Stage IV still in treatment

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?  

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Comments

  • kyolcu
    kyolcu Member Posts: 111
    Hi

    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
    jri_in_wnc Member Posts: 6
    Hi Momto3

    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
    Momto3boys Member Posts: 16
    Thanks

    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
    Bellen Member Posts: 281
    Momto3boys - Thank you so

    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.

  • tanstaafl
    tanstaafl Member Posts: 1,299 Member
    edited July 2017 #6
    We've been at it over 7 years

    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.

  • Momto3boys
    Momto3boys Member Posts: 16
    Bellen said:

    Momto3boys - Thank you so

    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.

    Hi Bellen

    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

     

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    edited July 2017 #8
    Still Kicking

    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.

  • traci43
    traci43 Member Posts: 773
    10 years now

    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
    Momto3boys Member Posts: 16
    traci43 said:

    10 years now

    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

    Thank you Traci

    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

     

  • Momto3boys
    Momto3boys Member Posts: 16
    edited July 2017 #11

    Still Kicking

    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.

    awesome

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

  • dancer2
    dancer2 Member Posts: 49
    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.

  • tanstaafl
    tanstaafl Member Posts: 1,299 Member
    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.

    getting extra

    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
    Woodytele Member Posts: 163
    Just finished 12 rounds

    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
    Betsydoglover Member Posts: 1,248
    Stage 4 Longevity

    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!

     

  • blessed39
    blessed39 Member Posts: 90 Member
    edited July 2017 #16
    My story of stage four

    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

  • PhillieG
    PhillieG Member Posts: 4,866
    Living with cancer

    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
    Momto3boys Member Posts: 16
    PhillieG said:

    Living with cancer

    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

    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

  • Momto3boys
    Momto3boys Member Posts: 16

    Stage 4 Longevity

    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!

     

    I've followed you since my dx

    Your story is inspirational.

  • Momto3boys
    Momto3boys Member Posts: 16
    blessed39 said:

    My story of stage four

    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

    You are blessed

    Thanks for sharing your story

  • PhillieG
    PhillieG Member Posts: 4,866

    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

    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.