Husband broke down last night

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Husband broke down last night

Postby susie0915 » Mon Aug 28, 2017 7:37 am

I'm so sorry your husband has to go through this. I had a small bowel obstruction 4 weeks after my resection. All of the sudden one afternoon I felt strange pain and noticed my ileo did not need emptying. I went for walks to no success. I went to the emergency room and a bowel obstruction was confirmed. Mine was caused by scar tissue, which could've been from my past hysterectomy in combo with the resection. It did not resolve itself after about a week of ng tube and walking as well as no solid food. My surgeon decided at that point he would reverse my ileostomy since he had to go in a remove the scar tissue. This complication did push back my adjuvant chemo, but I was happy for the reversal. I hated the bag, because I had nothing but problems with it. I was in the hospital for 3 1/2 weeks. I did get a c diff infection after the surgery so that was fun after just having my reversal and no rectum. lol. I'm glad you took your husband to the hospital, obstructions can be dangerous is not dealt with. Hopefully, his will resolve itself as many do, and his pain will subside. Just know we are all praying for him and you as well.

Susie
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Husband broke down last night

Postby mpbser » Mon Aug 28, 2017 9:25 am

Susie,

We are hoping to god that there aren't adhesions or scarring causing a stricture which is causing the obstruction. Given the dosages and intervals of all these opiates, it seems more likely to just be induced by meds and can be relieved with very careful med monitoring, walking, IV fluids (finally got on a drip at around 2:00 am), and rest/liquid diet. He's going to lose weight and that is great b/c the closer he gets to a normal weight before chemo and liver surgery, the better.

We got to see his cardiologist, surgeon (from the May hemi-colectomy), and primary care doctor this morning. It is such huge relief to be in attentive and responsive care.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Husband broke down last night

Postby susie0915 » Mon Aug 28, 2017 10:16 am

It sounds like blockage is caused by meds. Passing gas is a good sign too. I didn't at all. Yes he will lose weight, I know I did.
Hoping things continue to get better for him, and for you. It's so tough to watch your loved one suffer. You keep fighting for him you have been a great advocate. Hugs.

Susie
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Husband broke down last night

Postby mpbser » Mon Aug 28, 2017 10:51 am

Given the ordeal we experienced at MGH, we are exploring an alternative option for his upcoming liver surgery. We have received a referral to a pancreatic and liver surgeon in Albany who has excellent credentials. Yes, we have great respect and faith in the liver surgeon at MGH but my husband just can't go through the drive and chaos in the after care again. Husband will continue to be under the care of his oncologist at MGH, whom we have an appointment with on September 12.

I am calling the Albany surgeon right now to discuss.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Husband broke down last night

Postby NHMike » Mon Aug 28, 2017 11:04 am

Dartmouth-Hitchcock in Lebanon NH might be an option too. They have a number of surgeons but many of them cover multiple areas.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Husband broke down last night

Postby mpbser » Mon Aug 28, 2017 11:50 am

It's still a haul over the Green Mountain National Forest... but yeah, might be an option
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Husband broke down last night

Postby mpbser » Mon Aug 28, 2017 11:56 am

Fax to Albany doctor, b/c there are issues with the phone line:

I am reaching out to you because my husband needs liver surgery.

To try to make a long story short, he was diagnosed with adenocarcinoma of the colon after being admitted to the hospital (SVMC in Bennington) with congestive heart failure February 27 to March 1. The CHF was due to acute anemia which was being caused by a blood at the left/descending colon where the tumor was located and had invaded through the intestinal lining. CT scan and pathology from April 12th colonoscopy confirmed malignancy. The colonoscopy was incomplete due to the obstruction.

M---- had a nuclear stress test on May 2nd and the above-mentioned heart catheterization around May 10th to clear him for a May 19th hemi-colectomy performed by Dr. John Cope SVMC. His ejection fraction had improved from the February 28th 30% to 40%, so his cardiologist, Dr. Scott Rogge at SVMC, cleared him for the procedure. While performing the LAP resection, Dr. Cope discovered one or two small masses (I can’t recall exactly what he said he saw back at that time) on the liver. He took a wedge biopsy from the left lobe which came back with positive malignancy. Also, 9 out of the 54 removed nodes were positive.

On June 17th, M---- had a PET scan which found masses at the transverse-right colon juncture as well as on the liver. He had an abdominal MRI on June 30th which indicated two masses on the liver: one on the left lobe where the wedge biopsy was taken and one on the right lobe.

In the following month, Dana Farber performed genetic testing and M---- decided to be a patient at Mass General for his primary oncology advisement and treatment guidance. After much delay in scheduling appointments with Mass General’s oncologist Dr. Zhu, colorectal surgeon Dr. James Cusack, and liver surgeon Dr. Motaz Qadan, he finally had a LAP sub-total colectomy at Mass General on August 21th.

The plan was to do the LAP colon resection and LAP “chip” of the right liver lobe and LAP RFA of the small (.5 cm) left lobe mass all at the same time. Unfortunately, when Dr. Qadan ultrasounded the liver and did a visual inspection, he saw that either 1) the left lobe mass had increased in size since the June 30th liver MRI and was too large to remove with the “chip” process as it is located right up against a blood vessel or 2) the MRI imaging imprecisely showed its dimensions. The LAP liver procedure was aborted but the colectomy was performed.

