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Clear PET/CT....but CEA rising.... How???? Why???..

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Brief background: Had Cyberknife (CEA a little over 10 at this time) to right lung met in Oct. 2010. 4 weeks later developed radiation pneumonia in Rt. lung with a few questionable "spots". 2 different team of docs had different opinions about this. One said ALL pneumonia related..the other said pneumonia in lung but spots were cancer. After steroid treatment for pneumonia it eventually cleared up and all spots gone. April 4th,2011 had PET/CT that showed all clear...no nothing..nil...nada....showing on scan...declared NED. During this healing period my CEA had been declining and got down to 5. On April 6th....2 days after PET... I got another CEA done... it was like 7.1..what??? 2 days AFTER a clear scan????? Ran another CEA a week later... now 8.7.....Ran another CEA a week later...now 9.6. I have been on maintenence chemo of 5FU bolus and Leuco weekly x3 weeks and off 4th. Stopped all Avastin 2 months ago. We went thru the "other" possibilities if not cancer related.... possible benign tumor??? If CEA gets over 10 that is highly unlikely..almost there now.... no intestine probs like colitis, etc...no diarrhea... infections??? inflammation??? always possible but with CEA climbing at this rate its unlikely... liver probs?.... nope..a little fatty tissue on liver but clear and BUN/Crea levels fine. Onc said maintenance chemo must have stopped working and now he wants to wait till Monday and run another CEA..if its the same or higher...he wants to switch me to a new chemo. I have only ever been on Folfiri then the maintenance. How can he want to start me on a new chemo when the ONLY sign of cancer activity is CEA. There are not even any questionable areas on scans. He says sometimes it takes a while for the tumors to show up on the scans.... I know this....but this has NEVER followed suit with me. ANY time my CEA rose even by 1.... recurrance was evident. I physically feel great...been eating a good diet...even gained a few pounds. My lower back has been bothering me off and on but usually a trip to the hot tub takes care of that. There is one thing...don't know if it could be a factor or not... Several months ago I started getting sores deep in my nasal passages...I mean in a place where a finger can't reach...sorry to be gross....(Buzz, ya better put your cookies down..LOL) and would blow out scabs that had to be removed with a tweezers because thats how large they were. That is why I went off the Avastin...we thought they were not healing because of Avastin. After several months of NetiPot nd Neosprin constantly in my nose(per ENT doc)who had already cauterized it.. to no avail.... it cleared up...I felt clear..no more bleeding..no more scabs! I mean this was just recent. I was so relieved....BUT...dang..always a but.... I have been feeling a little stuffy lately but just thought allergies....until last night.... after several sneezes I blew my nose and OMG!!! I felt a blockage in my rt nostril...blowed more....I'm so sorry this is gross....a huge and very very thick scab was trying to come out...I could not even blow it out...got the tweezers and pulled it out...no wonder I felt stuffy!!! the other nostril had one too but half the size..... and just when I thought that was all over....RIGHT! There was not much blood that followed which surprised me. Normally when those scabs come out the blood just drips. Ths got me thinking..... could I have empitigo(sp?)... or infection of some sort there...could this be affecting CEA in an way??? and that brought me to you guys..... I sure need some input on this...its driving me crazy..and thats a short trip these days!!! LOL.... Just when I think I'm on vacation...BAM! Thank you in advance and ya'll take care.

Jennie

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Thats ok, my stomach is getting much stronger hanging with you...LMAO, J/K sweetheart..you know I love ya...
CEA increase is normally spot on for me , but as he said it may be so minute' that it is not visible, or hopefully nothing at all simply some type of infection but...Mine on the other hand was 1.4 cm before my CEA started up so he may be thinking that he is wanting to change the chemo and see if it drops the count back down...Don't put much thought into it until there is something to think about...right now there isn't......love to ya, buzz

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

Now don't go borrowing trouble. You asked for opinions so here goes:

In the big picture, your CEA is really not that high so my thoughts only, I would want to know more specifics before jumping in with the big guns chemo again. He wants you to start chemo again without knowing specifically what you are dealing with. Is the cancer still there and if so where? Going in blindly to treat cancer that may or may not be there? Don't know much about cyberknife but could it be that the small tumors that were treated are shedding neucrotic tissue? George's CEA jumped over about a couple month k period from around 20 something to close to 200 so we knew specifically cancer was marching forward rapidly. George had been on maintenance, IV of 5FU and Avastin, for over a year so he had a pretty good run at it. A few treatments of CPT-11 and we are down to 19.

