My wheels haven't stopped turning...

[Monimom]

Hi, I am curious, my husband is going for his CT scan tonight to determine what is going on
back in June his CEA started to go up so his Onc ordered a PET scan, results showed nothing ... so she decided to STOP testing CEA as it "caused unecssary anxiety"... 3 months later she decided to check and it has nearly doubled... one thing that changed was my husband switched in Aug. to Xeloda (1800mg twice daily)and they increased his Avastin to 600mg. because hes goin every 3 weeks for it... (he weighs 165 )could that have any bearing on this increase?? is it possible for this increase to be anything besides growth?? this is the CEA numbers she has in his chart

12/20/19- 3208.0

1/20/20 - 1861.8

4/21/20 - 433.1

6/1/20 - 534.6

6/15/20- 582.1

9/25/20- 1474.0


Was waiting to test a careless plan?? I am praying we get good news, my husband said if it has grown, hes quitting chemo...

thankyou , Moni

[claudine]

I do not have an answer to your question (CEA increasing after chemo changes), but I really hope that you get good news after today's scan XXXXX

[boxhill]

Where is/was your husband's primary tumor and has it been resected? Does/did he have suspected or confirmed lymph node involvement? Has there been any discussion of a plan to get him to resection and hopefully NED? Have you considered the possibility of the HAI pump?

From what you say in this post it sounds as if his onc decided that since he had liver mets he was "inoperable" by the "not immediately curative" standard and that's that. Are you both satisfied with that? Have you sought a second opinion from, say, Dr. Kemeny at MSK?

Also, what are the genetic characteristics of his tumor, such as KRAS/BRAF/MSS or MSI, and what is his TNM?

I'm sorry, I can't comment on the CEA question, but I think there is a lot of other important info to consider.

ETA: I looked up your earlier posts and now I remember who you are! I THINK YOU NEED A DIFFERENT ONCOLOGIST. No matter what the scan says.

[Monimom]

Where is/was your husband's primary tumor and has it been resected? Does/did he have suspected or confirmed lymph node involvement? Has there been any discussion of a plan to get him to resection and hopefully NED? Have you considered the possibility of the HAI pump?

Primary is sigmoid colon, no lymph node invlovlvemnt, no this Dr is totally negative about resection, and NED, yes the HAI pump has definately been on the forefront of my mind,

From what you say in this post it sounds as if his onc decided that since he had liver mets he was "inoperable" by the "not immediately curative" standard and that's that. Are you both satisfied with that? Have you sought a second opinion from, say, Dr. Kemeny at MSK? His dr. insists that both lobes of liver having "large " tumors as well as inumerable small extinguish the possibility of surgery , no not satisfied, yes we want to contact Dr. Kemeny and have every intention even more now than prior

Also, what are the genetic characteristics of his tumor, such as KRAS/BRAF/MSS or MSI, and what is his TNM? he is wild type no KRAS /BRAF .. don't know about MSS/MSI or TMN I don't think he had testing for that

I'm sorry, I can't comment on the CEA question, but I think there is a lot of other important info to consider.

ETA: I looked up your earlier posts and now I remember who you are! I THINK YOU NEED A DIFFERENT ONCOLOGIST. No matter what the scan says.

Thank you, I feel like a broken record when I share my concerns here , but I appreciate every reply. and I TOTALLY agree about the DR. we have had insurance issues, lost ours and are paying for COBRA $$ at the moment, DH had finally gone back to work and was just laid off again... when it rains it pours.

[rachelfromnyc]

I can relate to the CEA stress. My numbers aren't the same magnitude but I've read that the trend may be more important than the value. My CEA was 12 at diagnosis then dropped immediately after starting chemo and it was in the "normal" range for a bit. Then it started creeping up and up and up some more, starting in April of this year. My last three readings have leveled off at around 15 but that is even higher than at diagnosis! Oncologist said the same thing. CEA causes too much anxiety and because she doesn't make treatment decisions based on CEA alone, she recommended we only look at CEA every three months at the same time there is a scan so we can look at results together. However I was not ok with that and I ask for CEA to be taken every month. Up to now, CEA is still high but scans are clear. I continue take CEA each month because I like having the data.

I will echo what others have said about a second opinion. I'm at MSK but still work with two other oncologists. One I go to after a scan to see if her treatment plan aligns with MSK's. And the third doc is for if the other two don't agree which has only happened once so far.

[boxhill]

Regarding health insurance, can he get an ACA policy that might be cheaper than COBRA? I know the latter are usually very expensive... I have also heard that those of us who are stage 4 may be eligible for SS disability and Medicare...

I know that there is a group with a lot of expertise that addresses insurance issues in Colontown, the hidden FB colon cancer support/information community. There is also a liver group, a stage 4 group, and so forth. One can belong to as many as are useful. I cannot recommend it too highly and I think you and your H could really benefit from it. If your H isn't interested, you can still join as a caregiver.

[miketom]

I hope things turn around soon

[Monimom]

Thank you, today is the day we learn the scan results ... it's been heavy on my mind, I will post when I can

Moni

[NHMike]

My CEA rose through chemo and I was on Xeloda and Oxaliplatin. The oncologist was also concerned with the rise and ordered a CT and found nothing. I believe that the rising CEA was related to increasing exercise and maybe the Xeloda.

[claudine]

I hope you get good news XXXXXXXXXX

[DarknessEmbraced]

I hope you get good news.*hugs*