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Stage IV Survivors

My husband was diagnosed Jan2010 with Stage 2A colon cancer. He was only 25. Turns out he has Lynch Syndrome with a mutated KRAS MSH2. Chances of having this mutation is less than 1% and turns out he's in that percentage.

He went through resection of his colon with no lymph node involvement.

Now nearly a year later his colon is cancer free but his liver is not. His liver has been determined inoperable (for now) because of tumor size and lymph node involvement. Top it off with the mutation and our treatment options are very limited. Currently, he's on FOLFOX, 5-FU, and Avastin.

I've stopped looking at the statistics, medical journals, and even getting 2nd opinions. I even spoke with an oncologist in Sweden...chemotherapy is all he's got right now.

I've skimmed through blogs, read people's stories and notice a disturbing thing: most posts from those with Stage IV only respond and keep blogs for less than 2 years. If there are people out there who have made it past the 5 year rate please respond. I have to know there's people out there making it.

Comments

  • sfmarie
    sfmarie Member Posts: 602
    There are many survivors
    And perhaps you should look into SIR Spheres. It has worked for many people, esp. when only the liver is involved. Remember, statistics are just that. Noone knows how each individual will respond. Keep hope alive.
    Marie
  • Lovekitties
    Lovekitties Member Posts: 3,364
    There are for sure
    On the discussion boards page of this site, you will see a list of the boards for various cancer types. Just below that is another section for 'other boards'. Here you will find one for long term survivors.

    We also have folks here who have been actively fighting for over 5 years.

    Hope this helps. Hang out here with us and we will try to help you as much as we can. If there is a treatment or procedure out there for this one or more of the folks here have had it more than likely.

    Marie who loves kitties
  • PhillieG
    PhillieG Member Posts: 4,866
    Stage IV
    Avastin can really do a lot as far as starving tumors in the liver goes. It worked for me. That was 7 years ago. While I am still in treatment, my quality of life is rather good.

    Do yourself a BIG favor and either don't look at the statistics or carefully check the dates of the articles. Things change so quickly that things that are usually online now are already old and not accurate. I stopped reading stats about 6 years and 9 months ago.
  • AnneCan
    AnneCan Member Posts: 3,673
    Welcome Mrs Castillo
    I am glad you have found us here. I was diagnosed almost 2 years ago so I don't meet the 5 year survival rate, but I know people who have. My cancer buddy is a stage IV colorectal survivor of ~ 25 years, + a woman at my cancer centre has survived a stage IV colorectal diagnosis for ~ 14 or 15 years. It can happen!
  • Buzzard
    Buzzard Member Posts: 3,043
    AnneCan said:

    Welcome Mrs Castillo
    I am glad you have found us here. I was diagnosed almost 2 years ago so I don't meet the 5 year survival rate, but I know people who have. My cancer buddy is a stage IV colorectal survivor of ~ 25 years, + a woman at my cancer centre has survived a stage IV colorectal diagnosis for ~ 14 or 15 years. It can happen!

    DX March 25th/08 here and still going, and going, and going...
    Avastin is used in more than cancer too...My mom is 83 and is taking shots of it in her eye to prevent clots that cause increases in blood pressure behind the eye and causing vision loss...She can really tell when the shot is wearing off.........
    and blogging is usually fun at first but it most likely gets left behind as we continue on in this journey..."old bloggers don't die...our pencils just don't work like they use to"......buzz
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Welcome aboard, Mrs. C!
    Sorry for the circumstances you've had to find us, but am so glad you did! As you get to know the characters here on this board, you will find there are plenty of us who have been around long enough to harrass everyone and drive them crazy with our stories :)

    Blogs, like Buzz said, are fine and a novelty when folk first come to the board... and although people may have every intention of keeping them up, life gets in the way (which is a good thing) and the blogs tend to get left unattended. I have a blog separate from these board and have been keeping it updated since I was first diagnosed back in Dec 2006. Actually, my friend started it while I was in the hospital and it was a way of keeping family and friends posted on what I was going through at the hospital... and then we just kept it up. Now, 4+ years later, I really do still try to keep it updated, but sometimes weeks go by... mainly because I'm just so darn busy :)

    You'll also find posts from folk here that are Stage IV and were posting for awhile and then disappeared. Now, don't jump to the wrong conclusions... a lot of folk, once they get stable and the scare is over... they end up getting very busy with families, jobs, and life in general. It's not that they've dropped off the face of the earth, it's just that life has returned to a somewhat normal pace for them ... especially if they are no longer in treatment.

