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I hate numbers!!!

Twinzma
Posts: 220
Joined: Jan 2018

My husband had a rise in his CEA levels a few months back so he was switched from Folfox w/avastain to Folfri w/Erbitux. His CEA had dropped to 26 under the new regime, scans last came back with a lot of mets gone and the rest measurable from CM's down to MM's. Now his CEA is rising again every 2 weeks from 26 to 31 now 68. I KNOW the CT is more important than the CEA but darn those numbers are haunting me. His oncologist was out so the news was delivered by the ARNP so I don't know if they will change drugs again. It's too soon for another CT so we were told after another 3 sessions. He gets a chemobreak for the 4th of July so this means we have to wait 8 weeks for another CT!!!!

I hate numbers, I know it's only a number that it is not the entire picture but I just can't get my mind to shut them out. Stupid me confided my fears to my 88 year old mother and wouldn't you know the battleax (sorry mom) told our young kids that their Dad's appointment didn't go well!!!! I am just over the top worried and now absolutley TICKED off. 

So here I am venting and asking, though already posted a zillion times about CEA numbers, to PLEASE say something to me that will help me cope to till the next scans are done. 

Trubrit's picture
Trubrit
Posts: 4960
Joined: Jan 2013

I don't think anything we say will alleviate your fears.  But our posting in response, will let you know that you  are cared about, and that we WANT you to not worry, even though we KNOW that won't happen.

I'm not even going to address the CEA.  All I want to say is that you and your hubby are in my thoughts and prayers. I hope the chemo break over the 4th, will be good for him and you. I wish that you were able to lay your worries aside.  Sometimes I tried to tell myself that worrying won't change whatever the results are. It worked at times, and other times, the worry was just to great to overcome. 

I am so sorry this is happening to you both, and I'm sorry your mum couldn't keep quiet about your fears. I'm sure she only had the best intentions. 

Cyber hugs

Tru

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Trying to stop worrying can be like trying to stop breathing. It's impossible. When I originally had cc my CEA never went above normal. Now that I have mets it goes up and down depending on if I've had chemo or it's been a while. Right now I'm at 50 something and not doing chemo until September. It's been over a hundred in the past and then dropped to under ten with chemo so I'm hoping this will be the case again. Probably because it wasn't an indicator for me in the past I don't put much stock into what it is now. 

Is it possible it goes higher during some chemos because the tumour is shrinking and CEA is a chemical that the tumour leeches out? I've never had a ct scan during chemo, only before and after.

Jan

Woodytele
Posts: 163
Joined: Apr 2017

CEA can drive you crazy, up then down, then back up.  It’s frustrating for all of us, plus you know that if it rises, there are drastic med changes coming your way. Makes me crazy. 

 

 

plsletitrain
Posts: 253
Joined: Jul 2017

My CEA arose for just a bit a few months ago but was still within normal but I feared it like it was higher than 10.  So what I  did is I stopped having my CEA taken. lol I know I'm trying to doctor myself but I can't help it.  Its an out of pocket expense, plus when I had the tumor on my colon it was also within normal range so it doesn't speak much for me.  I rely more on the CT/PET scans.  I know its easier said than done, but try not to get so worked up with the numbers.  

Ruthmomto4's picture
Ruthmomto4
Posts: 640
Joined: May 2013

is the worst torture device on the planet. It’s so up and down, my husband had one two days in a row only because his regular oncologist appointment was the day before his hai pump oncologist and it was almost a whole point different in just 24 hours. Just try and focus on the ct scan as much as possible it’s way more important.

Twinzma
Posts: 220
Joined: Jan 2018

I was having a rough day and had to vent. There are days I just get so overwhelmed and my mom sent me over the top. My husband is taking the kids to the beach today and I will join them Monday afternoon. I finally suceeded in finding a specialist for my angioedema of course right in the middle of what was suppossed to be a needed vacation! At least this gives him time to bond with the boys and I can have a good talk with mom and her role in all this mess. Stress can trigger angioedema attacks which is very scary considering our given situation and I can't have her adding to it. 

That said, I will remain focused on the picture. His CT scan was positive news and until his next scan I WILL stay focused on that. 30 mets most are no longer visable is awesome. CEA is just a number, and no one is a number. 

Thanks all for your support......Hugs

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I'm going through the same thing this morning as I got my latest number and it's above normal for the first time and has been accelerating. I have scans tomorrow morning because of it. The oncologist said that it hasn't turned out to be an issue with other patients - he's only seen one case where it turned out to be a Met and it was removed with surgery. It has been rising through chemo. So yes, anxiety for sure. There's nothing more that I can do about it and scans will hopefully relieve my concern. A little.

Twinzma
Posts: 220
Joined: Jan 2018

He must have had a mild infection. No chemo change and the CEA came back down to it's lowest level at 24. As I said, I hate numbers! It scared the heck out of us all. Still anxious for the next CT but I am feeling much better about it. I have health issues too so this rollercoaster we are on is the worst ever. I spent 3 nights in ICU this week because of my idopathic angioedema. Our kids are only 12 one of us needs to be around to raise them. 

Thank you all for your continued support, I am so sorry that cancer brought us together, but I am so glad we have each other on this long journey. Hugs

 

Trubrit's picture
Trubrit
Posts: 4960
Joined: Jan 2013

I am happy that your husbands CEA is down to his lowest level, and that he is doing better. Sad to hear that you are struggling with your own medical issues. I hope you are able to care for yourself. Being the mother of twins and the caregiver to your beloved husband, probably has your stress level cranked to its highest. Take time for yourself and hopefully your health will improve. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6305
Joined: Feb 2009

So glad to hear that your hubby is doing better and numbers have gone down.  Remember that a lot affect the numbers of the CEA so a rise can be anything.  Sorry to hear of you though.  It is tough when you are both not feeling well.  Wishing you both the best of luck.

Kim

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