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Stage IV still in treatment

Momto3boys
Posts: 16
Joined: Dec 2010

Hi all,

I'm curious to find hear about stage IV survivors---still in treatment--- and how long you have been fighting the beast?  Have you been doing treatment the whole time?  Have you had breaks?  

kyolcu
Posts: 33
Joined: Jun 2017

I have been on Stage 4 treatment for 17 months taking chemo every 2 weeks. I was on maintenance chemo for about a year. I was taking break(skipping 1 chemo after 4-5 chemo cycle). So far so good.

jri_in_wnc
Posts: 6
Joined: Sep 2015

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
Posts: 16
Joined: Dec 2010

Hi,  Thanks for your history.  I was dx in Apri 2010.  Starting my 8th year.  I am still doing pretty well.   I am currently on xeloda and avastin.  I had 4-5 tumors in my abdomen that have disappeared with this treatment.  Currently NED.  ...But I know they will come back.  I've been doing this regimine for over a year, and I'm tired of it.  I want a break.

Bellen
Posts: 259
Joined: Aug 2016

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.

Momto3boys
Posts: 16
Joined: Dec 2010

I have had good luck with every treatment I have done so far.  I have cut and pasted my history below.  The only chemo I have done so far is the standard folfox regime when I was first dx...and avastin xeloda now.  Hoping I can get some break and just keep on with this....although realistically they all stop working at some point.  Hoping they get something together for MSS immunology soon.  Here is my history:

4/10 debulk, DX stage IVb, 49yo

5/10-11/11 Folfox, then Xeloda/Avastin

4/13 Resect liver met + pelvic node

7/14 SBRT 15 mm Liver & node

12/14 SBRT 8 mm Liver met

3/16 4-5 pelvic nodes, Xeloda/Avastin again

10/16 fractured rib due to previous rad treatment. healing slowly

1/17  NED!  staying on Xeloda/Avastin for now

 

tanstaafl's picture
tanstaafl
Posts: 1208
Joined: Oct 2010

We've been at it over 7 years.  My wife has had pretty continuous oral chemo, IV viamin C and other alternatives including potent supplmements and generic drugs off label.   She has normal activities and good QoL, she only has some chemo effects when she skimps on supplements for a while. Her 5FU chemo doesn't work without the other stuff.

Phoenix_66's picture
Phoenix_66
Posts: 76
Joined: Jun 2017

I was originally diagnosed as Stage 3 in 2006 with a mass in my colon and two lymph nodes affected.  Six months of treatments with Folfox and started regular checkups.  In 2013 it came back in my liver and was upgraded to Stage 4.  Another six months of treatment with Folfiri and an additional 1.5 years of Avastin maintenance.  After a routine checkup in May, the cancer has returned and I begin the third battle next week.  I will have 3 months of Folfox with an yet to be determined maintenance chemo then the maintenance chemo will be taken for the rest of my life.  I feel normal and frankly am in pretty good health other than this.  So for me the clock is at 11 years battling this and still counting.

Momto3boys
Posts: 16
Joined: Dec 2010

Thank you for sharing Phoenix.  11 years is amazing.  I am hoping for a similar  outcome!

traci43's picture
traci43
Posts: 740
Joined: Jul 2007

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

Momto3boys
Posts: 16
Joined: Dec 2010

such an inspirational story.  Can relate to getting more exercise.  It's great to see the long remissions and that you are able to control your recurrences with surgery.  I have 4-5 nodes in my abdomen that are no longer active....but would rather get them out vs. tryin to continue to beat them back with chemo.

thanks for sharing.

 

Sue

 

dancer2
Posts: 47
Joined: Jul 2016

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.

tanstaafl's picture
tanstaafl
Posts: 1208
Joined: Oct 2010

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.

Woodytele
Posts: 87
Joined: Apr 2017

Dr. Is putting me on a three week schedule now, hopefully this builds up my strength, the chemo takes a lot out of you, it's a battle.  Stay positive people. 

Betsydoglover's picture
Betsydoglover
Posts: 1234
Joined: Jul 2005

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!

 

Momto3boys
Posts: 16
Joined: Dec 2010

Your story is inspirational.

blessed39's picture
blessed39
Posts: 82
Joined: Dec 2016

Dear Momto3boys, I have been in remission for several years now and I turned 77 last December. The experience

effected me so much I wrote a short story about it. If you would like to read my story just open my blog on my page.

I hope you find comfort in my story entitled "How I Beat Stage Four Colon Cancer" God bless i n your journey. blessed39

Momto3boys
Posts: 16
Joined: Dec 2010

Thanks for sharing your story

PhillieG's picture
PhillieG
Posts: 4839
Joined: May 2005

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
Posts: 16
Joined: Dec 2010

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

PhillieG's picture
PhillieG
Posts: 4839
Joined: May 2005

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.

Momto3boys
Posts: 16
Joined: Dec 2010

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's picture
PhillieG
Posts: 4839
Joined: May 2005

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's picture
NewHere
Posts: 951
Joined: Feb 2015

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
Posts: 169
Joined: Oct 2016

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's picture
PhillieG
Posts: 4839
Joined: May 2005

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's picture
ron50
Posts: 1624
Joined: Nov 2001

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's picture
PhillieG
Posts: 4839
Joined: May 2005

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
Posts: 169
Joined: Oct 2016

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's picture
Annabelle41415
Posts: 5043
Joined: Feb 2009

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

Kim

phuckcancer
Posts: 52
Joined: Apr 2016

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

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