The Colon Club

Still here:)
N

Ehut wrote:Another long term (6+ years) stage IV survivor here. It sounds like the disease in the liver is limited in your case, so hopefully resectable. If it's not resectable, I would try to find a center that offers HAI to hopefully get it to that state.

So as has been true of every step along the way so far, the radiologist punted bad news to the onc. It turns out that I have 6 liver mets; 3 on right lobe, 3 on left. I got redirected to a surgical oncologist who is getting an additional MRI to use as a baseline for a future resection and/or ablation after chemo.

Hi.

Don't despair. I know it's scary...been there. 8.5 years later I am still here. I am in and out of NED. My journey below. My life has not changed much except for treatment every three weeks. I'm still living, working and managing my disease.

I wish you and your hubby the best.

Sue

Mattie, what are your thoughts on the FOLFOX vs. Xeloda. At my last appointment, my onc offered both as viable options but that FOLFOX had more data behind it overall because it's been around longer. He also implied that Xeloda might have more side effects for caucasians (?). With that data I went with option #1, but now I'm wondering. Perhaps this is better as a separate post?

Spazzyjanet wrote:

Ehut wrote:Another long term (6+ years) stage IV survivor here. It sounds like the disease in the liver is limited in your case, so hopefully resectable. If it's not resectable, I would try to find a center that offers HAI to hopefully get it to that state.

So as has been true of every step along the way so far, the radiologist punted bad news to the onc. It turns out that I have 6 liver mets; 3 on right lobe, 3 on left. I got redirected to a surgical oncologist who is getting an additional MRI to use as a baseline for a future resection and/or ablation after chemo.

In my case, IIRC 4 tumors were in the left lobe, 2 in the right. They removed the entire left lobe and did "wedge" resections on the right. Find a good surgeon who may be able to be "safely aggressive".

Get to resection then you are going for “cure.” I know it’s scary. I’m still scared. I went from stage 3c to 4 when one met invaded my liver. I had it resected immediately and no chemo needed for now. Life is relatively normal and everyday I am waiting for the show to drop. But I also think many people tests this like a chronic illness not a terminal disease. Get in the game and do whatever it takes to be here. We are with you!

Someone has to beat the odds, why not you? Glad to see many other survivors piping in. I was dx'd Stage IV with over half my liver cancerous at age 39 in 2010. Thanks to great response to chemo, HAI at Sloan (which probably saved my life), some other things I tried (especially exercise!), good luck and divine grace, I am still here and officially NED 8 years later. The best thing you can do is to educate yourself on your options...and always get a second opinion (or a third).

Sorry for the short response, but best wishes in facing and overcoming the challenges ahead.
-Chip

I am still clear as well. 3.5 years after my diagnosis in June 2015. I had 10+ mets in my liver. I got FOLFIRINOX as first line chemo, than HAI pump. Last surgery in May 2016. Off treatment.
I wish you best of luck!

Mine progressed to Stage 4 with a lung met. I never did let them do a biopsy. I scheduled the VAT surgery and told them to biopsy it once they got it out. Yup, it was rectal cancer in my lung. So, then 12 rounds of Folfox. My July PET was clear. I stopped chemo 6 months ago and have another PET on Monday. If Monday's scan continues to be stable, then my next scan will be in 6 months.

Yes! My husband Jim had been cancer free since 2012. Positive attitude, good doctors and a strong support system helped him (us).
Best wishes to you.

So good to see all the old names doing so well .
Things are definitely changing .
Stu

Hello,
I’m not usually on the board a lot anymore, but I wanted to chime in because I also thought I was stage III, after I was told the spot on my liver was most likely a hemangioma. I remember finding out after the biopsy that it was cancer, and feeling hopeless and looking for long term survivors like you are now. I’m now one of those survivors, free of disease for a number of years.
I was a candidate for a liver resection immediately, five weeks after I had my colon resection. I did FOLFOX after that, and then I did ADAPT for various reasons. It’s been almost 5 1/2 years since my diagnosis.
I’m sorry you and your family are going through this. Feel free to message me if you’d like to chat, and best of luck to you! There are so many long term survivors. I second the HAI recommendation if you are not currently resectable.

Best,
Donna

Spazzyjanet wrote:Mattie, what are your thoughts on the FOLFOX vs. Xeloda. At my last appointment, my onc offered both as viable options but that FOLFOX had more data behind it overall because it's been around longer. He also implied that Xeloda might have more side effects for caucasians (?). With that data I went with option #1, but now I'm wondering. Perhaps this is better as a separate post?

I have heard they are about the same. Xeloda is alot more convenient, since it is a pill form. I went with the Folfox standard when I was first dx, and then when it came back, I went with Xeloda and it put it back in remission. Some of this is trial and error.

If I were you I would have selected the same, option 1 first, and use xeloda later.

hugs

Thanks again to everyone chiming in with some hope.

The oncological surgeon that I spoke with this week at our local cancer center was the first doctor that I've seen so far that gave me confidence that he knew his stuff, actually read all of my information and wasn't punting bad news.

He wants to do 3 months chemo, then a scan, and then possibly going in and resecting and/or ablating the liver (putting my colon back together as well.) He has ordered an MRI as a baseline so that if any mets become invisable later, he can still include those areas in resections or ablations. This is because they might likely still be there and the goal is to prevent recurrence.

Yesterday I read that for stage 4 patients with successful resections the 5- year survival rate goes up to 40%. Let's hope that he can do that. Grabbing onto allof the hope that I can.

Spazzyjanet,

Good to hear that he is having an MRI. I have to advocate for my husband to get them instead of CTs as his CTs never picked up on his liver tumor. (I honestly don't know why the oncologist had ordered a CT in May when he originally said that surveillance was going to be with MRIs.) The gold standard is abdominal MRI for liver mets and Chest CTs to watch out for lung mets. That is what we are having done this fall.

With the best care you can possibly get and super strong advocacy, that 40% can get bumped to 80%. I'm definitely not the most well liked patients' spouse by his doctors, but I'm always making sure that my husband is getting the best treatment the medical system can provide (within our means).