Concerned,,,,Elevated CA199

Please feel free to read, share your thoughts, your stories and connect with others!
Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Concerned,,,,Elevated CA199

Postby Eleda » Wed Sep 05, 2018 8:01 am

Just got my bloods back and still in getting chemo but have had a jump in ca199 from 8 to 17,,, the he understudys seems unconcerned,, but I am,!!!!!!!!!!!!!!!!?!,, no increase in CEA,,, back downtown 3 from 4 last week,,,
I feel im not a good predictor for cancer as my markers as my pre DX CEA was 4.4 don't have pre CA199
Can anyone alay my worry please,,, :( :( :( I'm on chemo session 5
1 folfox
2 f5fu solo( due to allergic reactions)
Back on 2 folfox again

Thanks Adele
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Concerned,,,,Elevated CA199

Postby O Stoma Mia » Wed Sep 05, 2018 9:21 pm

One question: Does your bloodwork show results for liver enzymes? AST, ALT, etc?

If so, were your liver enzymes within the normal range?

Note: Even though there is a rise in your CA 19-9, it looks like the value is still well within the normal range:

https://emedicine.medscape.com/article/2087513-overview

Also, what beverages do you typically drink? Some of them might affect CA19-9 levels:
https://www.cancercompass.com/message-board/message/all,89296,0.htm
Last edited by O Stoma Mia on Wed Sep 05, 2018 9:43 pm, edited 1 time in total.

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Concerned,,,,Elevated CA199

Postby lpas » Wed Sep 05, 2018 9:40 pm

CEA and CA19-9 can be all over the place during chemo as a result of inflammation and dying cancer cells. Mine rose significantly. If I recall correctly, my CA19-9 was 37 when they tested immediately after my 6th and final session of Oxi. It slooowly came back down in the weeks and months thereafter. Try not to worry (easier said than done, I know)!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

O/T: Welcome to the 1000 Club

Postby O Stoma Mia » Wed Sep 05, 2018 10:20 pm

lpas wrote:CEA and CA19-9 can be all over the place during chemo as a result of inflammation and dying cancer cells. Mine rose significantly. If I recall correctly, my CA19-9 was 37 when they tested immediately after my 6th and final session of Oxi. It slooowly came back down in the weeks and months thereafter. Try not to worry (easier said than done, I know)!

@lpas -- I just noticed that this was your 1000th post. It was nice to see you on-line again after all this time. You are truly the poster girl for relevant, effective pro-active research on Stage III CRC. Take care, and best wishes for your onward journey.

In November 2014, lpas wrote:Hi all,

I'm newly diagnosed with a large colon mass and tentatively scheduled for a bowel resection on Tuesday (pelvic and abdominal scans appear to be clear). Have been researching furiously, trying to learn anything and everything about treating this disease ...

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Concerned,,,,Elevated CA199

Postby Eleda » Thu Sep 06, 2018 1:21 am

Thanks iPas
The fact my bloods are excellent is what concerns me more, ( plentys of land liver and Irish black pudding and meillife honey :D :D WBC IS 4.7 ATM

OSM, all are excellent liver is good billirubin is 8 good,,, CRP is low,,, I drink about 1 coffee a day and sparking water other than that,,, my week off chemo I might have a glass of wine or 2
All was the same at DX all perfect bloods which Led me to my then cancer DX in my head ....
( process of illimation)
because all else had to b ruled out so this is why I'm so concerned,,

( I understand why some hospital s now do not tell patient their levels)

But to me 8 to 17 jump is substantial and a worry to me but not the understudy apparently :( :(
I'm n with oncologist next Tuesday but I'll not sleep and worry till I can make sense of it
CEA is also ok prior to TX 4.4 after surgery3. 4. 3
iPas
I had my whole musorectal envelope removed because I'd 6 lymphs affect and one remaining after chemoraiation therefore he rememoved everything and had a straight anastomosis at 3cm aboveAV all successful thus far,,,
so the toumor and all around it is gone so nothing to break up as such !!!!

