Still at the hospital :(

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jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Still at the hospital :(

Postby jep » Thu Dec 05, 2019 11:10 am

My husband was admitted on Friday with abdominal cramping and vomiting, and he’s still here :(

He hasn’t eaten anything since Thursday morning....they have done so many tests (CT scan, x-rays, MRI, colonoscopy) and they are still not sure if this is from the partial blockage in his colon, side effects from the double immunotherapy trial, or some issue in his small intestines....he has an NG tube, which is helping, but he’s still bloated....also, his blood pressure is up (currently 153/112)...

They originally thought it was colitis from the immunotherapy, but the scope ruled that out, and they stopped giving him the steroids....I’m wondering if they should start them back up again (?)

We are currently waiting for the results of a barium “discovery” test....

So frustrated right now,
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
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 (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 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: Still at the hospital :(

Postby Punky44 » Thu Dec 05, 2019 12:12 pm

Ugh I’m sorry :(

Prayers for your husband they figure out the answer soon and hoping the NG tube won’t be in long!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Still at the hospital :(

Postby jep » Thu Dec 05, 2019 1:00 pm

Thank you!! Still waiting for these damn test results....I will post any updates...
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
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 (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 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Still at the hospital :(

Postby AmyG » Thu Dec 05, 2019 4:11 pm

That sound so very stressful. Hang in there. <3
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Still at the hospital :(

Postby stu » Thu Dec 05, 2019 5:30 pm

Thinking of you both . Hope it resolved soon .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Still at the hospital :(

Postby fumaros » Thu Dec 05, 2019 5:56 pm

Praying for both of you. Hopefully, the congestion will pass.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

Wewillfight
Posts: 26
Joined: Sun Mar 03, 2019 5:27 am

Re: Still at the hospital :(

Postby Wewillfight » Thu Dec 05, 2019 5:58 pm

I hope everything works out positively.

From a first hand perspective the symptoms are similar to a sbo.

Sbos can be managed.

Take care.
Feb 2017 (35yr) stage IIIc, surgery, colostomy, 2 nodes ( crohns colitis since 17yr
6 months FOLFOX
MSS - low mutation burden, TMB=1
NED
Rejoin June 2018
December 2018 symptoms
March 2019: recurrence , surgery , some spread to pertineum
Jan-June 2019 Folfiri+Cetux
No spread.
August 2019: partial blockage symptoms
Nov 2019: Aborted small bowel resection, venting gastronomy fitted , home TPN
Dec 2019- Jan 2020: Keytruda
Feb 2020: reaction
Feb 2020: treatment ceased, TPN withdrawn
March 18 2020: RIP Brother.

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: Still at the hospital :(

Postby Siti » Fri Dec 06, 2019 6:07 am

Sorry to hear this Jep. I hope they figure out the root of the problem soon!
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Still at the hospital :(

Postby jep » Fri Dec 06, 2019 7:55 am

Thank you all....we’re still here a week later....the discovery test showed no SBO, so they’ve ruled out basically everything....his surgeon feels that this tumor/partial blockage in his colon is causing this....they didn’t initially think so because they were able to get a camera through during the scope, but what else could it be???

So, surgeon wants to create a bypass and give my husband a colostomy....my husband would be totally fine with that, but he’s worried about getting kicked out of his clinical trial....he was hoping they could just put a stent in his colon and allow him to get back to treatments....surgeon is saying that the tumor is too low and too close to the rectum for a stent (he’s a colorectal specialist, so I trust that judgement).....any thoughts would be greatly appreciated.....looks like surgery will happen this afternoon :shock:

Thank you to everyone on this board.....I appreciate all of your wisdom and support....it’s nice to be in a space where people understand the pain, the fear, and the frustration....
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
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 (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 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: Still at the hospital :(

Postby Siti » Fri Dec 06, 2019 11:21 am

I don’t really understand, your husband has had so many scans recently, just prior to his initial LN surgery and then prior to immunotherapy. None of the scans detected the large tumour?
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Still at the hospital :(

Postby jep » Fri Dec 06, 2019 11:47 am

We did know about this recurrence in his colon.....he did have radiation on this area, but it obviously didn’t work....also, the initial plan for August’s surgery was to remove the nodes AND that section of his colon/rectum....the surgery was aborted to give him the opportunity to start treatment ASAP....the thinking was that the recovery from that type of surgery could be very long (given his history).....also, the tumor is actually on the outside of the colon and suppressing the colon in that spot....squeezing it.....so, he started the clinical trial hoping that we would see results....and here we are....does that make sense (?)
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
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 (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 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Still at the hospital :(

Postby jep » Fri Dec 06, 2019 11:50 am

Just to clarify, the lymph node resection was way too dangerous (once they got in there and realized that the larger node is wrapping around the vena cava), so they decided not to do the colon surgery either....
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
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 (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 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Still at the hospital :(

Postby jep » Sat Dec 07, 2019 12:19 pm

Well, the surgery did happen yesterday, and my husband is now recovering in the ICU....turns out the partial blockage in his colon was the culprit....he was so bloated because his colon was full....they got everything out and created a bypass and placed a colostomy bag....

We’ve been thinking a lot about this immunotherapy (which is known to swell tumors)....is it possible that the recent growth of his nodes and of this tumor on his colon is really just swelling from the immunotherapy? Could this actually be a sign that the drugs are working?? It just seems like the growth is too fast to be the cancer growing.....is this just wishful thinking??

I’m so relieved that the surgery is over....time to heal and regroup...
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
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 (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 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Still at the hospital :(

Postby AmyG » Sat Dec 07, 2019 2:02 pm

Did they give you any idea about how long he'll be in the hospital? I imagine you're both ready to be home.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Still at the hospital :(

Postby jep » Sat Dec 07, 2019 2:13 pm

Last night his surgeon mentioned 5 days....we’ll see....
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
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 (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 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20


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