Colorectal Cancer

SimonYong
SimonYong Member Posts: 8
in Colorectal Cancer #1

Hi there,

I just discovered this site and noticed that there are a wealth of information pertaining to different type of cancer.

I am a Stage 4 Colorectal patient and was diagnosed way back in November 2017 on my daughter’s birthday. I started with a CEA marker of 6410 and was given only 1 month to live.

Instead I took a chance and decided to go ahead with chemotherapy anyways. My concoction was a mix of oxaliplatin and cetuximab (Erbitux). I took 12 cycles of chemo and my CEA was brought down to 18.6

I thought I was going to be into remission but unfortunately the CEA went up again all the way to 42.4

At that time I have exhausted all my savings and decided to move on to the government hospital. This is where my ordeal started. From 42.4, it has been steadily climbing up to 479, During that time, I was still under chemo with a mix of folfiri, avastin an irinotecan. That did not help and I requested for a superchemo (where I have read it might work). Hence I took a mix of oxaliplatin, irinotecan and cetuximab for 4 cycles of chemo. That did not work and even during tat time I went for a Y90 radiotherapy treatment.

At this moment, I my CEA stands at 479 (might even be higher now) and I am taking Lonsurf. The side effects are tolerable but I am experiencing some blood in my stool again. At this point, I have exhausted all my options and my oncologist gives me only until the mid of this year.

The strange thing here is I am feeling okay aside from the tug and pull from my liver from time and time again.

I have taken 6 PET scans and it is tiring me down everytime I do one.

I am trying to hang on here but everytime the visit to the oncologist is like a death sentence.

The only recourse I have now is I am doing a Tempus test for my DNA and molecular profiling to see if there are any compatible medicine out there that can save me.

Appreciate any thoughts and opinions here.

Best Regards,

Simon

«1

Comments

  • Butt
    Butt Member Posts: 352 Member
    #2

    Where are the mets? 

  • SimonYong
    SimonYong Member Posts: 8
    #3

    Rectum, liver and lung

  • Kazenmax
    Kazenmax Member Posts: 463 Member
    #4
    welcome To the forum. I’m

    welcome To the forum. I’m sorry to hear you are having a hard time. Did they offer surgery at any time? I had Mets in colon and lung. Had both removed and follow up Chemo. My CEA has never been above normal so my doctor does not check it. So far I’m NED. I hope you get some better options soon.

    k

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #5
    Immunotherapy

    Are they checking into immunotherapy? My onc had my tumour tested and it was vulnerable to it and that's what I've been on for a few years. It's being used as a manintenance drug because I'm stage 4 with mets in both lungs, liver, and bowel. I'm just wondering if that's what the testing is about. Not everyone's colon cancer is vulnerable to this treatment.

    By the way, with my diagnosis I still expect to be here on earth for a number of years longer. Not being silly and optimistic, it's a very real possibility. 

    I'm surprised they're doing so many PET scans. Here they rarely do them, they like to use CT scans mostly. I had a PER scan last time because my kidneys aren't great and the CT is hard on them. I'm in Canada.

    Your CEA was astonishingly high! But there have been people on here with very high counts who have had it drop to near normal, so maybe thet'll be you, too!

    Good luck and take care,

    Jan

  • SimonYong
    SimonYong Member Posts: 8
    #6
    Kazenmax said:

    welcome To the forum. I’m

    welcome To the forum. I’m sorry to hear you are having a hard time. Did they offer surgery at any time? I had Mets in colon and lung. Had both removed and follow up Chemo. My CEA has never been above normal so my doctor does not check it. So far I’m NED. I hope you get some better options soon.

    k

    I did mull over surgery but

    I did mull over surgery but my oncologist had advised me against it as it will be life threatening. 

    At this point, I am just trying to get by day by day.

     

    I have finished my first 2 weeks of Lonsurf abd now taking a 2 week break before the second batch. While waiting, I am just eagerly following up with the TEMPUS report to see if there are any findings that can offer a better solution.

     

    Here is to hoping

  • SimonYong
    SimonYong Member Posts: 8
    #7
    JanJan63 said:

    Immunotherapy

    Are they checking into immunotherapy? My onc had my tumour tested and it was vulnerable to it and that's what I've been on for a few years. It's being used as a manintenance drug because I'm stage 4 with mets in both lungs, liver, and bowel. I'm just wondering if that's what the testing is about. Not everyone's colon cancer is vulnerable to this treatment.

    By the way, with my diagnosis I still expect to be here on earth for a number of years longer. Not being silly and optimistic, it's a very real possibility. 

    I'm surprised they're doing so many PET scans. Here they rarely do them, they like to use CT scans mostly. I had a PER scan last time because my kidneys aren't great and the CT is hard on them. I'm in Canada.

    Your CEA was astonishingly high! But there have been people on here with very high counts who have had it drop to near normal, so maybe thet'll be you, too!

    Good luck and take care,

    Jan

    Yes they did and they

    Yes they did and they cobncluded that I am incompatible with immunotheray due to my HERR rating. I am unsure what that means but basically immunotherapy has been ruled out.

    The only pain I am experiencing is the constant pulling on my right side of my shoulder.

  • Butt
    Butt Member Posts: 352 Member
    #8

    This is not a good situation and unfortunately the doc can be very correct plus/minus on time.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #9
    It aint over 'till the fat lady sings

    Appreciate any thoughts and opinions here.

    My opnion, regardless of how dire it all looks, you can still put Cancer in its place.  Think it until you are proven right or wrong. 

    Read JanJan's latest post https://csn.cancer.org/node/318677 (if you haven't already).   So many friends on the forum who are fighting the fight and not giving in; come join us. 

