So we had to reschedule his appointment because the scan results wouldn't be ready, but the first available was 7/1. I was checking his health portal to confirm I had the right day/time for next week, and saw the PET scan results have been posted. Probably not the best idea, but I read through the r...

626Patient wrote:Sounds like a lot! Hopefully we see a drop in her CEA next month after cycle 2 of Lonsurf! Is he getting a scan soon?

He just got a PET scan on Friday, fingers crossed the results are good. At least we only have to wait until Tuesday to get the results.

After he became stage 4 and finished his chemo cycle (plus some extras), he was on maintenance Avastin until he suddenly became severely anemic. Assuming he had internal bleeding, he went off Avastin and was off for months as his health deteriorated and we finally figured out he had a new tumor caus...

You mentioned his CEA dropped but also his CEA went up first few cycles? Mum just finished one cycle and her CEA shot up really high. The Oncologist did not seem to concerned but we were all shocked it would go up that high. Over she's tolerated the first cycle well. She's gained a few pounds, eati...

I hope your trip to Johns Hopkins goes well! Remember to check if they have some kind of hospitality house, that way you can drive up the night before and have a cheap place to stay, instead of trying to do that all in one day. We did that a lot when going to UVA. John gets a PET scan next month to ...

So we met with the onc today and he wanted to switch mum from Folfox + FUDR to Lonsurf + Avastin. About 2 weeks ago developed an issue with Folfox (Drop in Blood Pressure) which makes the ONC more hesitant to retry. Can anyone give some insight on Pros/ Cons with this specific treatment ? I was tol...

My husband’s CAT scan results look very bad. We don’t see the doctor for another week, but the results were posted in MyChart about two hours after the test. We fed all the info into ChatGPT, and outlook is bleak. But we will just have to see what the doctor says about it. I have no idea what happe...

Hi. My husband has finished four cycles of Lonsurf chemo. Tomorrow morning (yes, on a Sunday morning!) he is getting his first CAT scan since starting Lonsurf in January. I’m nervous. His CEA level is higher than it was back in December, but it may be due to a different infection that he currently ...

May I ask why Avastin was not part of the treatment plan ? My moms situation at the moment is waiting for a Guardant test to check for mutations and then proceed with possibly rechallenging Folfox + Vectibix or Lonsurf + Avastin. CEA has also been a good indicator for her as well John had two surge...

He just finished his first round, which he weathered pretty well with only some fatigue. I know that will build up as the treatments go along, but I'm glad it's not too bad yet. His blood work looks OK considering (still has anemia, but it doesn't look worse which is good), but his CEA is still goin...

Hi. I am new here, and have never posted. But I have been looking at other members’ posts to get information from others going through similar experiences. I “friended” Crikkelkay because I was hoping to send a direct message, but the site won’t allow that (I need to make a couple of posts first). ...

I’m sorry it has been a hard few months. I can relate as I’m currently undergoing chemo treatment after another recurrence. In the fall of 2022 shortly after being diagnosed with stage 3 rectal cancer, I started taking Lonsurf as part of a trial. I was told that it was usually given to stage IV col...

Hi Crikklekay, Have you tried seeking a second opinion of surgeons specialising in Peritonectomy/HIPEC/Cytoreductive surgery. My late husband had a a total colectomy - his entire colon was removed, along with a whole heap of stuff - under this specialised surgery. General surgeons often don't have ...

It has been a very hard few months. Long story short, second reoccurrence of his cancer that is currently inoperable because they would need to remove most/all of his colon to get it and they are worried about further spread than they can currently see. The plan is to do treatment, hope it shrinks t...

It has been 6 years since my husband’s colectomy, and his was an emergency surgery due to a obstruction so I don’t think it will be a one to one with your experience. We were in the hospital for a total of two weeks, but they kept him longer because he was popping a mystery fever in the evenings. In...