What’s up with my hubby?

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jep
Posts: 190
Joined: Sun Jun 11, 2017 7:45 pm

What’s up with my hubby?

Postby jep » Thu Nov 28, 2019 3:40 pm

Hey all....so my husband started have loud rumbling and gurgling in his abdomen earlier this week....this morning he was complaining of constipation and bloating....he hasn’t passed much gas at all today and he also hasn’t had any notable BMs....he has also been experiencing cramping that comes and goes (on his left side).....I’m worried, but he thinks I’m overreacting....could this be a side effect of the immunotherapy? I’m worried about an obstruction....any thoughts??
Thank you, and Happy Thanksgiving....
Jep

Ps....he cooked thanksgiving dinner but didn’t eat a thing...
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)
Phase 1 Trial (October 2019 - ?)

User avatar
ginabeewell
Posts: 368
Joined: Wed Oct 24, 2018 10:30 am

Re: What’s up with my hubby?

Postby ginabeewell » Fri Nov 29, 2019 10:19 am

That sounds a little bit how I felt before I got diagnosed with typhlitis. I thought it was just chemo side effects and probably would not have been diagnosed had I not had a CT scan otherwise scheduled. That’s a pretty rare diagnosis but you could ask about it if it looks like it might correspond with his symptoms.
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: 190
Joined: Sun Jun 11, 2017 7:45 pm

Re: What’s up with my hubby?

Postby jep » Fri Nov 29, 2019 11:38 am

Thank you Ginabeewell....that’s good to know....he called his surgeon’s office this morning and was able to speak with the on call doctor...he said that as long as he’s not running a fever or vomiting, and keeping down liquids, he is ok....if he vomits or runs a fever, then head to the ER....it’s now been more than 24 hours since he has eaten.....
Thank you!
Jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)
Phase 1 Trial (October 2019 - ?)

jep
Posts: 190
Joined: Sun Jun 11, 2017 7:45 pm

Re: What’s up with my hubby?

Postby jep » Sat Nov 30, 2019 6:24 am

We had to cut our Thanksgiving getaway short because my husband was not getting better, and wanted to be close to his doctors . . . so glad about that decision because he vomited on the drive home. I took him to the ER and the did bloodwork and a CT scan. They said that it is most likely colitis (although the scan showed that his appendix is slightly distended) . . . His surgeon admitted him to stay overnight for IV fluids and antibiotics . . . I'm thinking that this may have been caused by the phase 1 trial (?) . . . one of the possible side effects is listed as "immune system related side effects such as inflammation of the lungs, skin, colon, liver . . . "

I know that there are dozens of posts about colitis . . . I was reading through many last night . . . any insight would be greatly appreciated . . . do you think they will have him stop the trial?

Thank you!
jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)
Phase 1 Trial (October 2019 - ?)

DarknessEmbraced
Posts: 3376
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: What’s up with my hubby?

Postby DarknessEmbraced » Sun Dec 01, 2019 9:49 am

I'm sorry your husband is having such a hard time and I hope he feels better soon!*hugs* Did they say what type of colitis? I have dealt with ischemic colitis which occurs due to lack of blood flow to the colon. I hope you get answers soon!*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! :)

jep
Posts: 190
Joined: Sun Jun 11, 2017 7:45 pm

Re: What’s up with my hubby?

Postby jep » Sun Dec 01, 2019 10:17 am

Hello, and thank you! They have not told us exactly what type of colitis, but they believe it's chemo induced and not an infection . . . at least that's what the on call doctor told me last night when I called him in a panic . . . my husband was feeling better this morning (earlier), but now he's super bloated and feeling like he's going to vomit again . . . I know he doesn't want the NG tube, but I think they may bring that up again. . . .
jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)
Phase 1 Trial (October 2019 - ?)

User avatar
ginabeewell
Posts: 368
Joined: Wed Oct 24, 2018 10:30 am

Re: What’s up with my hubby?

Postby ginabeewell » Sun Dec 01, 2019 3:53 pm

Ugh, so sorry. My typhlitis was an infection, but even so they were able to wipe it out with a week’s worth of IV antibiotics and another week or so of oral antibiotics.

The good news is that once I was treated, I felt MUCH better. In fact I never felt as bad with chemo again.

Keep us posted, please!
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: 190
Joined: Sun Jun 11, 2017 7:45 pm

Re: What’s up with my hubby?

Postby jep » Mon Dec 02, 2019 12:34 pm

Ok, we’ll my husband wasn’t improving on the meds for colitis, so they did a colonoscopy....no colitis....but he does have a recurrence in his colon that is narrowing it (which seems to be the cause of the cramping, diarrhea, etc.). BIG decisions to be made in the coming weeks....does he stick with the immunotherapy, or is this partial blockage so dire that he needs to have surgery and stop the clinical trial? Ugghhh....the doctors ordered and MRI to get more info...any thoughts?
thank you,
jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)
Phase 1 Trial (October 2019 - ?)

Siti
Posts: 97
Joined: Thu Aug 01, 2019 10:58 am

Re: What’s up with my hubby?

Postby Siti » Mon Dec 02, 2019 2:45 pm

I’m really sorry that you both are going through this — I wanted to reply sooner but wasn’t sure if I’d give any good advice.

Did he get clear margins previously? How long does it take for the immunotherapy to show good results? What did your doctor say?

Big decisions ahead indeed...
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

jep
Posts: 190
Joined: Sun Jun 11, 2017 7:45 pm

Re: What’s up with my hubby?

Postby jep » Tue Dec 03, 2019 5:50 pm

Hi Siti....his margins were clear (w/in microns) ....his onc says that he hasn’t been on the immunotherapy for long enough to know if it’s working....I guess they can put a stent in his colon to keep the partial obstruction from getting worse....and he can move forward with the trial....right now we’re just trying to get him to the point where he’s not feeling so full and bloated, and to where he is able to eat....
Waiting to speak with his surgeon now....
Thanks!
jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)
Phase 1 Trial (October 2019 - ?)


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