    Then there are those of us who come and go... but always come back to check up on folk and are, hopefully, available to answer folk's questions who have just recently been diagnosed.

    I haven't quite made the 5 year point... but yes, I am Stage IV, am still in treatment (chemo every two weeks for now) and will have hit the 5 year survival point in December 2011. Now, that is not 5 years cancer-free... but 5 years living with cancer and I treat it as a chronic disease, not a death sentence.

    So have your hubby join us... and by all means, you stick around. I think you'll find a wealth of information here... that statistics and outdated reports will never give you :)

    Cheryl
  • Actsassy
    Actsassy Member Posts: 37
    Stage IV
    I am a colon/liver survivor also. I was dx in May 2009. I have not had a colon resectiion and my liver is inoperable also. I have SEVERAL lesions on my liver and on both sides. My onco said "i feel we can control it with chemo. I did the whole infusioin thing along with Xeloda chemo pills. I did that from Juy-December 2009. I was off everything from that point untul the beginning of Sept. this past year. My lesions were mostly gone or asleep! However, back i July/August my lesions woke up. NOthing huge or anything but started the chemo again. I am not having infusions at this point. Only Xeloda chemo pills. Two weeks on and one week off. As of my last ct scan 12/28 by lesions are "vague" and some of them have shrunk by 1/2!
    I too know of someone who has the colon/liver who is like close to 20+ years. It comes and goes. As Cheryl said they treat it as chronic. If chronic is the way to deal with this, where it is a come and go, I will take that! Of course we ALL want to be NED. One day soon, my hope and prayers that it will happen for all of us! Untiil then, I wlll continue to fight the fight. Yes, I have had my ups ad downs but working on trying to stay on the upside.

    Keep the faith going!

    Angie
  • kurtis
    kurtis Member Posts: 17
    I am 18 and I was diagnosed
    I am 18 and I was diagnosed with a rare stage IV colon cancer when I was 16. It is now gone from my colon but returned in my kidney and is also inoperable as of right now. I'm on the same chemo as your husband as well. I'm about to make it to the 2 year survivor mark and there is always hope.
  • GaryinUK
    GaryinUK Member Posts: 62
    Every day
    Something new is mentioned, today I got an email from Cancer Research UK, about a drug currently in use that has been positive in lab tests on mets Col Ca. Trials are neing scheduled, also positive news about how they intend to tackle this.
    My partner who is 20mths since diagnosis is on a trial but its not going well, he is 33 and finding his stomach does not like the pills and anything else that he tries to put down, but there is a lot of stuff coming out, I think some of the drug companies are uping their game as they are all heading down the same path, especially about how to stop rather than cure, the first one who delivers will win and the others will be left watching.

    So stay positive, research and live

    Gary
  • Sundanceh
    Sundanceh Member Posts: 4,392
    Stage IV.....
    .....and have been fighting just 3 months short of 7-Years. So, I'm still out there.

    -Craig
  • Mrs. Castillo
    Mrs. Castillo Member Posts: 8
    PhillieG said:

    Stage IV
    Avastin can really do a lot as far as starving tumors in the liver goes. It worked for me. That was 7 years ago. While I am still in treatment, my quality of life is rather good.

    Do yourself a BIG favor and either don't look at the statistics or carefully check the dates of the articles. Things change so quickly that things that are usually online now are already old and not accurate. I stopped reading stats about 6 years and 9 months ago.

    Alright!
    I can't tell you how much better I feel reading all of the responses to my post. Especially seeing so many who have made it past the awful statistics that are splattered all over the internet and spewed out of oncologists mouths.

    It's good to hear that Avastin works really well. I can know breathe a little bit easier. Sitting in the DR's office, keeping my emotions in check, and asking all the hard questions while my husband stares at the wall is wearing on me. I know he has to remain positive and keep up the fight--I just struggle with the uncertainty of it all.
  • Mrs. Castillo
    Mrs. Castillo Member Posts: 8
    Actsassy said:

    Stage IV
    I am a colon/liver survivor also. I was dx in May 2009. I have not had a colon resectiion and my liver is inoperable also. I have SEVERAL lesions on my liver and on both sides. My onco said "i feel we can control it with chemo. I did the whole infusioin thing along with Xeloda chemo pills. I did that from Juy-December 2009. I was off everything from that point untul the beginning of Sept. this past year. My lesions were mostly gone or asleep! However, back i July/August my lesions woke up. NOthing huge or anything but started the chemo again. I am not having infusions at this point. Only Xeloda chemo pills. Two weeks on and one week off. As of my last ct scan 12/28 by lesions are "vague" and some of them have shrunk by 1/2!
    I too know of someone who has the colon/liver who is like close to 20+ years. It comes and goes. As Cheryl said they treat it as chronic. If chronic is the way to deal with this, where it is a come and go, I will take that! Of course we ALL want to be NED. One day soon, my hope and prayers that it will happen for all of us! Untiil then, I wlll continue to fight the fight. Yes, I have had my ups ad downs but working on trying to stay on the upside.

