The Colon Club

So we're a little over 2 months from colon resection and HAI pump placement. It's the first time I've seen A cea count since before surgery and maybe they calculate different from our cancer center but it was over 1,000!? He hasn't been back in systemic yet, taking cues from his body to take the maximum time to heal before resuming. I worry and now I'm not sure where the baseline for worry begins and ends because with the pump his liver numbers will always be "off". When am I merited a full on freak out here?

I don't have much advice but we are in a similar position right now... my boyfriend's CEA today was 2900, up from 2400. He is on FOLFOX and his scan last week was stable.

Is he getting chemo from the HAI pump? Or is he still recovering from the surgery before starting that? What was his CEA before surgery? I think an elevated CEA is to be expected if he hasn't had his liver resection yet. But what was his last CEA count?

Just as a note, CEA is not a liver number. It is a general tumor marker, so I don't think the HAI pump would affect it.

The HAI pump may impact the liver enzymes, but it wouldn’t impact the CEA. The number you shared is definitely above the “safe” range but hard to know how to feel about it without knowing if it’s higher or lower than it has been. But 1000 does suggest there is active cancer in the body - maybe no surprise to you. Remind me, is he working toward a liver resection?

What did the doctor say? DH had a non detectable level of CEA when he was diagnosed (and riddled with cancer). As he did chemo and pump chemo it did rise, but I think the highest for him was about 11. Ironically, his CEA is lowest when he has active tumors. Go figure. And yes, your DH's liver enzymes will elevate with the pump chemo. But it won't be an always. And they have meds for it. I would call the doctor about the CEA level if it were me. Could be lab error, and another draw might help. Or maybe it is time for a PET scan

Mohrfamily wrote:So we're a little over 2 months from colon resection and HAI pump placement. It's the first time I've seen A cea count since before surgery and maybe they calculate different from our cancer center but it was over 1,000!? He hasn't been back in systemic yet, taking cues from his body to take the maximum time to heal before resuming. I worry and now I'm not sure where the baseline for worry begins and ends because with the pump his liver numbers will always be "off". When am I merited a full on freak out here?

How large is the increase from his last CEA test? If it's significant, it might be wise to have a CT scan to check things out.

Is there a reason he isn't doing systemic? Two months is a long time to go without systemic chemo. I remember he had a nasty infection but time is of the essence.

And you're right about CMP tests being off while there is FUDR in the HAI pump. However, like Gina said, that wouldn't affect CEA. Hope you can get some info soon!

Juliej

AlexandraZ wrote:Is he getting chemo from the HAI pump? Or is he still recovering from the surgery before starting that? What was his CEA before surgery? I think an elevated CEA is to be expected if he hasn't had his liver resection yet. But what was his last CEA count?

I honestly can't remember what his last CEA was its been so long ago, like September, and I'm not sure if the measurements differ from hospital to hospital but I do know that based on our local oncology numbers they were below 1,000. The new doctor just messaged me back suggesting a consult with our systemic chemo oncologist to possibly resume and a PET

ginabeewell wrote:Remind me, is he working toward a liver resection?

He's working toward anything that will keep him alive and kicking. These HAI doc suggested a PET and check in for systemic.

kandj wrote:What did the doctor say? DH had a non detectable level of CEA when he was diagnosed (and riddled with cancer). As he did chemo and pump chemo it did rise, but I think the highest for him was about 11. Ironically, his CEA is lowest when he has active tumors. Go figure. And yes, your DH's liver enzymes will elevate with the pump chemo. But it won't be an always. And they have meds for it. I would call the doctor about the CEA level if it were me. Could be lab error, and another draw might help. Or maybe it is time for a PET scan

There doctor messaged back today suggesting we reach out to our local onc to resume systemic and a PET. what I don't understand is I just got the CEA result and its dated from December?

juliej wrote:Is there a reason he isn't doing systemic? Two months is a long time to go without systemic chemo. I remember he had a nasty infection but time is of the essence.

