Chemo fail?

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Monimom
Posts: 46
Joined: Wed Jan 08, 2020 6:15 pm

Chemo fail?

Postby Monimom » Mon Oct 05, 2020 8:45 am

Good morning to all, I have a question regarding chemo and treatment, my DH had a CEA level increase back in June, his Dr ordered a PET scan but the scan didn't reveal anything suspect, she then decided to hold off on doing CEA tests for a bit as they can cause unnecessary anxiety, at his last treatment at the end of sept. she wanted to schedule a CT scan, he requested to wait until Oct. as he just began a new job and is trying to keep his time off low. she replied to his request with, "it's your life'
She apparently decided to do a CEA at that appt. (Sept 25), Today his level was uploaded in his chart online, it went from 582 (June 15) to 1474 (Sept 25 ), I am shaking as I type this, he doesn't know he's at work, his Dr. hasn't called, but I see she notated this in his chart :

He does not want to get a repeat CAT scan until end of October at least then later in the chart she has THIS !!!!

Patient has been refusing a restaging CAT scan does not want to do it even for the next cycle wants to wait 26 weeks more. (this is UNTRUE)

I am currently at complete odds with all of this, I know what we need to do, I am just freaking out, this is all too much to bear right now, we havn't sought out any other Dr at this point as we're trying to keep insurance, we had to strat paying COBRA, until his insurance kicks in, I feel like im drowning, if anyone feels they can spare a ray of sunshine I am more than happy to receive.
Thank you
Moni : |
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

Claudine
Posts: 438
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Chemo fail?

Postby Claudine » Mon Oct 05, 2020 9:38 am

Also dealing with "I know something he doesn't know" regarding my husband's CEA levels, I totally empathize with you! And I'm so sorry about the mix up, obviously there's a misunderstanding between what your husband asked (postponing scan by a month) and what his onc thinks (26 weeks!). I wouldn't hesitate and call her to discuss this with her directly. Explain that your husband doesn't want such a long delay, just a few weeks, and have her schedule the scan.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

boxhill
Posts: 609
Joined: Fri Apr 06, 2018 11:40 am

Re: Chemo fail?

Postby boxhill » Mon Oct 05, 2020 1:12 pm

I just want to point out that unless you were actually at the appointments, you can't be sure what he actually said--or what she actually asked. It does sound like she was frustrated by his desire to postpone a scan.

In any case, I understand your anxiety and agree that waiting too long for a CT scan seems unwise given his CEA trend and his original staging. My H and I have both had cancer, and neither one of us would call the other's doctor. I'd discuss it with him first, personally
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

Monimom
Posts: 46
Joined: Wed Jan 08, 2020 6:15 pm

Re: Chemo fail?

Postby Monimom » Tue Oct 06, 2020 6:04 am

Boxhill,
I agree totally, I did discuss this with my DH, he said he told her he'd like to wait until Oct , but this was before we knew about his CEA rising, she has not contacted him regarding it,because as you said she is likely put off by his request to wait, we received the notification of his test result via mychart online,she never mentioned to him at his appt. that she was doing the test, and obviously this rise changes his feelings about waiting, so we will be trying to get an appt this week. I have in the past called his Dr. on his behalf when needed either because he's not been able to to call or because he's requested me to. I would never do it without his knowledge.

Thank you for your replies
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

Claudine
Posts: 438
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Chemo fail?

Postby Claudine » Tue Oct 06, 2020 10:56 am

Glad to hear that the confusion over the appointment is getting resolved. When we first learned about DH's diagnosis, a friend told us: with cancer, you'll need two things: a good oncologist; and, an advocate. We decided early on that I'd be that person - the one who reads reports, does the research, etc. DH goes by what the onc says, and that's it; and even though I do trust his onc, I'm the one pushing (for more tests, etc) , if needs be...
I hope the scan brings answers to the rising CEA levels, and a good plan to tackle whatever is going on XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

Monimom
Posts: 46
Joined: Wed Jan 08, 2020 6:15 pm

Re: Chemo fail?

Postby Monimom » Tue Oct 06, 2020 12:50 pm

Claudine,
Thank you so much for your reply, you have described our relationship, I have always been the "go to" for this, I have been with my husband since I was 17, we've raised our family and this was going to be "our " turn to be a "couple" again.. then this dx happened... :(

I did get a scan scheduled for him this coming Monday, and have been praying about this alot. My husband said if he finds out the cancer has spread after all this chemo, he's done. He is suffering from painful feet from neuropathy from 10 cycles of Oxaliplatin, and lately hes become increasingly tired, we've been truly blessed how well he has handled everything thus far, so i'm not complaining.

I am hoping that God provides us with a clear path with little confusion.

Thank you so much again
Moni : )
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

Claudine
Posts: 438
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Chemo fail?

Postby Claudine » Tue Oct 06, 2020 4:15 pm

Ha, in the same boat regarding grown children, we were looking forward to a lot of traveling, but life decided otherwise... And my husband also suffers from permanent neuropathy in his feet, small gift from Oxaliplatin (which also did not work for him).

While I was waiting in the car and he was meeting with his onc about his latest scan, I would visualize the onc giving him good news... That's my way of praying, I guess. It worked this time (not always the case!).

Wishing you both much strength for the days ahead, keep us posted on the results of the scan XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

Witherap
Posts: 4
Joined: Fri Jul 05, 2019 10:08 am

Re: Chemo fail?

Postby Witherap » Wed Oct 07, 2020 10:12 am

Looks like your husband is mss but do you know if he is high/moderate Vs low from tumor mutational load perspective?

Monimom
Posts: 46
Joined: Wed Jan 08, 2020 6:15 pm

Re: Chemo fail?

Postby Monimom » Wed Oct 07, 2020 12:52 pm

Witherap ,

I apologize, but I dont know what that means , would that info be found in his biopsy report??
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

Claudine
Posts: 438
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Chemo fail?

Postby Claudine » Wed Oct 07, 2020 1:03 pm

No, unless it was tested specifically (requested); MSS folks (like both our husbands) typically do not respond to immunotherapy, but if they have high mutation burden, it sometimes works, giving another treatment option. Foundation One typically does this type of testing; we haven't had it done yet, but it's on my list of things to ask the onc if the next scan doesn't look good!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

Claudine
Posts: 438
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Chemo fail?

Postby Claudine » Wed Oct 07, 2020 2:01 pm

Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report


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