The plan moving forward appears to be that M----will recover from last week’s surgery, then have a couple months of chemotherapy, and then will have open liver surgery. If the chemo has shrunk the tumor, then if it is small enough, the “chip” method could be used for its removal. Although RFA had been originally planned for the right lobe mass last week, because the goal had been just to do a laparoscopic procedure (M----’s preference at the time with the information available at the time), since he would be opened up this time, chip/surgical removal of that spot would now make sense.

Dr. Qadan also suggested another possibility of removing the left lobe in its entirety because he also saw numerous small spots scattered on the left lobe.

The reason we are reaching out to you is that M-----’s post-operative recovery at Mass General was horrific and we are now debating the wisdom of returning there for the liver surgery. In particular, he was discharged 1) before he was able to be sufficiently monitored for pain and nausea control once out of the hospital and 2) with an excruciatingly painful 5 hour car ride back to Bennington to one of our residences. Although I had inquired about the travel issue, it was woefully addressed and a cascade of events subsequent to that painful car ride on Thursday has led to him having small bowl obstruction consequent to the need for opiates to control the pain. He is currently inpatient at SVMC under Dr. Cope’s care.

We have an appointment to see Dr. Zhu at Mass General on September 12th. We hope to also see Dr. Qadan at that time as well. If we decide against Mass General, and would like you to perform his surgery, we would appreciate an appointment perhaps September 14th or 15th for a consultation. I would also want all the records from Mass General and SVMC to be sent to you beforehand.

I look forward to hearing from you or your office.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Husband broke down last night

Postby NHMike » Mon Aug 28, 2017 12:06 pm

That sounds like a good letter.

I didn't realize that you were in SW Vermont. I usually assume Montpelier or Burlington. Albany would be a lot easier than Lebanon.

Partners (MGH) is on EPIC (electronic medical records). I think that other hospitals on EPIC can grab EMR data. I got DVDs from the two local hospitals that I used for scans and brought them down to Dana Farber. I believe that my current local hospital requested the MRI scan from Brigham and Womens and they mailed it back here which probably took a few days. The imaging data is pretty big so sometimes there's an advantage to getting it on a DVD or the hospitals mailing it from one to the other.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Husband broke down last night

Postby mpbser » Mon Aug 28, 2017 6:23 pm

I spoke with his surgeon today and it appears that the problem is paralytic (or "stuttering") ileus. It is good that we caught it in time because it can be just as dangerous as a bowel obstruction.

I remembered someone on this forum mentioned that chewing gum was a good way to stimulate the digestive system so I picked my husband up a pack on my way to the hospital this afternoon. There was only one brand, Wrigleys (had to go to two stores before finding it), that didn't list "sugar alcohols" in the nutritional values list. My husband reacts badly to them. I checked with the surgeon and he said that ironically he was reading about that very subject -- gum and stimulation -- this weekend and he encouraged it. After he started chewing a piece, my husband needed to have a bowel movement literally 30-45 seconds later. The same thing happened when he had his second piece this evening.

He poo-pooed the idea that the two were connected, but then again he tends not to like to listen to me when he is cranky.
Last edited by mpbser on Mon Aug 28, 2017 6:50 pm, edited 1 time in total.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Husband broke down last night

Postby susie0915 » Mon Aug 28, 2017 6:40 pm

Glad to hear the gum worked.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Husband broke down last night

Postby LPL » Tue Aug 29, 2017 2:32 am

mpbser,
It sounds as things are improving - so good to hear :)
My husband's surgeon 'prescribed' chewing gum already when hubby was in hospital recovering from surgery. I wonder if many others get that advice? Sounds as it worked great for your hubby.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

User avatar
LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Husband broke down last night

Postby LeonW » Tue Aug 29, 2017 4:49 am

LPL wrote:. . . surgeon 'prescribed' chewing gum already when hubby was in hospital recovering from surgery. I wonder if many others get that advice? . . .

During recovery from the colon job, hospital staff (nurses) suggested and provided chewing gum to get colon going. It did ultimately, but took 12 days. Unsure if it was the gum . . . .
L
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Husband broke down last night

Postby mpbser » Tue Aug 29, 2017 8:50 am

We went from one extreme to another because now he has mega diarrhea. We saw his primary care doctor and local surgeon again first thing this morning. We absolutely LOVE his local care. He will be on oral fluids today and eat soft solids by this afternoon. He is off opiates and on tylenol and tramadol again. Looks like he will be discharged sometime tomorrow if all goes well between now and tomorrow morning.

He will have spent more time at SVMC with this recovery than he did after the colectomy. /SMH
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Husband broke down last night

Postby NHMike » Tue Aug 29, 2017 9:07 am

Glad that things have rapidly improved.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Husband broke down last night

Postby susie0915 » Tue Aug 29, 2017 11:17 am

So glad he got things moving. There was a time for me I went to emergency thinking I had another bowel blockage. Nope, just constipated, but was painful. I caused it by taking too much immodium and lomotil. It's hard to find the right level of meds to take when you have frequency. I think I've figured it out. Now you know but meds can wreak havoc on our digestive system. And being constipated can be quite painful. So glad he's feeling better.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5


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