CEA jump, not sure what it means but scaring us.

[Nodak]

I'm just putting an update out here on my husband if anyone has a comment or advice for us. We just got back from Mayo Clinic Rochester, MN. Chemo has been harder for him to recover from lately and we've been investigating the different new treatments, trials mentioned here. His CEA had been around 70's for months but 4 weeks ago jumped up to 203. When he was tested at Mayo today it jumped to 898. The doctors say it could be new tumors that are resistant to the chemo he is currently on. They advised us to wait until next month for the scheduled 3 month CT scan. We trust these doctors, they seem very up to date with anything we brought up to them. Will hope for a good CT scan or a good plan to attack anything new that comes up. This website gives me so much info and good insight into the many different bumps on the road with cancer treatment. Thank you to all who submit this info.

[stars9979]

So sorry you have to be on this scary journey. I am fairly new and just starting, but from what I have been told CEA isn't always a tell tale factor as it is influenced by a lot.

I wish you the very best and hope others can help also

[dianetavegia]

Well I disagree with the doctors but they may think with your husbands quick recurrences and such super high jumps that a month won't make a difference. 70 was already over 20 times normal. 900 is 300 times normal and going up quickly.

I'd DEMAND a PET scan now. Not a month from now. NOW. Your local onc can order that and with the spike in CEA and his history, I doubt any insurance company would deny it.

I hate to sound like Debby Downer but I've been reading or posting on this forum for over 5 1/2 years and I've seen people die very quickly when they were 'under treated' or told to 'wait and see'. The worst cases were a woman on Medicaid and a guy who worked at the VA and using their services.

I'd rather push for a test and get good news than wait and get bad news, only to question decision for the rest of my life.

Wishing only good reports for your husband,
Diane

[Bev G]

I am so sorry you are going through this. I agree with Diane. If those were my numbers I would not be waiting until August for a scan. Although there can be transient and insignificant rises in CEA due to local inflammatory changes, the numbers your DH is experiences is very unlikely to be accounted for by this. I am sorry to tell you this, but I think it best to get a look now, and move forward rapidly with whatever needs to be done.

Best wishes to you,

Bev

[elise]

I agree with the gals above, a big jump in CEA is an indicator for many people. I'd want that CT pushed forward (as long as CT is revealing for him) or a PET.

For me, CT did not reveal a new tumour but PET did.

Good luck,

Elise

[pog451]

Sorry to say this, but Im with the others here. CEA changes and peaks can sometimes be explained by other factors, its true, but not at the levels you DH has - That's almost certainly cancer.

Get scanned now.

[Nodak]

Thanks so much for your input. I called yesterday and he is having his scan Friday so we will hope for a plan to deal with whatever happens. I feel like you are my friends on this website and I appreciate it so much.

[ANDRETEXAS]

Sometimes I think there are more than friends here. They know what you and going through. and they will tell you what they really think, not what you want to hear. I think the anonymity helps in many cases, but the results are the same.

[ColOrPan]

I am so glad you got the scan moved up!

[Nodak]

My DH had his scan last Friday and we reviewed with the doctor today. The numbers were right, increase in liver tumors and especially in the lungs. Also one tumor that is possibly growing on the vena cava that they will monitor closely they say. That might have been the cause of his swelling feet and leg. He will be switched to Stivarga, starting tomorrow as insurance approved it right away for him. Had anyone been on Stivarga for long? He has tolerated the first chemos pretty well but we're worried,of course, with something new and he is not as healthy as when he first started this path. He has been having pretty high blood pressure readings. Lots of articles about the terrible side effects. We will hope for a good result from this one. With the KRAS mutation I don't think there a many options left for chemo other than they might try the first Folfox/Avastin again if needed. We have trips we want to take. Will he be feeling up to it on this treatment? If anyone has any experience with this one I would love to hear any advice. Thank you.

