Really worried. Stage 4 with increasing CEA despite of chemo

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Mercy110
Posts: 114
Joined: Wed Aug 16, 2017 12:13 am

Really worried. Stage 4 with increasing CEA despite of chemo

Postby Mercy110 » Fri Aug 31, 2018 9:08 am

I have shared my mum’s situation before but there are some inputs today. We have met the oncologist as she finished her first round of folfiri on 20 Aug. We were supposed to hear some good news such as lowered CEA, but the marker turned out higher then the one before chemo. Now it is 22, which broke the record so far. The onco recommended my mum to go for folfiri one more time then see how does the CEA respond. Onco also compared the x-ray of lungs for mum and discovered the situation seems bit better after the chemo, which made us even more worried about how did the marker climb so high.

Last time we have used Folfox with Avastin while we decided not to use Avastin this time coz it is self-financed. We are now considering shall we add Avastin back. What worried us the most, however, is that folfiri seems not helpful. This is the first t8me of her to use folfiri and she did experience some tough time after chemo (without diarrhea though). If folfiri is not working, then we don’t have anyway way out but keytruda, which is extremely expensive in Hong Kong. Seems that no more chemo way out...

Thanks for read8ng, any advice appreciated.
My Mum (age 56), NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA: 217.3, pending treatment


WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

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Jack&KatiesMommy
Posts: 628
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Really worried. Stage 4 with increasing CEA despite of chemo

Postby Jack&KatiesMommy » Fri Aug 31, 2018 9:27 am

Do you know if your Mom is MSI or MSS? Have you had any testing done on her mutations? I ask because I was in a dire situation (look at my history. Because I am MSS my oncologist didn't suggest Keytruda since it doesn't normally work for MSS. HOWEVER, when Folfuri stopped working for me, we had my tumor tested via Foundation One and it turned out that my tumor had 11 mutations. Because my tumor had a moderate mutation burden Keytruda worked for me. My CEA has gone from 60 to 1.8 this week. The side affects are minimal compared to chemo....if there is a way to afford it or to get financial assistance if she is MSI or MSS with at least a moderate mutation burden, trying Keytruda may help her.
Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Really worried. Stage 4 with increasing CEA despite of chemo

Postby mhf1986 » Fri Aug 31, 2018 11:52 am

Vectabix (aka p-mab) has been working well for DH since May of this year. Doctor added partial dose of Irinotican in June and it's helping too but producing a "gruel-like" diarrhea in his ostomy bag we are trying to manage with Imodium. I didn't see the Vectabix in your signature so thought I'd mention it.
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

rp1954
Posts: 1536
Joined: Mon Jun 13, 2011 1:13 am

Re: Really worried. Stage 4 with increasing CEA despite of chemo

Postby rp1954 » Fri Aug 31, 2018 1:28 pm

Mercy110 wrote:. If folfiri is not working, then we don’t have anyway way out but keytruda, which is extremely expensive in Hong Kong. Seems that no more chemo way out...

You might not have any oncological society accepted or regulator approved way out but keytruda, skipping over stivarga or Lonsurf, options with typically lots of side effects and low success rates.

There have been multiple, important technological avenues earlier that they didn't discuss, and probably have no informed inkling of an idea about them either:
1..Rolle's laser lung surgery, somewhere overseas, mostly Germany.
2..Carbon ion beams, Japan, are probably the highest therapeutic ratio radiation described, but are still more limited on tumor burden quantity than 1.
3..Lin's ADAPT therapy, Xeloda + celecoxib. It really needs more adjuncts for more cancer inhibition effects and easiest tolerance but might have been a good choice even after several rounds of Folfox.
4..Metronomic, immunochemo. Can include or modify #3 and can be modified for Kras mutation(s). Probably can include some Avastin but we haven't needed Avastin for cell kill. Even limited forms of metronomic, immunochemo with comfortable amounts of oral 5FU drug have succeeded in some percentage of late term cases after Folfox and Folfiri failed. The more advanced forms of immunochemo would target a cancer with particular mild drugs and high powered supplements. For Kras mutants, IV vitamin C infusions have been helpful.

We chose #4 for its broad coverage potential, low(est) side effects, easy home use, and low cost. The lung thingies disappeared early on, so we have no experience on higher tumor burden in the lungs.
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 to almost nothing mid 2018, mostly IV C


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