CSN Login
Members Online: 1

You are here

Colorectal Cancer

SimonYong
Posts: 8
Joined: Feb 2019

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

Butt's picture
Butt
Posts: 299
Joined: May 2018

Where are the mets? 

SimonYong
Posts: 8
Joined: Feb 2019

Rectum, liver and lung

Kazenmax's picture
Kazenmax
Posts: 349
Joined: Feb 2016

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

SimonYong
Posts: 8
Joined: Feb 2019

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

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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
Posts: 8
Joined: Feb 2019

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's picture
Butt
Posts: 299
Joined: May 2018

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

Trubrit's picture
Trubrit
Posts: 4824
Joined: Jan 2013

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
Posts: 8
Joined: Feb 2019

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's picture
Trubrit
Posts: 4824
Joined: Jan 2013

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's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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
Posts: 8
Joined: Feb 2019

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.

Trubrit's picture
Trubrit
Posts: 4824
Joined: Jan 2013

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

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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's picture
Copperbluej
Posts: 2
Joined: Feb 2019

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?

Trubrit's picture
Trubrit
Posts: 4824
Joined: Jan 2013

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

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

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.

patsybf
Posts: 1
Joined: Feb 2019

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?

Trubrit's picture
Trubrit
Posts: 4824
Joined: Jan 2013

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

danker's picture
danker
Posts: 1182
Joined: Apr 2012

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!!!

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Danker I've missed you! I'm so glad you're doing so well!

Hugs,

Jan

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

I'm so sorry that you had to discover this group.  I've never been on Lonsurf and therefore can't give you any information on what it is but glad you are tolerating it well.  You have come to a great group of people so I'm glad that you found us.  I'm curious as you said that you have moved to a "government" hospital.  Are you in the states or from another part of the world.  I'm not sure what type of hospital you would have moved to and are you staying there or just for treatment only?  Wishing you the best.

Kim

SimonYong
Posts: 8
Joined: Feb 2019

Earlier I was i  a private hospital,  now I am in a government hospital which is cheaper

Subscribe to Comments for "Colorectal Cancer"