and two RFA (radio frequesny ablations) procedures. That is where thye stick a needle into the tumor and heat it and fry it. I know we are all different. So, yes, I have lung mets now and I am getting Erbitux and CPT11 (Irricotican (sp?)) and am having good results with that protocol. You may be faithful people but I do not think I would have much faith (or confidence) in that oncologist. Just my opinion but I think I would get another opinion and possibly another oncologist.
Good luck
-phil

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

My husband is also Stage IV, with mets to liver and lungs, you can read our bio. Diagnosed end of 3/09, surgery for colon resection 4/2 and then on to chemo one month later. Once George completed the whole Folfox/Avastin regimen he went on to what I refer to as chemo light, 5FU, Leucovorin weekly adding Avastin every other week. He has never been off of chemo except for a 2 week break at Christmas. We have not had any surgical procedure for the liver or lung. When you say radiospheres are you referring to either SirSphires or Theraspheres? You are the first I have heard of that got the spheres right out of the gate. We have not had to deal with ascites. Was the ascites just fluid or were there cancer cells in the ascites? You might want to get a second opinion with the progression from a major cancer center if that is possible. Tina

JR's picture
JR
Posts: 140
Joined: May 2009

I to am stage 4 with mets to liver and both lungs, dx 11/08, resection surgery 11/08. Told by my first onc that with proper treatment I could last 5 years. Went through 12 rounds of folfox w/avastin then found a new onc. I beleive that you have to be very carefull where you get treatment. Cancer Centers tend to make around 90% of their profit from administering chemo. So, they would like to keep you on chemo for as long as possible. I think they are more interested in treatment than otherwise. I now have a team of Dr's. from the Huntsman Cancer Institute in SLC, Utah treating me. I'm very happy with their whole approach to treating cancer. It's alot more than just giving me chemo. So, my suggestion would be to find a new onc at a cancer research hospital. Best of luck.

John

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

Was dx'd Aug. 2007 as stage IV w/ numerous liver and lung mets. Did chemo- Folfox w/Avastin, had liver resection May 2008. Not a candidate for lung surgery, RFA, or cyberknife- way too many lung nodules all over lungs & too small at this point.
Did Folfiri w/Avastin two different times following recurrences two years in a row.
Am still taking treatment & may need to look into some other kind of treatment or clinical trial. My liver has responded well to chemo, but the lung nodules have been more stubborn. Maybe if they grow a little and get over a centimeter, then I might be a candidate for RFA or cyberknife in the lungs.

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

I had 2 PETs in the last year where they think they saw something. One said possible activity in the colon and the other said possible activity in the left lung.

They were both proven wrong. Both were done by the same doctor. I know I had a cold when he said it was the lung, and I did coughed during the scan.

I have come to think reading these scans is an art not a science.

Stay positive

Brenda3.16
Posts: 211
Joined: May 2009

Hi. I was DX 3/09 with stage 4 CC with mets to the liver and lungs. I did folfox, then Xeloda which I am currently on. Next week I am adding avastin every other week. I had good response to folfox. Liver mets shrank. I am still not considered a surgery candidate due to lung mets.

I feel really good. I am a teacher and work full time. I still do pretty much everything i always did. I try to stay busy and positive. Most of the time I am able to do this.

This board has been a great support to me.

Brenda

clier
Posts: 29
Joined: Feb 2009

Thanks everyone for your replies. For those of you adding me to your prayer lists, do it! My wife & I started a Christian school 20 years ago & still run it - great ministry to families & children. We have a Vietnamese Christian friend who reminds us, after a very difficult life, that 'God's ways are higher than our ways'. So true.

Met w/ my onc's partner today & he reminded me that CT scans don't show metabolic activity; just physical size. I'll need a PET to fully interpret these results, and I'll get one ASAP. We are considering changing onc's, even if just to this partner. We'll see.

On the practical side, I'm not sure how to use this discussion board. First, I don't know how to post a new thread, so that's why I'm just replying to my own thread right now. How do you do that? Then, I'm not sure the easiest way to find everyone's replies, other than just logging in & scrolling down until I see my own original post. Is that what you do? Facebook is so much easier!

I'm glad to know everyone's experience - very comforting for both of us. Thanks, and blessings.

sallyjoy
Posts: 102
Joined: Apr 2004

Hi, we have a very similar situation. My husband was dx in 2/2004 with 1 liver met. Colon and liver resections as well as FOLFOX/avastin during 2004. recurrance to liver, 1 met, resected again in 2007... now multiple 10+ mets in both lungs. onc. forgot to give us results to a scan last year (thats right i said FORGOT!!!) ct had shown 3 lesions and noone told us! went a whole year until pain in side caused alarm and new scans were ordered which showded all these mets in lungs. Onc. "had no explanation" on why he overlooked scan results for a whole freaking year!!! anyway we fired him got several more opinions and they all said same thing... surgery not an option... hubby currently doing camptosar and erbitux every other week started in Jan 2010... have CT/PET scan Mar 30 to see if its working..hubby is exhausted fron the chemo and is considering quitting it all no matter what the scans show... he may be finally willing to try some juicing and natural alternative treatments... we hate to think of doing nothing but the chemo is so dang toxic... we are very intersted in your situation and the replies you get... we'll be watching for responces as well... wishing you the best...

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