Thanks for Ur replies
Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Concerned,,,,Elevated CA199

Postby rp1954 » Thu Sep 06, 2018 2:14 am

The CA199 can definitely react to cumulative cellular and organ damage after some initial rounds of heavy chemo, and go streaking higher, 100 - 150 - 200 units by the end of cyclical chemo [in 6 months]. Many other blood panels are whacked out by chemo too. Each can follow its own path higher, then lower in the year after cyclical chemo.

This is a major difference between immunochemo and regular chemo. My wife did not have the CA199 runaway due to chemo and it remained a useful marker outside of interferences, like unmeasured inflammation, during chemo.

However, from all that I've seen and read, where continuous immunochemo during the first year may be better for some kinds of "hopeless" stage IV patients, vs the first 3-4 months of cyclical chemo might be better for those stage II - III patients who kill off the last of any residual cancer cells, especially those that don't have a clear CA199+CSLEX1 tissue indication for cimetidine.

The most valuable CA199 data for stage II-III colon cancer in the first 6 months are:
1. at diagnosis
2. before any treatment or surgery
3. after any treatment or surgery
4. right before chemo
5. at the end of heavy/cyclical chemo (it's probably going to be hiiiiiiiigh)

After that, when CA199 peaks and begins falling, perhaps in 1-2+ months, CA199 is a useful marker again. If it repeatedly climbs then, that's not good. In my wife's case, we were able to identify a stable CA199 during immunochemo, then a runaway due to too low 5FU-LV, CA199 tripling over two months or so, club it down again, and do another surgery. Your CA199 right now is likely increasing and unstable due to the cumulative cyclical chemo.

A good, more useful data element to report with: [mo/yr] CEA, CA199 (later), MCV, ESR, hsCRP, WBC, liver panels
Last edited by rp1954 on Thu Sep 06, 2018 2:33 am, edited 3 times in total.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Concerned,,,,Elevated CA199

Postby Eleda » Thu Sep 06, 2018 2:28 am

Thanks RP,
I went back to my original hospital that did my first colonoscopy for my bloods to check, but no CA199 WERE DONE,,, ILL ask on Tuesday but as far as I'm aware first CA199;was after surgery therefore after chemoraiation so I have now no start point to which to compare or relate to present CA199
I'm going to run with Ur idea of cummilitive cell damage that possibility wouldn't intefear with the blood report as such,,, ie CRP and liver WBC etc as all are normal ATM

Thanks again
ADELE
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: O/T: Welcome to the 1000 Club

Postby lpas » Thu Sep 06, 2018 10:08 pm

O Stoma Mia wrote:
lpas wrote:CEA and CA19-9 can be all over the place during chemo as a result of inflammation and dying cancer cells. Mine rose significantly. If I recall correctly, my CA19-9 was 37 when they tested immediately after my 6th and final session of Oxi. It slooowly came back down in the weeks and months thereafter. Try not to worry (easier said than done, I know)!

@lpas -- I just noticed that this was your 1000th post. It was nice to see you on-line again after all this time. You are truly the poster girl for relevant, effective pro-active research on Stage III CRC. Take care, and best wishes for your onward journey.

In November 2014, lpas wrote:Hi all,

I'm newly diagnosed with a large colon mass and tentatively scheduled for a bowel resection on Tuesday (pelvic and abdominal scans appear to be clear). Have been researching furiously, trying to learn anything and everything about treating this disease ...


Thanks so much, OSM!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Concerned,,,,Elevated CA199

Postby heiders33 » Fri Dec 14, 2018 7:41 am

Piggybacking on this post, I finally had my CA19-9 tested for the first time. I'm in the middle of chemo so not a great time to start, but I wanted to at least get it started so I could compare what happens after I am off chemo for a while (sometime next summer). Right now it's at 13.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy


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



Who is online

Users browsing this forum: No registered users and 118 guests