Please someone, tell me it's working

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midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Please someone, tell me it's working

Postby midlifemom » Wed Sep 09, 2015 9:48 pm

For the past three months my cea has been slowly rising - 2.9, 3.9, 3.6, 4.3, 6.8, 7.4. This corresponds with lung things showing up and growing.

I had two infusions of avastin and today's cea was down to 6.2!

Ct next week - but perhaps this drop in cea indicates avastin is working?

Today was chemo and I feel like crap. Would be easier to deal with if I know chemo is doing its job.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

Sams wife
Posts: 753
Joined: Sun Jan 11, 2015 2:49 pm

Re: Please someone, tell me it's working

Postby Sams wife » Wed Sep 09, 2015 10:44 pm

I hope it is!! No insider info but I hope so. sorry you feel like crap :cry:
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

Nik Colon

Re: Please someone, tell me it's working

Postby Nik Colon » Wed Sep 09, 2015 11:48 pm

My CEA went from 4.9 at start, slowly went down on folfox, 1.2 after surgery (or was it right b4) then up to 4.7? or so after iri, so idk.

Hopefully all looks good on upcoming scans. Try not to worry until you find out. Best wishes

I know iri can raise cea at times, not sure how long, but it happens.

User avatar
LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Please someone, tell me it's working

Postby LeonW » Thu Sep 10, 2015 12:28 am

midlifemom wrote:two infusions of avastin and cea was down to 6.2


That CEA marker may be working for you; I hope it is.
Had dropping CEA from second infusion of Avastin too - see my sig. When it started dropping, onc found that promising and indeed, follow up scans showed shrinking mets. That's liver mets in my case. Hope your lung mets react the same.

Yeah, chemo is crap, but god-sent if it works . .
I hope your scan next week will confirm.
Keep up the spirits

Leon
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

rp1954
Posts: 1857
Joined: Mon Jun 13, 2011 1:13 am

Re: Please someone, tell me it's working

Postby rp1954 » Thu Sep 10, 2015 1:54 am

You're checking with surgeons about VATS etc, right? You want to get locally curative surgery if neessary / possible, and not all centers/surgeons are equal. Did you get any CA19-9 data to improve your ciimetidine estimates?

You've probably seen my comments on better (more) blood data. We don't have much experience on the board with lung mets but some panels may show the improvements, if tracked closely and monitored for inflammation.
Last edited by rp1954 on Thu Sep 10, 2015 3:14 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

stu
Posts: 1614
Joined: Sat Aug 17, 2013 5:46 pm

Re: Please someone, tell me it's working

Postby stu » Thu Sep 10, 2015 1:56 am

Hi. Straight from my mum' s oncologists mouth" they look for an initial downward trend". After that they know chemo itself can affect readings.
I would take it as a good sign at this point.
Hope your feeling a wee bit better today.
Kind regards
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 .

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Please someone, tell me it's working

Postby midlifemom » Thu Sep 10, 2015 3:19 am

Thanks all for your responses.

I have asked about surgery, biopsy, VATS, AND RFA. Was told by Sloan and local onc the lung spots were too small. (Told this by oncologists). Dr. K at Sloan was against cimitidine and it upsets my stomach anyway. If having surgery, I will try again. Never got the ca-19. Was busy yesterday's visit asking for MSI status.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: Please someone, tell me it's working

Postby cathy123 » Thu Sep 10, 2015 10:26 am

Crossing my fingers the lower Cea means tumors are shrinking!
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Please someone, tell me it's working

Postby midlifemom » Thu Sep 10, 2015 10:44 am

cathy123 wrote:Crossing my fingers the lower Cea means tumors are shrinking!


Oh, me too! Thanks!
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

rp1954
Posts: 1857
Joined: Mon Jun 13, 2011 1:13 am

Re: Please someone, tell me it's working

Postby rp1954 » Thu Sep 10, 2015 12:36 pm

The reason I'm poking at this is that if the chemo is only partially successful, say wipes out one or some, shrinks others, you might want to have your surgical ducks in a row, ready to go right after the nadir, or even coming into whatever "surgical range" is available with a particular surgeon. We've seen a huge variation on surgery practices for lung mets on the boards, so I'd be finding the best potential sites, drs and potential offers now. Starting to shop around after a nadir takes too much time to be optimal and might lose a surgical offer.

I know you struck out on cimetidine tolerability with Folfiri, earlier. There has been some irinotecan-cimetidine intolerance showing up and cimetidine might be ok without the iri-.
If you are headed for surgery, the cimetidine tolerance is especially important in the weeks between stopping avastin/irinotecan and surgery (some papers show 5FU use closer in, even up to surgery). Since you are CEA posiive and Kras mutant, I'd really check my CA19-9 serum while with tumor load, and maybe the old tissue samples too, for the cimetidine question long term if you can stomach cimetidine while off iri-.
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

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

Re: Please someone, tell me it's working

Postby lpas » Thu Sep 10, 2015 1:16 pm

Ugh. Such a catch-22 that you have to sit around waiting for lung thingies to grow before you can have them removed.

The CEA drop definitely sounds like a good sign to me. I hope you're feeling better soon.
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

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Please someone, tell me it's working

Postby Lee » Thu Sep 10, 2015 2:12 pm

When I was on chemo, FOLFOX, my CEA did rise. I was told this sometimes happens. CEA is picking up a protein that a dieing cancer cells are emitting. They only did a blood test once while on chemo and it did go down after I finished.

Butt, I was not an Avastin, hope this helps.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!


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