As far as your nose goes, is it blood clots or scabs. The blood clots in the nose can be pretty nasty. Perhaps another go around with cauterization is in order. Of course when you pull the scab it produces lots of blood so the vicious cycle starts and it doesn't heal. Nana2's Jim ended up in the ER from this stuff and had to have his nose packed so be careful.

Take care and I hope this makes sense!

Love ya - Tina

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I'm sure about ! but why don't you ask for ct scan to stay more tranquil ? if scan is negative too you can be pretty sure about it's nothing!.
Hope it helps , I pray for a soon drop of this CEA!.
Hugs!

RickMurtagh's picture
RickMurtagh
Posts: 590
Joined: Feb 2010

Jennie,
CEA can be such a fickle thing. Mine has not budged one point, yet I have lots and lots of tumor involvement and one tumor described as massive.

Sure, it is something to consider and you should definitely tell your doctor of any new symptoms or even concerns. Let's face it, pulling scabs from our noses with tweezers is just regular stuff for us, but don't worry yourself silly coming up with new tumors or involvement, your doctors will provide plenty of that when/if they become a reality.

Be at peace and enjoy your vacation!

Peace,
Rick

PS you might try hemostats for grabbing those snot covered scabs than tweezers - the ends are typically blunter than tweezers and you might find them more comfortable and safer. Just watch for the nose hairs, they can be really painful coming out when pulling on those snot clots!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I was actually eating ice cream with chocolate topping, (yeah I know, but its good) and out of the blue...BOOM another boogy story...OK im either gonna quit logging in while Im eating or simply quit eating...Its time to be fasting anyway isn't it ? LOL...........buzz

tanstaafl's picture
tanstaafl
Posts: 1302
Joined: Oct 2010

That CEA value is moving. There is other blood test values, a series of MCV readings, that the oncologists (or anyone who read the papers) are supposed to be able to consider about whether a fluorouracil-folate based treatment is losing effect.

Our own strategy has been to attempt to fight microscopic clusters, seedlings and micromets with the least onerous treatment, find promising low toxicity biochemical therapies, and plan that surgery, or other definitive tx, will still be available for any larger stragglers or recurrence.

Your ailments could mean many things. You might want to consider a nutritionally oriented doctor, whether ND, MD, or DO. I've noticed here, and in various literature, vitamin deficiencies are common in CRC, especially post op, and during/post chemo.

My wife had decades long standing bone and back pain, that disappeared last year when she started taking substantial vitamin supplements, including vitamin D3. Her vitamin D blood measurement was still marginally insufficient after months of D3 supplement, first 16,000+ iu then 11-12,000 iu daily supplement. We measure and get professional advice.

We've used high dose vitamin C, K2 and glucosamine along with minerals to ensure collagen formation whether for sores, nosebleeds or large wounds, with glutamine for mucous tissues. Excess blood fibrin and clots might need other things like, high gamma E complex, fruit/grapeseed extracts, B3, or fish oil among others. Again, you should see a knowledgeable care provider for diagnosis and detailed treatment.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

i never have understood the whole cea thing.what i do know is its not a good marker for me.now that i have had a recurrance i am keeping on top of things more.i had my cea checked in aug.2010 and it was 1.8 good to go.then my cat scan in jan.2011.just 5 months later my cea level was 1.5 and cat scan showed 3 spots on my liver and 2 spots on my lung(what the f!@#)soooo cea is not a good marker for me and i dont even know why they bother.they should not just rely on blood test alone.i believe we should have cat scans and pet scans and whatever else scans there are to be sure and safe.i truly believe if i would of had some kind of scan at the 6 month mark instead of just blood test maybe just maybe i would only have spots on my liver and it would not have spread to my lung.hope you find out soon what is going on with you and let us know...Godbless...johnnybegood

