stage 4 question

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Any stage 4's out there that have been declared NED? I have multiples in lung and liver?

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  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    I am NED at the moment...

    though I only had one liver met, so not quite in the same state as you are. 

    You will find others here who are NED with multiply mets. 

    In fact, if you go to this link  http://csn.cancer.org/node/290094  and read, you will find some who don't post here often. Especially read the post by plucky (page 2) who has had multiple mets to liver and lungs, and is currently 3 years NED. 

    Keep the faith. You are doing well. 

    Sue - Trubrit

  • Easyflip
    Easyflip Member Posts: 588 Member
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    Stage IV

    declared NED ( two and sort of 3) times, let's hope 3 times a charm! Good luck, it's possible!

    Easyflip/Richard

  • Steve444
    Steve444 Member Posts: 105 Member
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    NED

    I'm currently NED from stage iv with mets to liver.  Just chemo, no surgery as my liver was 90% tumors.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
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    I was stage 4

    and have been NED for over three years.  Because I have an unusual tumor type (carcinosarcoma) that grows faster than the one more commonly seen in colon cancer I have been declared cured (knock on wood about a million times).

    However, I never had involvement in other major organs...all my spread was more localized, with a recurrence in the colon, and mets to the small intestine, utererus, peritoneum, and rectum.  Chemo didn't work, but surgery was able to remove everything.  So stage 4, but with an asterisk next to it, I guess.

    Still, I was not expected to make it past two years, and here I am.  You just never know.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    Trubrit said:

    I am NED at the moment...

    though I only had one liver met, so not quite in the same state as you are. 

    You will find others here who are NED with multiply mets. 

    In fact, if you go to this link  http://csn.cancer.org/node/290094  and read, you will find some who don't post here often. Especially read the post by plucky (page 2) who has had multiple mets to liver and lungs, and is currently 3 years NED. 

    Keep the faith. You are doing well. 

    Sue - Trubrit

    I am confused...

    I thought NED is no evidence of disease. How can someone be NED but still have mets to liver and lungs? 

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    I am confused...

    I thought NED is no evidence of disease. How can someone be NED but still have mets to liver and lungs? 

    Sorry!

    I did not word my post very well at all. 

    I should have said that their are many here who have had (past tense) many mets, and are at the moment NED. 

    I will try to be more careful with my wording in future. 

    Sue - Trubrit

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    Trubrit said:

    Sorry!

    I did not word my post very well at all. 

    I should have said that their are many here who have had (past tense) many mets, and are at the moment NED. 

    I will try to be more careful with my wording in future. 

    Sue - Trubrit

    Thanks Sue!

    I thought there was something I just wasn't getting. Thanks for clearing that up. I hope you're doing well.

    Lin

  • ron50
    ron50 Member Posts: 1,723 Member
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    My friend from New Zealand

        Foxy(Virginia) at diagnoses had cancer in the colon and a met in her liver. She had colon surgery and a wedge resection of her liver. She had the same chemo as me(no longer used) and is cancer free for over twenty years. Go FOXY!

  • impactzone
    impactzone Member Posts: 551 Member
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    Stage 4 at dx and that was 8

    Stage 4 at dx and that was 8 years ago. I am NED for 3 years now but you never know.  

    All my best

    CHip

  • Friendinpenn
    Friendinpenn Member Posts: 70
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    ron50 said:

    My friend from New Zealand

        Foxy(Virginia) at diagnoses had cancer in the colon and a met in her liver. She had colon surgery and a wedge resection of her liver. She had the same chemo as me(no longer used) and is cancer free for over twenty years. Go FOXY!

    ron50....I thank you for that comment!

    Just got a chest/abdominal/pelvis scan review....all OK   this is 5 years now!    I Always like seeing you positive messages....I Thank You....

     

  • Phil64
    Phil64 Member Posts: 838 Member
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    Seven Surgeries to NED

     

    I am currently NED from both Tedticular and Colon cancer. After seven surgeries and 29 chemo treatments., 22 radiation treatments.  All this over 2 years and 10 months. I have had two colon resectiond, one lung resection, three liver resections, and one orchiectomy (testical removed for testicular cancer). I celebrated my 51 birthday in January and I'm looking forward to two daughters weddings over the next year. 

    Wishing and praying for the best, for all of us!

    Phil

  • nsichler
    nsichler Member Posts: 18
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    Multiple mets

    Ned you had 90% of your liver with tumors? How many rounds of Chemo before you were NED? Did u have oxaliplatin thru it all?