    Keep the faith going!

    Angie

    Hi!
    I love the fact that you view it as a chronic illness rather than a death sentence. That's going to be my new outlook before I give myself a heart attack!
  • Mrs. Castillo
    Mrs. Castillo Member Posts: 8
    kurtis said:

    I am 18 and I was diagnosed
    I am 18 and I was diagnosed with a rare stage IV colon cancer when I was 16. It is now gone from my colon but returned in my kidney and is also inoperable as of right now. I'm on the same chemo as your husband as well. I'm about to make it to the 2 year survivor mark and there is always hope.

    Wow
    And here we thought that he was the only one out there. Showing up to the treatment center with everyone around us being much older made my husband upset. Me too.

    Do you also have a genetic marker? AJ has a rare genetic mutation that limits his treatment regiment options.

    -Kayla
  • Mrs. Castillo
    Mrs. Castillo Member Posts: 8
    GaryinUK said:

    Every day
    Something new is mentioned, today I got an email from Cancer Research UK, about a drug currently in use that has been positive in lab tests on mets Col Ca. Trials are neing scheduled, also positive news about how they intend to tackle this.
    My partner who is 20mths since diagnosis is on a trial but its not going well, he is 33 and finding his stomach does not like the pills and anything else that he tries to put down, but there is a lot of stuff coming out, I think some of the drug companies are uping their game as they are all heading down the same path, especially about how to stop rather than cure, the first one who delivers will win and the others will be left watching.

    So stay positive, research and live

    Gary

    Gary
    Is he just having stomach irritation? My husband was given nexium to take while undergoing treatment. His first cycle was really scary and he was in a lot of pain. He stomach was killing him.

    After he was given that pill he hasn't had any stomach issues. He does get this marathon bouts of uncontrollable hiccups and bloody noses. But he says overall he feels great. In fact, I've come home from work and found him horse playing with our daughter in the backyard--pump attached and all!

    -Kayla
  • Mrs. Castillo
    Mrs. Castillo Member Posts: 8
    Sundanceh said:

    Stage IV.....
    .....and have been fighting just 3 months short of 7-Years. So, I'm still out there.

    -Craig

    Thanks
    Thanks for taking the time to respond. It means a lot.
  • Mrs. Castillo
    Mrs. Castillo Member Posts: 8

    Welcome aboard, Mrs. C!
    Sorry for the circumstances you've had to find us, but am so glad you did! As you get to know the characters here on this board, you will find there are plenty of us who have been around long enough to harrass everyone and drive them crazy with our stories :)

    Blogs, like Buzz said, are fine and a novelty when folk first come to the board... and although people may have every intention of keeping them up, life gets in the way (which is a good thing) and the blogs tend to get left unattended. I have a blog separate from these board and have been keeping it updated since I was first diagnosed back in Dec 2006. Actually, my friend started it while I was in the hospital and it was a way of keeping family and friends posted on what I was going through at the hospital... and then we just kept it up. Now, 4+ years later, I really do still try to keep it updated, but sometimes weeks go by... mainly because I'm just so darn busy :)

    You'll also find posts from folk here that are Stage IV and were posting for awhile and then disappeared. Now, don't jump to the wrong conclusions... a lot of folk, once they get stable and the scare is over... they end up getting very busy with families, jobs, and life in general. It's not that they've dropped off the face of the earth, it's just that life has returned to a somewhat normal pace for them ... especially if they are no longer in treatment.

    Then there are those of us who come and go... but always come back to check up on folk and are, hopefully, available to answer folk's questions who have just recently been diagnosed.

    I haven't quite made the 5 year point... but yes, I am Stage IV, am still in treatment (chemo every two weeks for now) and will have hit the 5 year survival point in December 2011. Now, that is not 5 years cancer-free... but 5 years living with cancer and I treat it as a chronic disease, not a death sentence.

    So have your hubby join us... and by all means, you stick around. I think you'll find a wealth of information here... that statistics and outdated reports will never give you :)

    Cheryl

    Hello
    Cheryl,

    You know I have asked my husband to join one of these sites; but it seems that he has enough optimism for the both of us. He has always been the happy go lucky type and never let's anything bring him down. I like to think I'm a positive person myself but I also consider myself a realist.

