First Post Stage IV

Onmyfeet

After reading stories for two years and and talking with people who are in the fight, I was encouraged to share my story. I can only hope it helps someone.

After 3 months of testing; blood, stool, urine. Dr.'s were convinced I had IBS and stress induced constipation. A colonoscopy was finally ordered. I was diagnosed December 7, 2021. A mass was found at the base of my colon. They said not to worry I would have surgery the following week to have it removed. A CT was ordered to determine exact size and location of the mass. The CT revealed I had 12 spots spread through both sides of my liver. I was now diagnosed stage IV, and was told surgery was not an option. I was 36 years old.

My Port was put in in January of 2022. I immediately started chemotherapy. My initial regime was leucovorin, oxaliplatin, irinotecan,  fluorouracil, and mvasi, every two weeks. I did 6 cycles of this and had another Ct. This scan showed the chemo was working. All of the cancer had shrunk, and 4 spots had disappeared. My case went before a tumor board and they decided surgery was an option. I did 5 more rounds of chemo and had my first liver resection in July of 2022.

It was a nine hour surgery. Surgery was considered a success, with clear margins. Post surgery my stomach shut down for 3 days and I developed a soft tissue channel/sinus in my chest that would not close due to the constant fluid flow from around my liver. This wound would not close for almost a year. I did 2 more rounds of chemo in September of 2022 and prepared for my colon surgery in October.

I woke up form colon surgery with a surprise ostomy bag. This was quite the surprise but I was informed it was only temporary and again surgery was considered successful with clear margins. At the end of December 2022 I had my ostomy reversal. I was ready to start a new year.

In January of this year I had a follow up CT. It revealed 4 spots had shown back up on my liver. My Dr.'s decided on more chemo and a second liver resection. This chemo regime was dialed back to only irinotecan, the  fluorouracil, and mvasi, I did 5 rounds, again every two weeks.

I had my second liver resection in May. This surgery was only 7 hours, mainly due to the amount of scar tissue and the fact that while trying to free my liver from the scar tissue and my diaphragm, my lung was nicked, requiring a chest tube for a few days. They closed the chest wound that had been open since the previous July, and again, clear margins.

My oncologist gave me the option; take 3 months off and then we'll do another scan, or do a few rounds of "mop up" chemo and then a scan. As much as I craved a break, I decided to opt for the chemo. I did 3 rounds and got another CT. This one revealed 3 more spots on the liver. At this time my oncologist determined the irinotecan to be ineffective. We would continue the chemo but switch back to the oxaliplatin, leucovorin,  fluorouracil, and mvasi. I have done 4 rounds of this, with 2 more scheduled before my next scan.

As I right this I am currently on a 3 week break before my next 2 rounds and another CT. I am celebrating my 38th birthday. I am enjoying the time with my wife and two boys(4 and 2). I am golfing, camping and enjoying wine. Through this whole process, I have only stopped work to recover from surgery and taken the occasional Friday off to recover from chemo.

I have met and talked with other people fighting who have it much worse then me. I refuse to let this disease make me feel sorry for myself, I refuse to let it dictate my life any more then necessary. This disease is not who we are, it is not the defining point of our life, if it gets me in the end, I am determined to go out on my feet. We can never stop fighting!

SandiaBuddy

You have had a quite a journey and your resiliency is impressive. Thank you for sharing this.

Canadian Sandy

Thank you for sharing your story. Your positivity is impressive and will help many people on this site. My heart goes out to you. Prayers are sent your way.

Trubrit

My word, you have been through the mill, and yet you stand positive, and ready to face whatever is ahead. I am impressed, as I have already decided that I have no fight left, and during my recent scare, I had resigned myself to what I was hoping would be a quick passing.

So, my hat off to you, and thank you for your wonderfully detailed post. It will help so many people, who are currently in the battle.

I wish you every success, as you move forward.

Tru

blanco55

this was a great testament to your resolve. I hope you are still fighting! This is an old post now.