  • nsichler
    nsichler Member Posts: 18
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    Steve444 said:

    NED

    I'm currently NED from stage iv with mets to liver.  Just chemo, no surgery as my liver was 90% tumors.

    Multiple

    Ned you are NED after 90% of liver mets. How many rounds of Chemo did u have? Were u on oxaliplatin thru it all?

  • Steve444
    Steve444 Member Posts: 105 Member
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    nsichler said:

    Multiple

    Ned you are NED after 90% of liver mets. How many rounds of Chemo did u have? Were u on oxaliplatin thru it all?

    Old status

    I was NED when I replied in Feb, but now have 12 or so tumors back in my liver.  To answer your question, I was on chemo for 14 rounds (stopped by choice, onc wanted me to continue) and then remained on Avastin alone for another 7 rounds until my BP got out of control (6 weeks ago) and stayed off in prep for SIRT next week.  I don't recall when Ox was stopped, but think it was probably around session 10 or so (when neuropathy moved from feet to hands and stuttering/mental fog got real bad).  Looking back at the scans, I think I exaggerated with the 90% number, it was probably more like 60%, the largest being 9cm and too many for the radiologist to count overall.  Anyway, Folfox (I was also using cannabis oil, cut out sugar, etc...) knocked out everything in my liver, lymph nodes and rectum (Also had a 9cm tumor there).  Activity was found again in March after being NED for 6 months, my CEA is now 3.4, up from 1.2 and I'm two groin pokes into the six for the radiation sphere treatment on my liver.

  • sammer4u
    sammer4u Member Posts: 37
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    Stage IV and NED for 3 years

    Stage IV and NED for 3 years this coming Sunday!  And I am not on any medication.  All I do is my follow up CT, Lab work, and Oncology visits at 6 month intervals now!

  • SilentRenegade
    SilentRenegade Member Posts: 123
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    This thread is sooo wonderful

    This thread is sooo wonderful to read. 

    My dad has Stage IV with mets to the lungs and liver. He had two large tumors (one in colon one in rectum) that disappeared with just chemo and radiation. The liver mets disappeared after his first round of chemo - they are still working on the lungs and a spot reappeared in the liver, but he is consistently gaining weight on chemo (After being down to 130lbs at 6ft - he's back up to 150 and plans on being 160 before his next appointment... his heaviest in his life was 175) and has a lot of energy - a huge improvement from last summer and the summer before.

    There seriously is hope - you really have to believe in yourself, honestly... I swear half of my dad's success has been the attitude that he's not going to die from cancer. 

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    This thread is sooo wonderful

    This thread is sooo wonderful to read. 

    My dad has Stage IV with mets to the lungs and liver. He had two large tumors (one in colon one in rectum) that disappeared with just chemo and radiation. The liver mets disappeared after his first round of chemo - they are still working on the lungs and a spot reappeared in the liver, but he is consistently gaining weight on chemo (After being down to 130lbs at 6ft - he's back up to 150 and plans on being 160 before his next appointment... his heaviest in his life was 175) and has a lot of energy - a huge improvement from last summer and the summer before.

    There seriously is hope - you really have to believe in yourself, honestly... I swear half of my dad's success has been the attitude that he's not going to die from cancer. 

    Attitude

    Has a lot to do with improvement (IMHO). My brother is still going strong and insists cancer is not going to kick his butt. I believe him! He is stage 4 with several mets to the lung and 1 to the liver. His heart weakened (could be due to chemo for NHL he had in 2000), so his chemo dose was lowered. He has been fighting this since 2011.

    As you will see, there are many on here who have been around for a long time who are stage 4, but sometimes we do lose some of our members. I like to look at the glass as half full, so I like to hear all the stories of people who are living with stage 4 cancer for years or have become NED! I think many who have become NED had some sort of surgery.

    Lin

  • BillO60
    BillO60 Member Posts: 72
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    Great Positvie Thread - Needed that kind of boost today

    I haven't been on here for awhile. Was diagnosed with CRC in March after an endoscopy/colonoscopy showed a 10 cm circumferential mass about 5 cm in from the anal verge. 

    Biopsy came back as adenocarcinoma.  A CT scan, an MRI, and then a PET scan showed some sub-centimeter "cysts" in the liver but both the surgeon and oncologist used the word inconclusive and planned to do a biopsy if possible during surgery. I went through 28 days of radiation for the CRC tumor and 42 days of twice a day oral doses of Capcetibine.

