I've been lurking for a few months and decided to create an account to answer a question. So here is my introduction.
I was diagnosed with colon cancer on my very first colonoscopy at age 53. Surgery to remove the right ascending and resection done. All margins were clear, no chemo prescribed. Got a twofer out of the deal. Appendix is gone, never have to worry about having an appendix attack
It wasn't a mass, just a largish area that was a different color.
So I do the routine blood every xx months, next colonoscopy all clear etc. A couple of years doing this and I get lax. Never entered my thinking that anything would present itself and I assumed that I was cancer free for life. We get busy with life and had our new house built so I skipped out on my blood checks.
Now it's three years later, I'm 56
So Mother's Day
That weekend I fly north and the first night extreme pain in my abdomen. Distended belly. I'm think probable blockage...
get home on Mother's Day and pain still comes every so often. Hubby says ER! Ok, off we go.
CT scan shows seeding in my omentum and caking on my liver. Shit! They say the 'C' word. Again.
They want to keep me and do a laparoscopic diagnosis. I refuse and say I want my surgeon to do it. They release me after calling my surgeon. He's not affiliated with the hospital I went to the ER.
Diagnosis confirmed. Cancer on the omentum causing fluid to buil in my abdomen. Ascites. New words for me.
Not operable, chemo required.
I looked like I was 5-6 months pregnant.
Oncologist selected, port placed, PET scan done.
First CEA 217
Second CEA just before first chemo 219
The ascites causes major pressure on all organs. Can't fill up the tummy with food. I always feel full and uncomfortable. Walking puts almost unbearable pressure on my ovaries and other organs.
I ask the oncologist just before my 1st chemo (I like her and she took the time to answer all my questions I had written) when will the ascites start to go away? The Avastin will help with that and it should start workin after the first or second dose. I have to wait until the second chemo round before getting the Avastin since it is a blood thinner and I was still recovering from the surgery. She said she could drain it butt I decided against that and wait it out. I was tired of being poked.
Second chemo: Avastin introduced to the mix. Yes! It worked! Belly is now normal. It took about 4 days after its introduction butt it worked.
I've now had 4 rounds and the last CEA 202. I had wished it was a lot lower butt there is a downward drop so I guess that's good...
Next PET scan scheduled for the 29th. I'm scared butt hopeful.
Fighting with the ins company on getting the markers. The one thing I do know, it's not genetic. That's good news. It's not something that I passed to my kids.
Theory is that when the section of colon was removed, some cells leaked out into my abdomen. Hence the seeding. Unusual and unlucky.
I have the usual side effects: cold sensitivity in the hands and drinking cold things. First bite that happens each damn time I go to eat if I've let a couple of hours go between eating. 5FU has its own little side effect that I call nasty mouth syndrome. Asked my onc about it and she prescribed Magic Mouthwash. Works like a charm. Takes about 4 days and all is well in my mouth again.
I've already had to have the Oxi reduced. Third round created a bit of a scare. Left wrist went numb and while I was saying something to the nurse, my tongue didn't want to work right. Blood pressure checked 191/86. Checked for any stroke symptoms. Smile symmetrical, made sure I had the same strength on each side. It went away after about 15 minutes. Scary though.
4th round: no scary shit happened:
This 5th round coming up will be just before an already planned trip. Going north for oldest grandchilds hischool graduation party. So blood wrk will be taken, Avastin and one push of 5FU, no pump this time. No Oxi so I don't have side effects for the time I'm gone. 10 days of relative normalness (is that even a word?)
Long term... like the onc says, let's just get me into remission and we can talk about getting me somewhere that will possibly get this out of me. She did say it won't be around here. Good, I want someone that specializes in where this cancer is in my body.
So that's me in a nutshell.
I'm an optimistic, positive person. After the first initial emotional breakdown, I'm in for the fight. I will beat this again.
Lesson to all, do not let your guard down. Keep getting your blood work done or whatever the docs say to do. I f'd up and am now fighting harder than I had to.
I thought I had it licked. I didn't.