When it rains...

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DarknessEmbraced
Posts: 3743
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: When it rains...

Postby DarknessEmbraced » Sat Dec 03, 2022 10:00 am

I hope his radiation goes well. *hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Claudine
Posts: 757
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: When it rains...

Postby Claudine » Wed Jan 11, 2023 3:45 pm

Here we are in 2023, nearing on 5 years since diagnosis. 2022 was rough for DH, with LAR surgery, ileostomy reversal, then recurrence in DH's L3/L4 vertebrae. But there were also great moments, including several fun trips.

Two months after SBRT, he just had an MRI for his back and PET scan for upper body. Results are mixed. There's still uptake at L3/L4, although less than before radiation. More concerning is new grossly focal uptake at the rectal anastomosis site:
"Bowel: Postoperative changes of low rectal anastomosis with focal FDG avidity of the rostral sigmoid colon (SUV max 8.1). Unchanged surrounding presacral scarring/thickening [...] Superior to the anastomosis, there is relatively focal FDG avidity, which could be physiologic in nature or represent recurrent disease. As clinically indicated, consider direct visualization."

How I wish this to be "physiologic in nature"! But wishes have nothing to do with the reality of the disease, so I suppose another MRI (of the LAR anastomosis) will be scheduled soon. Ugh.

But, I learned this morning of the passing of a friend's brother, from aggressive leukemia; he was only 41. So, I'm still grateful that DH's cancer, although relentless, just creeps up slowly, and I hope that if it is a rectal recurrence, it can be resected (again). Meanwhile his onc is looking into clinical trials; DH's genetic testing came back with low tumor burden (4), confirmed KRAS G12A and added TP53 mutation, for which there are trials out there.

Keep fighting, always keep fighting!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22;
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20;
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: When it rains...

Postby nmorgen » Thu Jan 12, 2023 1:39 am

Hi Claudine,

I’m sorry to hear that you had such a rough year. I hope they are able to find a clinical trial for your husband. Good luck!
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

aquarian_asian
Posts: 35
Joined: Wed Jul 07, 2021 7:07 am

Re: When it rains...

Postby aquarian_asian » Thu Jan 12, 2023 6:33 am

Hi Claudine
You are one of the strong women I have seen in this forum. So stay strong as always and fight it back with & for your DH.
Take care dear, cheers

thanks
Feb 2021 - Dx Stage3B - rectal cancer (Age is 48, Male)
April 2021 - Radiation - for a week (5 mins x 5 days)
May 2021 - LAR surgery
Pathology: G2, LN+ PVI+, Lymph Nodes 5 out of 22
Temporary Ileostomy
Jun-Aug 2021 - Chemo 4 cycles 3 months (CAPOX)
Feb 2022 - Ileostomy reversal

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: When it rains...

Postby utahgal7 » Thu Jan 12, 2023 10:55 am

Claudine,

I am hoping that 2023 is a better year for your husband. It's wonderful that you have many positive moments with him. You stated in a previous post that your husband is KRAS mutant G12A. Cardiff Oncology has a medication in their pipeline called Onvansertib. According to the drug company website, this medication can target ALL mutant KRAS types. Right now, there is a phase 2 clinical trial called ONSEMBLE which is a second line treatment for mCRC that includes FOLFIRI and Bevacizumab along with Onvansertib. Based on your signature about your husband, he has tried FOLFIRI. Maybe your husband could apply for compassionate use of Onvansertib only. This is just a suggestion. Only your husband's oncologist would know if he would be a candidate for Onvansertib.

Keep fighting Claudine! I so admire your strength and resilience in the fight against this horrible disease.

Best wishes,
Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

Claudine
Posts: 757
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: When it rains...

Postby Claudine » Thu Jan 12, 2023 12:24 pm

Thanks guys! Utahgal7, I have been looking closely at Onvansertib for a while and indeed, it looks like my husband could be a candidate. Plus, Folfiri worked well for him and he hasn't developed a resistance to it yet. We're meeting with his onc on the 26, I will definitely bring it up!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22;
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20;
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22

DarknessEmbraced
Posts: 3743
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: When it rains...

Postby DarknessEmbraced » Sat Jan 28, 2023 11:54 am

I'm sorry he's had such a hard year. *hugs* I hope 2023 goes better for him.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Claudine
Posts: 757
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: When it rains...

Postby Claudine » Mon Jan 30, 2023 1:37 pm

Thank you! I wasn’t able to go to the onc meeting last week but from what DH said, he’s back on the routine 3-months check, except this time it’ll be a lumbar MRI instead of the usual CT scan; and a new PET in 6 months. We’ll see what 2023 brings, but we’re making lots of plans, you can’t let this disease beat you down!
Ha, I forgot - CEA is the lowest it’s been in a while, down to 29 - I know it’s still very high but you take every little positive thing you can find. It was 44 in December, 80+ last spring.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22;
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20;
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22


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