Stage IV still in treatment

I'm 4 months shy of the 3 year mark. I was diagnosed Stage IV 10/14, with mets to liver & lung. I've had success with several regimens of chemo, 3 surgeries & 1 ablation. Some breaks have been due to surgery (pre & post op), some have been at my request. Longest break was 6 months. Breaks are sometimes needed as a rest physically, but also mentally. In my case, every time I've taken a break, my CEA increases. I'm still very mobile and do not have the appearance of someone who is sick. Fatigue is my worst side effect, but I'm trying to be more active in an effort to keep moving & hopefully increase my stamina.

Momto3boys - Thank you so much for responding and seeing that you seem to have had a good response to your treatment.  Were there any chemo cocktails that you found particularly reponsive to reducing the tumours?  I know we are all different in our responses to chemo, but it is good to know of options particularly if our tumours mutate or we have further mets to other areas.  Continued best wishes.

Originally dx'd stage IV in June 2007, had surgery, hysterectomy and chemo.  HIPEC surgery, appendix and gall bladder removed in 2009 and chemobefore and after surgery.  Third tumor removal in Oct 2012, chemo before not after.  Had a colostomy in 2014 during the fourth surgery, it was permanent due to blood loss during surgery.  Last chemo was February 14, 2014, before surgery no chemo after.  Fifth surgery in April 2017, no chemo before or after. My onc and I have decided to hold off on chemo until I know I have something to worry about.  Post-surgery chemo does not improve my chances of fending off a reurrence. Chemo has helped to keep the tumors from growing while waiting for surgery.

Three or four years ago I was dx'd with chronic myelogenous leukemia (CML), but am currently in remission taking a pill daily.  I could stand to exercise more, but otherwise am in great shape.  Good luck to you, Traci

dancer2 said:

To what extent do they cut

To what extent do they cut the dosages of the maintenance chemo they will using...this is what my onc wants to do, but i want a resection on the liver for two small mets, the lungs have had tiny spots all along with no one making a move to get any testing done so not the surgeon probably will not do the surgery til he knows what is the lungs.......four spots in each ranging from 6mm to 2mm.  I just don't want to feel like this anymore and my oncologist explained it a little by telling me they lower the dosage, then try to eliminage drugs and that most people don't feel like they are on chemo???? Anyone? I have been at this since 11/15 and only since the oncologist added erbitux has any shrinking or containing been going on and that was just last march that was added.....rough stuff...........but like most of you, i want it all cut out......would love some feedback.

The need is to find off label drugs and supplements that can help your maintenance chemo perform better than a higher chemo dose alone, and without the nasty side effects for a higher quality of life.   

Different cell types respond to different additives and they often can be combined with oral chemo.  Based on changes and responses  in her cancer markers,  my wife appears to have several cancer cell types that respond to different add-ons that make the 5FU work for all of them.  You would need an integrative MD, ND or both to help you.  We simply have a prescription for the oral chemo, a stockpile, and don't bother "regular oncologists" much any more.

I was diagnosed Stage 4 in 5/05 - liver met - did 6 rounds of Xeloda/oxaliplatin/Avastin - clean scan.  Many tests/scans etc.  Lung recurrence with met removed in mid 2009.  Two years of Avastin (plus 6 rounds of Xeloda).  Ned since.

So I am 12+ years out from stage 4 diagnosis - who knows what happens next, but so far so good!

Hi Momto3boys, I was diagnosed way back in Feb of 2004 with stage IV colon cancer. I've been in treatment ever since. I had the usual surgeries with the exception of having an HAI pump installed by Dr. Kemeny* at MSKCC. I have taken a few short breaks over the years and 1 (almost) year long break back in April 2013 when I developed radiation-induced fibrosis after a lung treatment.

Since then I started with Xeloda and Avastin and have been doing that ever since. I've done pulmonary rehab and things are ok-ish. I don't need supplemental oxygen all of the time, I only need it when I'm exercising or doing yard work. Even though I may B&Moan at times overall I have no major complaints. I know I'm fortunate to have gotten good treatment and I responded well to it.

* Dr. Kemeny's patients have a 65% 10 yr survival rate so I'm not unusual...in that way. I'm very unusual in other ways ;-)
-p

Momto3boys said:

Hi PhillieG

I am so happy to read your post.  It helps me understand is in the realm of possibilities.  I recently asked my Onc the longest one of his stage IV patients-still in treatment--had made it.  With all the patients he has seen in his long career I was expecting an answer like 20 or 30 years.  He told me 10 years.  It took the wind out of my sails.  I'm at 7....I know everyone is different....but it nice to see a long term survivor still tolerating xeloda and keeping it under control.  I hope I follow in your footsteps.. One question for you.  When you take breaks from the xeloda, do you wait for something to show up on a scan and then start in again....or do you just take a month or two and then go on, even when you are NED.   -thx for responding

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.