And you're right about CMP tests being off while there is FUDR in the HAI pump. However, like Gina said, that wouldn't affect CEA. Hope you can get some info soon!

Juliej

Doctor messaged back today suggesting a reach out to our local onc about resuming systemic and maybe a PET. He didn't want to rush systemic while he was healing and going through the infection stuff and extra hospitalization. He's got a CT set up for March 2nd and he was going to decide then about systemic, but it's been weighing on my mind a bit and apparently for good reason. Now he's nervous because calls were made between offices and the local called him to set up. Im trying to not show my own anxiety that would make it worse for him. He's been doing really great everyone says you'd never know about the diagnosis by looking at him.

Mohrfamily wrote:

ginabeewell wrote:Remind me, is he working toward a liver resection?

He's working toward anything that will keep him alive and kicking. These HAI doc suggested a PET and check in for systemic.

Ok, sorry if I am getting this wrong, but let me recap and tell me if I am right. He has metastatic spread to the liver and spleen. He had FOLFOX (did he finish the 12 rounds?) and has had a surgery to remove primary and place HAI. That was in November and he hasn't had any chemo since? Not even FUDR? I mean, and I do not mean this to be rude or glib, it seems obvious hat he has either growth and/or new spread. No chemo for 3 months seems risky at best. I would immediately schedule systemic to restart and for FUDR to be put in that pump. I understand your DH wanting to be fully healed, but lets be honest, they will never be fully healed. that ship sailed the day they got diagnosed and won't be back until they are NED for a while. You asked in your first post if a full freak out was warranted. Yes, it absolutely is. But instead of freaking out, put that energy into calling the oncologist and getting him on the schedule for next week. The PET or scan can wait until march. The chemo can't. And if OSU (is that Oklahoma or Ohio?) hasn't put FUDR in his pump yet, get that scheduled too. You got this! You can be his advocate and get this ball rolling.

No no say what needs said that's why I'm here lol.
Recap: stage 4 crc, liver dominant. 2 and a half years on folfox + vectibix, completed a full 12 rounds with oxaliplatin before being cut off in the first year due to neuropathy. November 11, 19 had first surgery to remove the tumor in the colon, 2/32 lymph nodes positive and HAI placed. He DID start FUDR 2 weeks after surgery and has been on a regular 2 week schedule (fudr,flush etc)

I just looked over the date of the CEA and it was dated back in December, shortly after his stay in the hospital for possible infection/ fluid around there pump which came 1 month after surgery. So now I wonder if the high CEA was because it was still close to surgery and a hospital stay or if I do need to worry. Either way we have an appointment set up to resume systemic.

He keeps blaming the HAI no matter how many times I remind him CEA is not a liver tumor marker and he should have been back on systemic in January at the latest :::punch in the face:::

Ok, so that is good he’s been getting the FUDR. That should keep any of the Mets in the liver from getting bigger (hopefully shrinking them. And yeah, it might raise his CEA a little due to inflammation but we are talking a few points, not thousands. He will get new blood work before chemo so make sure there is a CEA in the orders. I don’t get the reluctance. He went through the effort to get the pump, time is of the essence! Get a new scan, get back on chemo, kick this bullshit to the curb.

He's on board now. He just switched hospitals for treatment and it's much closer now and the new doctor ordered fresh bloodwork the same day as the "meet n' greet" so he has a baseline CEA, liver panel etc and I think after he sees those results they'll decide when and what scan to do.

My hubby is one of those stubborn men that you can't tell anything to, he has to fall on his face first.

For those still checking in his CEA is at 4,000. There hospital that performed the surgeries have been checking this monthly since November and saw the rise but never told us. They didn't say anything about it till I asked them about it.

Today we saw our local oncologist who ordered scans asap and already putting in treatment changes to FOLFIRI with the insurance and we haven't seen her since October but she's on it!

That’s great she is on to it . Now back to treatment and get it all under control .
Wishing him every success ,
Stu