PET scan after CEA rise...

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Monimom
Posts: 20
Joined: Wed Jan 08, 2020 6:15 pm

PET scan after CEA rise...

Postby Monimom » Mon Jun 29, 2020 2:59 pm

Hi , so todays appt wasnt bad... meaning no bad news ... but I always leave feeling less informed ...even though I ask questions... perhaps you can help..
his Dr. reviewed the PET scan with radiography, and they see no progression... so she is stumped as to why the rising CEA... she said sometimes it happens prior to progression, but added we will wait until Aug for another CT scan.. and no CEA tests until then.. she feels its creating unnecessary worry. She wants to start DH back on OXali but wont right now because of his neuropathy... I asked if the CEA can elevate because of the dying tumors she said ..no

So she showed us his PET scan.. she said theres a lot of calcification in the center of the liver mets (dark areas) but no change whatsoever in the sigmoid colon .. I am confused as to how they "shrink" if they are dying in the center ?

am I misunderstanding this?? also she mentioned the next line of treatment when she switches will be Panitumumab any experience with that drug??


thank you in advance
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged

jep
Posts: 250
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: PET scan after CEA rise...

Postby jep » Mon Jun 29, 2020 3:31 pm

My husband has been on panitumumab (or vectibix) twice and he’s had good responses, but the skin rash is really harsh...ask his oncologist to front load the meds that help with the skin....I can’t remember the name of the meds, but it’s good to start them before first treatment....
Best of luck with the chemo...
jep
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

User avatar
ginabeewell
Posts: 420
Joined: Wed Oct 24, 2018 10:30 am

Re: PET scan after CEA rise...

Postby ginabeewell » Mon Jun 29, 2020 11:23 pm

I too did Vectibix - once with FOLFOX and about to restart with FOLFIRI. The rash is no joke. My onc referred to it as “treatable” but a very Christian fellow patient told me that being on it was as close as she ever came to losing faith in God. She had a very extreme reaction, but even so, it pays to be proactive here.

Ask for a prophylactic RX for doxycycline and a topical steroid to begin 2 weeks prior to treatment if you can.

If you can make a derm appt for a few weeks after starting, I would do that too. And invest in some high quality moisturizers / serums and good sunscreen and a hat.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

jep
Posts: 250
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: PET scan after CEA rise...

Postby jep » Tue Jun 30, 2020 8:41 am

Yes Ginabeewell!! Great advice!
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

rachelfromnyc
Posts: 41
Joined: Fri Oct 04, 2019 11:32 am

Re: PET scan after CEA rise...

Postby rachelfromnyc » Tue Jun 30, 2020 3:30 pm

Hi Monimom- I don't have experience with Panitumumab but know that it's somewhere down the line for me. My oncologist explained that side effects are worse, as others have described, and therefore she's holding onto it until needed. Regarding your husband's liver tumors, is he on avastin currently like me? I have some lung nodules where something similar is happening. It was explained as: since avastin is a VEGF inhibitor, the blood vessels on the inside have been cut off and therefore have less access to nurtients in the bloodstream compared to the outside of the tumor. In my case, it looks like little holes in the middle of the nodules.

No progression is always good. I am also trying to figure out this CEA business. When mine started increasing, I would ask to take it every time I was there which was stressful. I asked two oncologists what the appropriate frequency is to look at it. One answer was once per month and the other was evertyime time you have a scan since that number alone won't be used to make a decision. It has to be looked at with the scan.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
TMB - 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin


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