    Aside from making many, many trips to the bathroom during and after the treatment I tolerated it reasonably well. Lots of fatigue which I attribute to getting 1 or 2 hours of sleep in a row each night because of the 8+ urgent trips to the bathroom that kept waking me up. Even taking max doses of Lomotil and Immodium around the clock did nothing to slow it down. It's been about 10 weeks and things are much improved compared to when I was in treatment although I'm still fatigued and have to be close to a bathroom during the day.

    Although the rad/chemo was meant to reduce the tumor size I'm not convinced that it had any affect. I've been scheduled for surgery mid-August and was introduced to a 2nd surgeon who ordered a follow-up MRI scan of the pelivis and one of the liver. I had not seen the original test results regarding the liver and might have been defining the word "inconclusive" too optimistically. This last MRI was no different from the first on either the CRC or the liver.

    I got a copy of the results that showed a 1 CM lesion in segment 7 and several smaller lesions in both Segments 5 and 7 which "possibly represent small metastases". So, although mentally geared up to deal with the surgery and chemo for the CRC I hadn't been mentally prepared to deal with the strong likelyhood of a Stage IV diagnosis. 

    It's taken me a few days of researching and getting my head wrapped around this and after reading so much doom and gloom on the web it's good to find more optimistic and postive results in here.

    Thank you all for your postive stories. It helps keep us newbies going.

    Bill

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    BillO60 said:

    Great Positvie Thread - Needed that kind of boost today

    I haven't been on here for awhile. Was diagnosed with CRC in March after an endoscopy/colonoscopy showed a 10 cm circumferential mass about 5 cm in from the anal verge. 

    Biopsy came back as adenocarcinoma.  A CT scan, an MRI, and then a PET scan showed some sub-centimeter "cysts" in the liver but both the surgeon and oncologist used the word inconclusive and planned to do a biopsy if possible during surgery. I went through 28 days of radiation for the CRC tumor and 42 days of twice a day oral doses of Capcetibine.

    Aside from making many, many trips to the bathroom during and after the treatment I tolerated it reasonably well. Lots of fatigue which I attribute to getting 1 or 2 hours of sleep in a row each night because of the 8+ urgent trips to the bathroom that kept waking me up. Even taking max doses of Lomotil and Immodium around the clock did nothing to slow it down. It's been about 10 weeks and things are much improved compared to when I was in treatment although I'm still fatigued and have to be close to a bathroom during the day.

    Although the rad/chemo was meant to reduce the tumor size I'm not convinced that it had any affect. I've been scheduled for surgery mid-August and was introduced to a 2nd surgeon who ordered a follow-up MRI scan of the pelivis and one of the liver. I had not seen the original test results regarding the liver and might have been defining the word "inconclusive" too optimistically. This last MRI was no different from the first on either the CRC or the liver.

    I got a copy of the results that showed a 1 CM lesion in segment 7 and several smaller lesions in both Segments 5 and 7 which "possibly represent small metastases". So, although mentally geared up to deal with the surgery and chemo for the CRC I hadn't been mentally prepared to deal with the strong likelyhood of a Stage IV diagnosis. 

    It's taken me a few days of researching and getting my head wrapped around this and after reading so much doom and gloom on the web it's good to find more optimistic and postive results in here.

    Thank you all for your postive stories. It helps keep us newbies going.

    Bill

    Hello Bill

    So good to see you back, and get an update. 

    I do hope that all goes well when you have your surgery. Keep us informed on how its going. 

    I also had an inconclusive spot on my liver, when I started this journey. It did turn out to be a tumour, which I had ablated 13 months ago. I have been doing well, ever since. CT Scan and blood work coming up on Monday, but I don't anticipate anything bad. 

    There are some great success stories on here. Pop back often, especially when you're feeling overwhelmed. 

    Sue - Trubrit

  • lunabella3
    lunabella3 Member Posts: 1
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    newbie- CRC

    i have just joined looking to connect with others who are going through the same journey.  I am 46 and am waiting to have radiation next week then surgery to remove colon tumor in mid-September.  I have undergone chemo with a 55% reduction in tumor.  I also have a nodule on each lung which we will deal with after colon issue addressed.  I am fighting hard but have to admit I am tired and a little overwhelmed by the treatments ahead.  Any tips for a newbie?