    When we found out about the liver tumors I was very upset with him. I felt like he didn't take his diagnosis seriously and built a fantasy world to live in so he wouldn't have to deal with the reality. I know it may have gotten to this point later in life... I was just expecting for it happen later. In his mind they removed the tumor and he was cancer free. He didn't seem to actively research his condition or follow through with appointments until it became serious.

    Now that it has come back (with a vengeance) I attend all doctor appointments and treatment sessions. I have researched trials, gotten 2nd opinions, even went has far as to contact an oncologist in Sweden! All, to be told that the only option available is chemotherapy at this point. I guess I feel very helpless and I needed to find a place I could share my feelings and frustrations without tearing him down.

    But, I'm glad to know there are people out there fighting and living past the odds. I believe that AJ will be one of them but I just had to see if for myself. (I'm kind of a fact, evidence person).

    -Kayla
  • emrose
    emrose Member Posts: 136
    Similar story
    My husband was diagnosed 2 1/2 years ago. He was 34, I had just turned 27. He really didn't know what to do or how to react for a while. I was very much his advocate, did all the research, asked all the questions, etc. He has thanked me many times because it was just too much for him to do at the time. He had a recurrence a year ago (lung), and became much more involved in the decision making process after that. He became much more aware of the options, and also the reality of the situation. He even participated in the 2011 colondar (colonclub.com) which was a life changing experience for him. He also has the KRAS mutation (but not lynch syndrom). After his recurrence, he did surgery but not chemo. He made some major diet changes and sees an herbalist who specializes in cancer treatment and a naturopath. It's been life changing, to say the least (well, we also had a baby). I've learned everything I can about his cancer and the treatment options. I'm informed and proactive, and I've walked this journey very close by his side.

    His lung surgery was 1 year ago today!! He's had three clear scans since then!

    Let me know if you ever want to talk (PM me) sounds like we have a lot in common!
  • lightchaser777
    lightchaser777 Member Posts: 4
    3.5 years and still going
    Hello

    Thanks for posting. I was diagnosed September 2007. They took out the tumor in my colon, did a resection but I have liver and rt. lung mets. I made a decision from the beginning, this isn't going to be the thing to bring me down. It's a rollercoaster ride. I have had some really bad days, physically (i.e. not being able to eat, fatigue) and emotionally (ie. depressed, crying, frightened). I have really good days and those just plain old normal days.

    People tell me I have a really good attitude. Its not just about being positive, its about accepting what is and taking things a day at a time. The cancer is here and I have a choice of how I am going to deal with it. Sometimes when I get a "vacation" from the chemo, I forget I have it. As some other posters mentioned on here, I too stopped reading statistics. The first one I read was saying an 8% survival rate for Stage 4. It threw me into a tailspin. I found out later that was an old statistic. I don't saturate myself with too many "facts" about my cancer otherwise, it leaves me "staring" at it too much. I try to lead a normal life. I continue to work full time and when I am able, get out with friends and do things I love. I bought a kayak a year ago and recently, a small pickup to haul it. I discovered the spa and massages. Is that the best!!

    Nobody knows what their expiration date is, cancer or not. If it hadn't been for you posting your question, I would not have read further down to others responses that gave me even MORE hope. Angels show up when you need them. Thank you.

    Keep the faith and many blessings to you and your husband on your journey.
  • AnneCan
    AnneCan Member Posts: 3,673

    3.5 years and still going
    Hello

    Thanks for posting. I was diagnosed September 2007. They took out the tumor in my colon, did a resection but I have liver and rt. lung mets. I made a decision from the beginning, this isn't going to be the thing to bring me down. It's a rollercoaster ride. I have had some really bad days, physically (i.e. not being able to eat, fatigue) and emotionally (ie. depressed, crying, frightened). I have really good days and those just plain old normal days.

    People tell me I have a really good attitude. Its not just about being positive, its about accepting what is and taking things a day at a time. The cancer is here and I have a choice of how I am going to deal with it. Sometimes when I get a "vacation" from the chemo, I forget I have it. As some other posters mentioned on here, I too stopped reading statistics. The first one I read was saying an 8% survival rate for Stage 4. It threw me into a tailspin. I found out later that was an old statistic. I don't saturate myself with too many "facts" about my cancer otherwise, it leaves me "staring" at it too much. I try to lead a normal life. I continue to work full time and when I am able, get out with friends and do things I love. I bought a kayak a year ago and recently, a small pickup to haul it. I discovered the spa and massages. Is that the best!!

