Stage IV still in treatment

Momto3boys

PhillieG said:

Xeloda

It is important to keep in mind that everyone is different. Hopefully you will set a new standard for your onc! I actually haven't had a break from Xeloda in the 4 years that I've been on it. I'm taking 2000mg twice a day for 7 days, then 7 days off. I had started with 2250mg and was having some issues with my hands and feet. The slight reduction in the dosage seems to have fixed that. Sometimes I do get some soreness of my hands and feet but it's tolerable. I've also had a few times when I don't take the meds on the last day.

Yes, I understand.  My onc gave me a few options...go to avastin only, switch up the frequency of dose of xeloda etc,  I like the one week on/one week off.  I'm also doin 2000mg twice a day....but two weeks on , one week off.  I know everyone is different, but it's good to know that xeloda seems to control the disease in the long term for some.   I'm going to wait for my next scan, and change things up if it's still clear.   Congrats and best wishes to you PhillieG

PhillieG

One of the "games" I've used to help me through all of this has been to try to think of myself as one of those who is on the side of the good stats. HeII, someone has to do it!
Best wishes to you too
PS: I'm not on this forum as much as I used to be. I'll try to visit more frequently. I'd say message me but I've been having trouble sending emails to people lately. 

NewHere

Stage IVB

Two and a half years now.  Surgery in Feb 2015, 12 Rounds of FOLFOX ended the end of Summer 2015, Surgery for Lung Met in Sept. 2016.  

Joan M

I was diagnosed at Stage IV in March 2016 and have been told surgery is not an option for me due to the number and locations of the tumors.  The colon tumor was not causing any blockage and "disappeared" - was not visible on the scans in October 2016 or January 2017. I had 8 rounds of Oxaliplatin, Leucovorin, Avastin, and 5FU.  July 2016 I went on maintainecne chemo  of Avastin infusions every 3 weeks and take 2500mg Xeloda per day for 14 days.  I had an microwave ablation on a tumor in the left lobe of my liver in January 2017 and had the Y90 radioactive beads in the right lobe in April 2017.  Still have small tumors in  my lungs, but they have all shrunk since the initial diagnosis.  

Question to Phillie:  What type of surgery did you have on your lungs? I was glad to hear that you have tolerated the Xeloda for several years. I will likely be on it for the rest of my life and have searched for info on long term use of such.  I hope your doctors practices are being replicated at other cancer centers, so there will be more stage 4 survivors who beat this cancer for 10+ years!  

PhillieG

Joan M said:

I was diagnosed at Stage IV in March 2016 and have been told surgery is not an option for me due to the number and locations of the tumors.  The colon tumor was not causing any blockage and "disappeared" - was not visible on the scans in October 2016 or January 2017. I had 8 rounds of Oxaliplatin, Leucovorin, Avastin, and 5FU.  July 2016 I went on maintainecne chemo  of Avastin infusions every 3 weeks and take 2500mg Xeloda per day for 14 days.  I had an microwave ablation on a tumor in the left lobe of my liver in January 2017 and had the Y90 radioactive beads in the right lobe in April 2017.  Still have small tumors in  my lungs, but they have all shrunk since the initial diagnosis.  

Question to Phillie:  What type of surgery did you have on your lungs? I was glad to hear that you have tolerated the Xeloda for several years. I will likely be on it for the rest of my life and have searched for info on long term use of such.  I hope your doctors practices are being replicated at other cancer centers, so there will be more stage 4 survivors who beat this cancer for 10+ years!  

Lung Ops

Hi Joan, I had 3 wedge resections in my lungs over about 3-4 years. Due to too much scar tissue, I started having RFA (radio frequency ablations) for the spots that grew in my lungs. I had about 8 of those. In April I had 1 radiation treatment (actually 3 short zaps over 1 week) but unfortunately that caused radiation induced fibrosis which has given me some breathing issues. I had to have the radiation because I had a lung tumor that was too close to an artery.

I've spoken with my Onc and unfortunately, many oncologists feel the HAI pump therapy is outdated. In her words, implanting the pump is "not rocket science". I have heard of some cancer centers poo-pooing the HAI pump. Recently, more cancer centers have been sending teams to Sloan to learn the technique. Many nurses have practiced refilling my HAI pump. I feel like a pincushion! 

To add a little more perspective on my situation, I tolerated Erbitux and Irinotecan for about 8 years. It stunk but I put up with it. After the breathing issue with my lung, I was given the choice of going back to Erbitux and Irinotecan or trying Xeloda. I'm glad I chose Xeloda 

ron50

And you don't

Look a day older phil.  Good to see you mate. For some reason I always feel that you are still out there alive and kicking whether we hear from you of not. You still remain a survivor hero to many on these boards including me. PS We are a bit woorried about John. No one has heard from him for some time and I don't think he is going too well, hope I'm wrong, Cheers Ron.

PhillieG

Thanks Ron

I'm still kickin'. You've certainly been an inspiration to me (and others) as well. After a certain point, my comments aren't relevant to those new members. We all hope that people get cured or go into remission so hearing that I've been in treatment xx years is not what they want to hear. An honesty, all I've done is follow my Onc's lead. I'm also stubborn which doesn't hurt :-)

I haven't heard from John either. The CSN email system isn't working for me lately. I'll keep trying to reach him. I hope he's ok as well

Joan M

Thank you for the response PhillieG

And I LOVE hearing updates from long term survivors on the board.  Knowing that some people have survived stage 4 colon cancer for more than 10 years and even 20 years like Ron is inspiring!  Your experience in dealing with various treatments and how to overcome side effects is very helpful.  Finding this site has given me so many answers and also allowed me to learn about treatment options and push for them to help me in my battle - such as the ablation techniques and the Y90.    

Annabelle41415

Wishing you all the Best

Can't really comment on that but wishing you the best.

Kim

phuckcancer

my husband was DX March 2016.

my husband was DX March 2016.. we (he) has had chemo consistently since April (after surgery was performed)