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Update on me and my CEA madness.

zx10guy
Posts: 274
Joined: Dec 2013

It's been a while since I've been on the board.  So I'll cut to the chase on where things are with me and maybe someone will run across my threads searching on our nemesis CEA.

 

Quick summary for those that are not familiar with my situation.  Since March of 2017, I've been chasing abnormal CEA numbers.  When I say abnormal, I mean WAY abnormal.  I went from 5.2 to 15.6 in 3 months at the start of this ordeal.  Fast forward to now.  My CEA is now at 84.7.  I had yet another PET scan and it's all clear.  My doc has literally thrown his hands up in the air and doesn't even know what to do at this point.  He's suggested I do a consult with Dr. Marshall as he is a clinical research oncologist.  He mentioned that my situation is definitely case study worthy.  All other blood work has been normal.  I feel fine.  Have gained back a lot of the weight I lost from the nightmare of a marriage I had.  Many people have said I look great for being 50 and I've been hitting the weights regularly.

At this point, I'm pretty much done and spent mentally.  It's been coming up on 4 years of this madness on top of the issus with my marriage/divorce.  I'm just looking to live life some what "normally".  I haven't had "normal" for so long I'm not really sure what that is any more.  So I'm opting to do nothing for the time being.  At this point, it's about quality of life.  And I haven't been getting it constantly stressing about test results.  If I go see Dr. Marshall, it'll be more constant stressing.  I'm sure my cardiac issues are a direct result of all the stress I've been under for so long.

Now there seems to be two documented people on the Internet that have had extremely elevated CEA numbers for a prolonged period with no cancer found.

On a positive note, my divorce is finally done.  I'm able to move on from that chapter of my life.  My daughter and I have bonded more despite what my ex was doing to us.  I've been out doing a bunch of different activities.  When the beaches opened back up, I was there every weekend except maybe 3.  Got to try out jet skiing.  I've picked up sailing.  Got ASA101 certified.  Ended up buying a boat a few weeks ago.  And dipped my toe into online dating.

My well wishes go out to all of you.

Trubrit's picture
Trubrit
Posts: 5335
Joined: Jan 2013

Let whatever is or isn't happening with the CEA, happen or not.  You may or may not ever find out why. If you do, then you will face whatever that is, at that time.  Now is the time to destress; from Cancer and from the horrors of your previous life.  Enjoy! You are alive, for who knows how long. You are NED, for who knows how long. You are single, for who knows how long, so enjoy it all. 

Well, that is my advice. 

It is good to hear from you; and don't be a stranger for too long.

Tru

zx10guy
Posts: 274
Joined: Dec 2013

Thank you Tru.  You've captured my thoughts exactly.

No offense to anyone here.  But it was good to have forgotten to check in to this place.  I was so busy with sailing that for once I didn't have cancer occupying my mind constantly.

SnapDragon2's picture
SnapDragon2
Posts: 399
Joined: Nov 2019

Yep, do YOU!!!

Are you referring to Dr. John Marshall in MD?

zx10guy
Posts: 274
Joined: Dec 2013

Thank you.  Yes.  I'm doing what I feel is best for me despite others thinking I should step up being poked, prodded, and baked (radiation from scans).

 

Yes.  Dr. John Marshall.

SnapDragon2's picture
SnapDragon2
Posts: 399
Joined: Nov 2019

I am looking to get a consult with him.  Is he back in office yet?

zx10guy
Posts: 274
Joined: Dec 2013

Ok.  Small world.  I don't know if he's back in office or not.  My doc just mentioned that I should go see him for a second opinion.  I told him I would think about it.  He said he would provide the contact info/referral if/when I want to pursue this.

SnapDragon2's picture
SnapDragon2
Posts: 399
Joined: Nov 2019

Last I heard a few months back he is still on sabatical.  The other onc that works closely with him does not do telehealth.  Its in office only.  So, thats out for me.  Not going into deep red covid territory right now.

Annabelle41415's picture
Annabelle41415
Posts: 6652
Joined: Feb 2009

Sometimes the numbers just get in the way, and I'm so glad to hear that the scans show nothing.  Getting rid of the stress (marriage) if that was a big cause of it in your life is a weight lifted, so I'm glad that you are feeling better about that.  Just keep doing what you are doing, being active, seeing your doctors and living life.  So glad that you are feeling well too.  Thanks for the post and hope you continue to do well.

Kim

zx10guy
Posts: 274
Joined: Dec 2013

Thank you Kim.