     Tru

  • SimonYong
    SimonYong Member Posts: 8
    #10
    Thanks for all your comments

    Thanks for all your comments and thoughts

    I was reading this forum and looking at my daughters playing.

    No, I will not give up without a fight.

    Regardless what my oncologist says, I will beat the odds. I have made a promise to my eldest daughter to see her graduate and I am very well going to keep that promise.

     

    Wish me luck!

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #11
    SimonYong said:

    Thanks for all your comments

    Thanks for all your comments and thoughts

    I was reading this forum and looking at my daughters playing.

    No, I will not give up without a fight.

    Regardless what my oncologist says, I will beat the odds. I have made a promise to my eldest daughter to see her graduate and I am very well going to keep that promise.

     

    Wish me luck!

    Several

    We have several men on the forum who have made the same promise to their daughters, all Stage IV. They have not only seen their daughter's (and son's) graduate, but have walked them down the isle and held their grandchildren in their arms.  

    Allot of folks, when they have fought hard and have won the fight (I prefer to say winning the fight), go about their life, and the forum is a fond memory, so you don't see them post about their success. Some will pop back now and again.  

    They are out there, I promise, and you can be one of them. 

    The fight is on. Win it!

    Tru

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #12
    Trubrit is correct!

    Trubrit isn't saying these things just to make you feel better, she's being honest. Never give up hope until the end. I've heard of people who were in really bad shape who rallied back, I've heard stories of people who have been stage 4 and are doing great, Trubrit being one of them. One member on here was treated with the same chemo I'm on and in one series of treatments beat his cancer. It's not the same for everyone and it's good odds that you'll be around for longer than you've been told. 

    Like we say on here, the doctor doesn't know unless he's going to show up at your door with a gun. They can be very far off and there are other factors involved.

    And thanks for linking my post Tru! You make me feel special! I'm still doing better every day. 

    Jan

  • SimonYong
    SimonYong Member Posts: 8
    #13
    Just got back from my

    Just got back from my oncologist. Cancer marker is now at 1111.

    Still not giving up. Hopefully my Tempus results will offer a targeted treatment.

     

    Still hoping.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #14
    It's going in the right

    It's going in the right direction, yay! I'll know on Thursday where I'm at, I'm actually looking forward to it. I sit in the chair for chemo and look down at my chest and abdomen ( I have mets in both lungs, liver, and bowel) and think to myself "yeah, that's right you little buggers, die". It's empowering.

    Here's to the next CEA being under a thousand for you!!

    Jan

  • Copperbluej
    Copperbluej Member Posts: 2
    #15
    I'm new here.

    Hello all,

    This is my first post here as I'm new here. I was diagnosed with colorectal cancer late last summer and treated last fall. So far, the tumor is still gone and my CT scan was good.

    I read your comments and was surprised by my lack of knowledge on markers, ratings, types of chemo, etc. I feel ignorant! 

    I never got numbers and such. I wonder why?

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #16
    Stay Positive

    Simon, As Tru said, there are several people on this forum that are Stage 4 and have continued fighting for a long time.  I am stage 4 and am currently going on 13 years of fighting.  The cancer has returned twice over the years and will likely return again, but I am here to tell you that you can live with cancer.  Take things one day at a time and stay as positive as you can.  We are all here for support and advice when you need it.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #17
    Copperbluej said:

    I'm new here.

    Hello all,

    This is my first post here as I'm new here. I was diagnosed with colorectal cancer late last summer and treated last fall. So far, the tumor is still gone and my CT scan was good.

    I read your comments and was surprised by my lack of knowledge on markers, ratings, types of chemo, etc. I feel ignorant! 

    I never got numbers and such. I wonder why?

    Welcome to the forum

    Don't be worrying about ignorance. You're only ignorant when you KNOW the information is out there and you're NOT bothering to learn it.  Now that you know about markers, I've not doubt you will want to learn more.  You are NOT ignorant!

    Here is the forum home page https://csn.cancer.org/forum/128   it would be wonderful if you opened your very own thread and told us all about yourself and how we can help you. 

    Tru

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #18
    SimonYong said:

    Just got back from my

    Just got back from my oncologist. Cancer marker is now at 1111.

    Still not giving up. Hopefully my Tempus results will offer a targeted treatment.

     

    Still hoping.

    it is still just a number. Helpful for the Doctor's but for you, put it as much as you can to the back of your mind, and keep doing what you are doing to fight the fight. 

    Tru

  • patsybf
    patsybf Member Posts: 1
    #19
    Cancer diagnosis

    I have just been diagnosed with rectal cancer that is also in my female area. Supposed to go on pump and radiation soon. Terrified. Any good thoughts?

  • danker
    danker Member Posts: 1,276 Member
    edited February 2019 #20
    To patsybf & copperbluej

    I am living proof that Cancer can be beat!  Dxed at age 77,bumppy road thru 1910.  Soon to be 87have been NED( no evedence of disease)ever since.  If I could do it at my age, surely you can also become NED at your young ages.  Good Luck to you both!!!

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #21
    patsybf said:

    Cancer diagnosis

    I have just been diagnosed with rectal cancer that is also in my female area. Supposed to go on pump and radiation soon. Terrified. Any good thoughts?

    Welcome patsybf

    We have a great support system here, on the forum. 

    May I suggest you start a brand new thread, where we can welcome you and share our plentiful thuogts and advice. 

    Here is the link https://csn.cancer.org/forum/128

    That way, we won't take over Simon's thread. 

    And don't worry, being terrified is all a part of the journey, the start of the journey. The fears, while maybe not going away, certainly alleviate as you head into treatment, and know that you are fighting the fight. 

    Tru

Discussion Boards