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newbie here

mickellick
Posts: 2
Joined: Feb 2020

I was diagnosed with stage 4 colon cancer that spread to liver and lungs in August. My initial CEA was 247. Of course I was devastated, my doctor ordered a liver biopsy just to confirm what CT scan showed (2 inch tumors on both sides). For two weeks without really knowing anything I was numb, and one Sunday I remained on the couch in the fetal position most of the day. I would learn later that surgery for colon was not an option, it was straight to chemo and so I began the journey of taking my body back with a 12 treatment plan in place. My doctor did not want me going online and looking at anything. I agreed and feel it was the best decision for me at the time. I was totally positive, focused and removed everything negative in my life which included politics and the news! I promised myself that I would fight the good fight and I have. I even went so far as to imagine a HS buddy of mine (who was a fighter pilot) and his buddies shooting at the cancer when the chemo was being administered. Hey whatever works, right?

My progress has been amazing, I get the standard colon chemo with the ball and chain for 46 hours. Up until now I have chosen to be ignorant and not memorize the names of the chemos in treatment, look at my odds, go online or join any chat groups. What has changed now is that I'm told I'm in bio something remission, my CEA after 11 reduced treatments (had to pull back full strength due to side effects) is now a 2. I go for a pet scan at the end of the month and see where I go from there. In the meantime I'm continuing with chemo to get the full 12 doses as prescribed by my doctor.

My point, (yes, I do have one!) is that now that I have finally decided to get out there and learn more about my disease and so on... I was lucky enough to find you wonderful people. I had heard of other groups and briefly looked only to decide they were not for me at all. This was such a welcome breath of support, truth, guts and glory. Happy to be here.

abita's picture
abita
Posts: 813
Joined: Dec 2017

Your cancer is completely gone with chemo alone? That is amazing! Have you gotten ct scans to show the shrinkage along the way?

 

Happy for you! That is incredible!

mickellick
Posts: 2
Joined: Feb 2020

Thanks Abita for your reply. I had initial CT scan in August which showed cancer had spread to liver and 1 lung. In December I had pet/ct scan which showed lung tumor gone, no longer active, 50% reduction in liver tumors and the colon was also greatly reduced, by more than 50%. My CEA numbers have been rather remarkable, after 3 treatments down to 78 from 247, after 6 treatments I'm at 10. Even my doctor was/is very excited. As I mentioned earllier my CEA is now 2.

 

I'm confused because even though I've responded well I'm told I'll need to be on a chemo maintenance schedule for the rest of my life. I don't know if it's the type of colon cancer or how far advanced it was when discovered but I'm struggling with that. I see many here with NED (learning the lingo) and wondering even if the cancer is gone does stage 4 diagnosis mean a maintenance program forever to keep it from coming back. Again please forgive my ignorance but I am just now starting to educate myself.

abita's picture
abita
Posts: 813
Joined: Dec 2017

My understanding is that there can be residual cells that will start to grow back when chemo is stopped. Your response to chemo is truly amazing. My liver tumors shrunk to can't be seen on ct, and my lung tumors only stopped growing. 

flutemon's picture
flutemon
Posts: 24
Joined: Jan 2019

I'm stage 4 with a right sided crc. My mets were liver only.  After colectomy, chemo (folfiri+Avastin),liver resection, sbrt for 2 other liver mets, and mop up chemo(folfox), my scans showed NED.  I went 6 months NED with no treatment then had a 1 cm met pop up in my liver.  I'm now on a clinical trial for immunotherapy. Waiting to see if it shrinks this new liver met.  But I assume at some point the met will be removed or blasted in some way.  That seems to be the way to NED.  Sometimes I wish I had a crystal ball....

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

Welcome to the group, and you are right, we are an amazing group.  We have much knowledge here and can answer almost all of your questions because so many people have experiences here that probably match yours, in one way or another. 

You have shown very good response to treatment, and that is wonderful. 

Wishing you the best with the scan you have coming up.  Feel free to continue to share your story with us.

Kim

SnapDragon2's picture
SnapDragon2
Posts: 312
Joined: Nov 2019

Wow!!!  You have responded amazingly great to treatment.  I am so happy for you. 

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