Cea on the rise

Please feel free to read, share your thoughts, your stories and connect with others!
AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: Cea on the rise

Postby AlexandraZ » Thu Feb 27, 2020 6:22 am

I just wanted to say I feel for you! I know how scary it is when the CEA is just rising and things are looking scary. But you still have so many options, so that's a big positive.

You are a great wife and I am sure he appreciates everything you do. I'm not trying to give you advice as I don't know all the details. If this doesn't apply to you, just 100% discard it! But with my boyfriend, I REALLY try to be extra compassionate and understanding. It's hard, but he is the one whose life is in danger and I can't pretend I know what that's like, though the thought of losing him is almost worse than the thought of dying. So it's hard to really get what he's going through. I felt so much responsibility and guilt for a while, and when I talked to my boyfriend about it, he totally disagreed and was like "Don't worry, it's my life and it's my responsibility. If I die, that's 100% on me". I don't know what I'm trying to say exactly. But I just know how hard it is to be rational during rough times, for both the patient and the caregiver. You're doing a great job! <3
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Thu Feb 27, 2020 7:39 pm

I want to thank all of you. Some stuff wasd hard to read but necessary and wise.

In terms of "owning his cancer" it hasn't been a choice or motto among us. It's that "In this family no one fights alone". We're not given a choice in this as a patient, caregiver, friend, relative etc. No one wakes up in the morning and says "What to do today? Hmm maybe I'll try cancer" like it's a brand of coffee creamer.

Today listening to old music made me I'm not sure the right word but maybe you'll understand:
My Way- limp bizkit
When I'm Gone- eminem
It doesn't matter- linkin park
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

stu
Posts: 1345
Joined: Sat Aug 17, 2013 5:46 pm

Re: Cea on the rise

Postby stu » Fri Feb 28, 2020 2:48 am

My mum’s liver surgeon quietly said even the strongest person gets depleted in this process after a few years and I think he is right .

Your both just weary. Don’t be hard on yourself as this is tough , really tough for you both .

He has the emotional , physical pain and his mortality racing through his mind . And you exhausted trying to navigate the multitude of issues this throws up . Everything is amplified.

You are doing great and meeting all the needs of young children , your husband and your own needs is a lot . Do what’s required of you today and slip away to a quite corner for a coffee .

Thinking of you and sending love to you both .

Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Fri Feb 28, 2020 10:11 am

5FU comes off today and says he actually feels better on chemo "I must be messed up" he says, in a funny way.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

User avatar
ginabeewell
Posts: 414
Joined: Wed Oct 24, 2018 10:30 am

Re: Cea on the rise

Postby ginabeewell » Fri Feb 28, 2020 11:32 am

Mohrfamily wrote:5FU comes off today and says he actually feels better on chemo "I must be messed up" he says, in a funny way.


I think that is understandable or at least I can totally relate to it. I was terrified when they told me that they did not think I should do chemo after my surgery. There is a sense of security that comes with being on the medication, even if it makes you feel god-awful physically, at least it feels like you are DOING something.

And that suggests to me that he has not completely given up, no matter what he told himself in that dark moment. : )
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Wed Apr 01, 2020 9:17 am

For those still tethered here the CEA got into the 7000s and today upon getting his 3rd round of FOLFIRI its dropped to the 5000s
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

Claudine
Posts: 356
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Cea on the rise

Postby Claudine » Wed Apr 01, 2020 10:00 am

That's great news!! I hope the downward trend continues :)
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

stu
Posts: 1345
Joined: Sat Aug 17, 2013 5:46 pm

Re: Cea on the rise

Postby stu » Wed Apr 01, 2020 11:19 am

Phew . So pleased that it is going down . Big relief for you all .
How are things with you ?
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Thu Apr 02, 2020 9:56 am

stu wrote:Phew . So pleased that it is going down . Big relief for you all .
How are things with you ?
Stu


Rocky at best but dealing I suppose. I had to put my foot down recently had a complicated argument sparked by his own depression which led us down the path of if you want forgiveness its time to take the help you have and find it when its not available. He reluctantly agreed although have yet to see any progress on that front.... :|
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

stu
Posts: 1345
Joined: Sat Aug 17, 2013 5:46 pm

Re: Cea on the rise

Postby stu » Tue Apr 07, 2020 5:34 pm

It’s such a stressful time when emotions are stretched and amplified. It’s tough trying to meet everyone’s needs all the time . Take a wee while for yourself too . It keeps you strong .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Re: Cea on the rise

Postby Mohrfamily » Thu Apr 09, 2020 11:58 am

So new on the front. With everything DH has been putting me through lately he finally discussed it with the oncologist and his sending him to have his head scanned just in case cancer has spread there now. :?
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

Claudine
Posts: 356
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Cea on the rise

Postby Claudine » Thu Apr 09, 2020 1:09 pm

This must be a very stressful appointment, I really hope everything comes out clear! Just before his latest MRI, DH was telling me that he really did not want to go for fear of learning something bad. But cancer patients do not have that option, unfortunately... Well they do, but denial has never healed anyone. Fingers crossed you get good news from that scan XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: O/T -- An automobile mechanic in Northwest Ohio

Postby JJH » Thu Apr 09, 2020 3:02 pm

Mohrfamily wrote:... my stubborn husband with the stressing diesel mechanic job ..

This post of mine is totally off-topic O/T -- but I thought I would mention this because you said earlier that your DH was a diesel mechanic.

Here is my story. It goes back many, many, years, back to the time when I was at University.

At the end of my first year at University on the East Coast, I took the northern route to travel back home. This was from the East Coast via the Pennsylvania Turnpike, then to the Ohio Turnpike, then onward along I-80 to the far west. What happened around Northwest Ohio was that the warning light on the dash board of my old car turned red, indicating that my battery was not charging at all and that I had very little battery charge left.

I was terrified. It was the week-end, and I was wondering where on earth I could find an auto repair shop open, and what it would cost me to fix the problem (whatever it was). I didn't have much money at all. Just enough to pay for the rest of my trip back home.

I took the next exit from the Ohio turnpike and ended up in a small town south of the turnpike. I found a gas station there that was open and I asked the attendant if he could have a look at my car and see what was wrong. Fortunately, he said that he could, and he took my car into the garage and started looking under the hood. I was really scared, because I didn't have enough money to cover a major car repair, and I didn't know how long I might be stranded in this little town.

I was afraid that I might have to replace the generator and maybe some other components at a very high cost. I was in a state of despair.

Finally, the mechanic finished his analysis and told me what was wrong. I couldn't believe my eyes. He said that what was wrong was that the "brushes" on the generator were worn out and needed to be replaced. The generator was just fine. He said it was just the three brushes that needed to be replaced. He said that he could replace them then and there on the spot. He said that the price would be 25 cents for each of three brushes, and then the cost of his labor. It was beyond belief. I simply couldn't believe what he was saying.

This is why I will never, ever forget the name of that small town south of the Ohio Turnpike. The mechanic who repaired my car was one of the most honest and professional persons I have ever met. I have occasionally thought that I wouild go back to that place especially to say "Thank you", but I never did.

So, what I would like to ask of you is this: If you could convey to your DH that I have the highest esteem for auto mechanics in Northwest Ohio. I will never ever forget the kindness accorded to me when I was in such a state of despair.

Thank you.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

beach sunrise
Posts: 82
Joined: Thu Mar 05, 2020 7:14 pm

Re: Cea on the rise

Postby beach sunrise » Thu Apr 09, 2020 6:05 pm

JJH, what a wonderful heartfelt story!
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 39 guests