Hai pump end of June but cea rising. Scared

[Cfbiff]

I'm scared and want to cry. We worked so hard to get to the HAI pump and dr kemeny.
In June cea was 129.

Then we had pump placement AND colon resection to remove the primary. They said biopsy showed the primary still alive. Liver tumor biopsies showed mostly or all dead. So we thought cea taken a week and a half after surgery would be lower. It wasn't...came in at 332. But the scan came in showing no change in liver and now a totally clear abdomen...and that was with over a month of no chemo.

We had one full month with FUDR and systemic. Are back in NYC today and cea is 469.

We don't get it. We called dr kemeny this evening and they said they are following it and don't need to order any other tests. Earlier today, she said she thinks I have tumor fever but didn't explain what that is. As I understand it....it could be due to tumor growth or tumor death.
We come back in Sept for treatment and scan.

Anyone else have this happen with hai pump?

[mariane]

CEA flare:
http://www.ahcmedia.com/articles/19242- ... ostic-sign

[saffa]

Hi,

I had the same experience when my HAI was installed and primary respected in Feb 16. I had a month chemo break and then two months of FUDR and Folfox - my CEA went from 180 to 867 and I was going crazy during this time. I would ask at each appointment and they pointed out a few things to me: 1. It could be a CEA flare (this is mostly seen in chemo naive patients treated with oxi - initial flare up before CEA drops again), I think maybe she meant flare and not fever when she was speaking to you? 2. Inflammation due to surgery etc (this is when they would look at other numbers like LDH) 3. They treat in two month scan intervals, so only when a scan shows progression will they change up treatment despite what the CEA says. When I had my scan at the beginning of May it showed multiple new lung nodules which I hadn't seen before. At this point we switched to Folfiri systematic and added mitomycin to the FUDR for the HAI pump. I have had two months of that (unfortunately had a smaller surgery in between to remove my ovary where another met had popped up) and my CEA was responding really well - plummeted from 800 to 200 but I just got back from treatment today to see that it has started to increase again. I know they will tell me I have to wait until September to see whether the treatment is working but I have seen this before and I know it means progression for me. I have gone through all the standard chemos as I have decided I will not do Lonsurf or Stivarga so I am going back to see her on Wednesday to start a clinical trial.

I wish I had a more enlightening story and I sincerely hope that you are experiencing a flare but you still have Folfiri available which gives many people much more time! I would recommend that you start reading up on available clinical trials just to get an idea of what is out there (if you haven't joined Colontown on Facebook yet I would highly recommend it! They have a sub group lead by DK37 where clinical trials are discussed).

I have seen another post on this forum by Jackandkatesmommy - who had a HAI pump and experienced a rise in CEA which then subsequently dropped so it is most definitely possible that it is a flare.

All the best in your journey

[Pita]

Lots of prayers to you cf...

[Cfbiff]

Thank you all. Last evening Dr. Kemeny had her nurse call us with a personal message...."we know you are concerned, but don't worry. We have seen this before. Wait for the scan in Sept. Until then rest easy. ".

Whether she is ultimately right or wrong in this instance, we love dr. Kemeny. She is the first dr. that has shown she has our back. In the limited time we have been with her, she has already called, corrected and changed the course of our local onc several times. He's not fond of her, but we are.

[Jackar0e]

can i ask how you are doing with this my cea on pump has been riseing since install ..