For once in a very long time, I finally feel I'm living life rather than just existing.

pamness
Posts: 525
Joined: Nov 2007

I am not a regular on this site anymore.   Diagnosed colon cancer 3a in2007 . My cea was always all over the map.  Not as crazy as yours, but 16 or so CT's proved cea not to be a reliable indicator of anything. Obviously, after 13 years, I am fine.  I gathered you are going to MD Anderson for another opinion  it wasn't clear. Anyway, my advice would be togo to a major cancer center for advice.  

darcher's picture
darcher
Posts: 289
Joined: Jun 2017

  My CEA was around 3 for the entire cancer treatment.  The high point was 7 and that was shortly after I ended chemo. Normal for a non-smoker as you know is 0 to 5. I did smoke which should have pushed it up to around 20 or so. That and the blood work showed perfect and it took a camera up the you know what to discover it.  Oh, and I bet my X (ninja) was craizier than yours and even that didn't raise the numbers. I guess it goes to show that the ol CEA isn't as a  good gauge as it's cracked up to be.

zx10guy
Posts: 274
Joined: Dec 2013

I've been saying CEA is a terrible test.  All the liquid biopsy type tests are showing great promise and are becoming very accurate.

I never smoked so that wouldn't be a factor in my situation.  Doc was thinking stress is causing it but not to the current number I have.

I seriously doubt your ex is worse than mine.  I do get there are worse situations than mine.  But mine is way up there to the point her attorney hates her.  Also, the independent mediator we used was siding with me only after knowing both us for a few hours.

Annabelle41415's picture
Annabelle41415
Posts: 6652
Joined: Feb 2009

My CEA was normal through the whole ordeal, so it's not very realiable for everyone.  A lot of doctors won't even do the test, because it is not always a good indicator.  It can change for a number of factors, and even if it does rise, or doesn't, is not a conclusive indicatation of cancer.

Kim

SnapDragon2's picture
SnapDragon2
Posts: 399
Joined: Nov 2019

"I seriously doubt your ex is worse than mine."

Not funny but funny!!!

Real Tar Heel
Posts: 140
Joined: Nov 2019

I thought CEA was bollocks as a marker at first. When I had a recurrence last summer, I took a look in hindsight. My CEA had been normal (below 3) until the end of chemo, when it rose to 4. I started to worry a bit. Then a scan showed several new tumors in the liver, the CEA was at 9. After the resection, returned to 1.6 which it was after my first surgery. For me, it seems to be a good indicator. At some point, the research will tell us why it works as a marker for some and not for others. Perhaps that will be a pathway to a cure.

tanstaafl's picture
tanstaafl
Posts: 1296
Joined: Oct 2010

Congratualtions on success however achieved and thanks for keeping us updated.

Since the underlying CEA protein is a carrier of epitopes, often the dangerous C15s selectin ligand identified with the CSLEX1 stain (tissue or serum), I suspect you are not carrying one or both of the binary CLEX1/CA199 responsive ligands and/or other mutations. 

As for cardiac issues, "plan B" mostly with natural biochemistry has been my best avenue of advance.  Magnesium, vitamin D3, natural anti-inflammatories, mitochondrial support, B+C in larger amounts, and 1/4 aspirin.  Thirty plus years ago, medicine was hawking things since proven to have dangerous side effects and low efficacy.   I really do need to watch the sugar, excess calcium foods, and weight more often as well as lack of cold water fish lately...

Tueffel
Posts: 154
Joined: Feb 2020

It is interesting what you wrote especially that this seems not to be textbook knowledge or better textbook knowledge in the US. 

 

My dad had 2 tumor markers: CEA and Ca199. What I learned here on this forum and in textbooks is that CEA might be a good indicator in some people (in my dads case both markers were elevated). For some people CEA is not, some had really high CEA suddenly, CT, MRI and PET and nothing ever showed. I read a study that simply says that imagining is the important factor not CEA level. 

Trubrit's picture
Trubrit
Posts: 5335
Joined: Jan 2013

I had a clear CT Scan, but my CEA was jumping up and up. It took a PET to light up the liver tumour the CT missed. 

I wish it were all an exact science. 

Tru

 

SnapDragon2's picture
SnapDragon2
Posts: 399
Joined: Nov 2019

Thats the sad part, its not an exact science and could never be because everyones cancer biology is different.  Drs can not do the homework for you is why there is SOC and you have to be your own advocate.  You as a cancer patient have to do your homework and dig for info that would pertain to you and follow that for better discussions and outcomes with your drs.  Expanding the bloodwork beyond SOC chem14 and cbc is so very important to catch potentials ahead of scans.  CEA should be used with other panels for a better picture.  Be your own advocate.

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