stratplayer's picture
stratplayer
Posts: 41
Joined: Jul 2010

My CEA level has never changed. Even before chemo/radiation it was less than 1.
I do not remember any of my doctors explaining what CEA meant.
It was only after I found this web site that I heard of CEA.
I asked one of my Onc and he said it doesn't always give good indicators.
My surgeon told me to stop using Neosporin on my raw butt.
Over use is not good.
This is just my opinion and facts.
Have a great time, every second that you are alive.

Mickey

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

and had never been offered a scan during those 2 years after initial surgery, after this last surgery I asked that one be done at 6 months. Had chest abdomen and pelvis done....I have already setup another in 6 months...At that time if there is nothing again I will go to a year...Its all about your own wishes. My Onc only recommends treatment options for me, she doesn't tell me, she asks what I think.....I can understand that no one knows the exact science, but seems that Onc would be telling me what needs to be done and then me say yay or nay, but it seems they are a little standoffish, like they either aren't sure or don't want to say this is what I want you to do.....seems as if they won't commit...

So, take full control of your life and maybe ask what they recommend then if knowledgeble enough, tell them what you'll do and what you won't do. Inevitably I guess its up to us. Im not a Dr or Oncologist but hopefully before its to late I will figure out what I need to do, because it sure doesn't seem like anyone else gives a rats a$$ other than making sure the bills get to me on time..............OK, all done......buzz

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

I doubt that the nose bleeds could have anything to do with the rise in cea. But in this crazy cancer world, I guess there could be a relation. Awesome, totally awesome, bloody bugger story. Loved it. I had my first nose bleed in many months last night. I'm not sure if it was from the trial drug or what.

I'm really not sure what to make of clear scans and rising cea. I guess your onc will put you on folfox? It seems like you would want more evidence before you went that far. Tough decision. Good luck. I'm sure you will figure out what is the right path. You ******* rock and you always figure out a way forward.

snap, crackle, POP

Roger

AnneCan
Posts: 3692
Joined: Oct 2009

I am sorry for this. I hope it gets figured out soon.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Just when we think we have it figured out!

CEA has always been a very good indicator for me. But my onc still puts more faith in scans.

01FEB my CEA had stayed down at 2 for months, and I had a good PET/CT, so I was switched to maintenance (5-FU plus Avastin - I just got to drop the Irinotecan). My CEA started climbing on maintenance. 3 cycles of maintenance and I went from 2 to over 6. I had an extra 3 weeks off before starting chemo again yesterday. My CEA went from 6 to over 11 during that break. Another PET/CT last Tuesday showed continued lymph node involvement plus spread to new nodes.

I don't mean to be a downer, but is it possible that you have progressed on maintenance chemo too? (Odd thing - I keep having lower back issues, but my onc says he doesn't see how they are related. Who knows?)

Personally I would want to have another CEA check, and would also ask to do another PET so you know what you are dealing with before changing up the chemo. What if it is something resectable? Most of the time this is so slow growing that you don't want to scan again too soon, so you might have to wait a few more weeks or a month for that.

dp5
Posts: 3
Joined: Apr 2011

My husband was dx in 07 stage iv after radiation/chemo, surgery, chemo etc. . . on and on he had no evidence of disease except for gradually rising CEA's. PET scan after PET scan showed no new tumors, even though he had growing pain in his rectal area. Finally we talked to his radiation oncologist who said some soft tissue recurrent tumors were more easily seen on an MRI rather than a PET. So in February of this year he had an MRI and sure enough the tumor was very visible. If you feel that something is going on or you have pain or discomfort continue to bring this to your doctor's attention. Good luck to you.

dp5
Posts: 3
Joined: Apr 2011

oops didn't mean to post twice sorry
trying to remove hope it works

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