[dianetavegia]

Nodak, I wouldn't make any plans for trips unless the planning is something that comforts and gives hope to your husband. What I would be doing is contacting hospice so you can be prepared for any pain or issues he may face in the next months.

With the tumors returning, growing and appearing during chemo and numbers going up as quickly as they are, I believe your husband has very little time left. Hospice is not just for last days..... I remember one of our members had hospice come in that morning, he went grocery shopping later that day and made a big pot of Chicken Soup for his families supper. Hospice can give you GOOD days and pain free days and good memories.

I'm sorry things are going so badly for your husband, but do realize that chemo doesn't CURE colon/ rectal cancer so Stivarga is just a possible time extender.

Talk with your husband. Would he rather have 5 months of feeling okay (with hospice's help) or 6.4 months of feeling awful? This drug sounds like the treatment can, in some cases, be worse than the disease itself.

People who took Stivarga lived an average of 6.4 months, compared with people given a placebo who lived an average of five months, the FDA said.
The most common side effects of the new drug included: weakness, fatigue, loss of appetite, diarrhea, mouth sores, weight loss, infection, high blood pressure and changes to the voice.
Stivarga was approved with a boxed label warning of the possibility of severe and fatal liver problems, the FDA said.

[Nodak]

DH started Stivarga on Thursday, 4 pills every day for 21 days, then a week off. Friday night and Saturday started have bad headaches, I started taking his blood pressure, 173/114 was the hightest, and fluctuated a little but stayed around there. Ibuprofen helped the headache but the readings didn't improve much. I got ahold of the on call oncologist Saturday and he said to take an extra blood pressure med until this morning when we talked to his regular oncologist. He told him to hold of on the Stivarga today and he and my DH will talk tomorrow morning about how to proceed, change dose of chemo or maybe change his blood pressure meds. The feet started to swell again also, so I'm worried about the tumor that is growing on the vena cava, it may be causing problems for him. We will see what they work out for a plan tomorrow. I'm hoping he can start a reduced dose as I have read that several times on this page.

I realize how sick my husband is but neither of us is giving up hope that he will stabilize with one of these drugs and have some good quality of life still. Our doctor has never said any kind of time frame for survival.

[Nodak]

Hello I'm just putting an update out there on my DH. He has been on Xeloda along with Oxaliplatin, attempted the third cycle Friday but after the infusion portion couldn't get the nausea, vomiting under control - had to stay overnight and receive IV fluids. His Platelets have dropped to 63, Bilirubin is elevated to 1.8. They said that is not very high but ordered an ultrasound and are holding off on the Xeloda until they check his bloodwork again tomorrow morning. I know that is not uncommon, his has just never dropped this low before. He can't seem to shake the nausea and is having trouble eating much. His normal positive attitude is shaken. We're hoping the ultrasound doesn't show anything worrisome. His tumor is pressing on the vena cava but they said the symptoms to watch for are swelling in his legs and they have been pretty good. I'm not sure what they are looking for, maybe some kind of blockage in the liver? He also had decreased dark, urine output - but hadn't shared that with me at all until at the doctor appointment. Hoping for a good report and he can continue the Xeloda tomorrow.

[stars9979]

Nodak,

Im so sorry you and your husband are having these issues. I really hate cancer and everything that comes with it. While in the hospital focus on making memories, reliving old ones, and enjoying one another to take his mind into a better place.

Also maybe even loom into a voice recorder locket on amazon something you both can have with positive messages to one another to play on those tough days, and even days where you have errands to run for each of you to play in private.

Thank you for keeping us posted.

Wishing you both lots of loves and laughs and comfort on your journey

[dianetavegia]

The chemo your husband is getting is what is given to Stage I- III. It sounds like a last ditch effort.

Please remember that oncologists treat with chemo.
Radiologists, with their gadgets.
Surgeons cut with intent to remove and cure.

All the big guns chemo have failed your husband. Please reconsider speaking with hospice. At least hear what they have to say.

The combo drugs your husband is getting is called FOLFOX when it's all in IV form.