    Nobody knows what their expiration date is, cancer or not. If it hadn't been for you posting your question, I would not have read further down to others responses that gave me even MORE hope. Angels show up when you need them. Thank you.

    Keep the faith and many blessings to you and your husband on your journey.

    Welcome lightchaser!
    Thanks for telling us your story, + welcome to the forum. There are so many good people here!
  • luvmum
    luvmum Member Posts: 457
    there is always hope
    My mum was dx Oct 2010 with liver met, K-RAS mutated, and not operable at that time. After 1 round of XELOX, 2 rounds FOLFOX, the tumours shrunk and now her liver becomes operable. I still remember the first time we met her oncologist, he told us the change of having a liver resection is very slim...
    Both my mum and myself are trying to keep ourselves positive and it works!
    I wish your husband will do well and remember all of us are different. The research results generated from certain group of patients who participated and that really represent that group of people only!
    My best wishes to you and your husband!
    Dora
  • luvmum
    luvmum Member Posts: 457

    3.5 years and still going
    Hello

    Thanks for posting. I was diagnosed September 2007. They took out the tumor in my colon, did a resection but I have liver and rt. lung mets. I made a decision from the beginning, this isn't going to be the thing to bring me down. It's a rollercoaster ride. I have had some really bad days, physically (i.e. not being able to eat, fatigue) and emotionally (ie. depressed, crying, frightened). I have really good days and those just plain old normal days.

    People tell me I have a really good attitude. Its not just about being positive, its about accepting what is and taking things a day at a time. The cancer is here and I have a choice of how I am going to deal with it. Sometimes when I get a "vacation" from the chemo, I forget I have it. As some other posters mentioned on here, I too stopped reading statistics. The first one I read was saying an 8% survival rate for Stage 4. It threw me into a tailspin. I found out later that was an old statistic. I don't saturate myself with too many "facts" about my cancer otherwise, it leaves me "staring" at it too much. I try to lead a normal life. I continue to work full time and when I am able, get out with friends and do things I love. I bought a kayak a year ago and recently, a small pickup to haul it. I discovered the spa and massages. Is that the best!!

    Nobody knows what their expiration date is, cancer or not. If it hadn't been for you posting your question, I would not have read further down to others responses that gave me even MORE hope. Angels show up when you need them. Thank you.

    Keep the faith and many blessings to you and your husband on your journey.

    well-said
    Dear lightchaser,

    Like what Anne said, I really like your post!!!! positive mind and attitudes are important!

    Best wishes,
    Dora
  • StacyGleaso
    StacyGleaso Member Posts: 1,233
    Almost 10 survivor
    I will be celebrating 10 yrs clear this October. I was stage 4 (liver mets). My doctor even used the word cured. I had chemo, surgery, and more chemo. I had an ileostomy for 9 months and it was reversed. I never did any alternative treatments. I had 5FU, Camptosar, and Leucovorin (lol...not even sure if I'm spelling those right, hadn't had to in SUCH a long time!) I never changed my diet, as it was never crazy out of whack in the first place. I always took vitamins and still do.

    If my little success story helps pull just one person through this experience, then I am a happy little clam.

    Happy Friday,

    Stacy
  • CherylHutch
    CherylHutch Member Posts: 1,375

    Almost 10 survivor
    I will be celebrating 10 yrs clear this October. I was stage 4 (liver mets). My doctor even used the word cured. I had chemo, surgery, and more chemo. I had an ileostomy for 9 months and it was reversed. I never did any alternative treatments. I had 5FU, Camptosar, and Leucovorin (lol...not even sure if I'm spelling those right, hadn't had to in SUCH a long time!) I never changed my diet, as it was never crazy out of whack in the first place. I always took vitamins and still do.

    If my little success story helps pull just one person through this experience, then I am a happy little clam.

    Happy Friday,

    Stacy

    Hey Stacy!
    Good to see you back on the forum!! Uh... well, I know ONE of those happy little blue shirted folk are you, isn't it?? :D:D

    So wonderful to hear it's been 10 years and you are still as clear as a bell... and doing the happy clam dance :)

    Cheryl
  • StacyGleaso
    StacyGleaso Member Posts: 1,233

    Hey Stacy!
    Good to see you back on the forum!! Uh... well, I know ONE of those happy little blue shirted folk are you, isn't it?? :D:D

    So wonderful to hear it's been 10 years and you are still as clear as a bell... and doing the happy clam dance :)

    Cheryl

    You too, Cheryl!!
    Good "seeing" you too, Cheryl!! I am in that picture...I am the blond on the far right, middle row, half standing/squatting. That pic was from the Nashville, TN palooza.