Anyone pass out after abdominal cramping??? ER time

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mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Sun May 26, 2019 3:58 pm

Thanks for chiming in and asking how things are. I'm okay. Still pretty exhausted. On Friday morning, I finally got a copy of the CT "with contrast" that was done at Albany Medical Center when he was there at its ER. It was actually a CT angiogram and I am very impressed with its quality. It ruled out all extra-hepatic mets. Thank god!

The only issue of concern is its findings for the liver. It notes three measurable lesions plus the caudate (known benign) spot, plus "few other smaller poorly defined lesions scattered throughout the liver." I compared it to the March 7th pathology report and surgical diagram Dr. D'Angelica drew for me as well as to the April 1st MRI he had the morning before starting chemo. It was impossible to tell what "lesion" was what. Essentially, the April 1st MRI showed five lesions: 1) segment 6 met wedge; 2) seg 5 biopsied spot of benign hemangioma/hamartoma; 3) seg 3/4B wedge benign hemangioma/hamartoma; 4) seg 4a Jan 2018 resected spot/scar; and 5) "ablation zone" of unknown type; plus the benign caudate biopsy. I am hoping that everything will be properly accounted for when he has his next MRI.

Last week, my husband and I made multiple requests through the portal for that to get scheduled, but it hasn't been put on the calendar yet. I hope it can get scheduled for June 3rd after our appointment with Dr. D'Angelica.

I'm not really going to relax until those results.
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

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby Stewsbetty » Tue May 28, 2019 1:46 am

[quote="mpbser"]My husband and I are not comfortable with him restarting chemo until we get a clear picture of what is going on inside him

My husband has set a threshold of at least 14 for what he wants to see his hemoglobin to be before moving forward: [quote=“mpbser”]

I am sorry that you and your husband have been going through so many setbacks and unfortunate reactions to treatments.

I am wondering how your husband arrived at that number? I think that is in the normal range for hemoglobin. I don’t know if that is realistic for someone in active treatment. No studies or anything but in my experience I haven’t been in the normal range of hemoglobin since before being dx’d in June 2016. Ours is measured a bit differently here (Canada) but mine was 82 (maybe 8.2?) at dx and I don’t think it ever got above 115 during chemo. I haven’t been on chemo for almost 2 years now and though I don’t have my most recent bloodwork printed I am fairly certain that the last results I saw I was still in the low camp.

I can understand after a number of pretty terrible experiences that he is very wary of continuing treatment at this time. I just wonder if if might take some time before he finds his hemoglobin in the “normal” range.

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability to present
November 2018 CT shows only 1 small tumour left

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Tue May 28, 2019 3:37 am

He arrived at 14 based on the tally that shows his pre-surgery and post-surgery values. His hemoglobin was 14.8 before surgery. The normal range, as provided by the MSK lab, is 12.5 - 16.2 g/dL. My husband is a very large man. Medical providers have informed him for someone his size, it should be at least 13.5.

His face has color again. I suspect he is back in the normal range by now. I don't think that 14 is out of reach in the next couple weeks. We would not be opposed to starting chemo back up right away, but we also want a plan for pump, or at least catheter, removal.
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: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Tue May 28, 2019 12:15 pm

Spent a little time today looking more closely at the data.

I found this to be interesting:

In the below linked study of 17 Codman pumps with the Codman catheter, the most frequent complication was catheter failures. There were three catheter fractures and one catheter kink, all of which required replacement. One catheter appeared to have migrated. Another catheter was replaced after the tip migrated caudally and in two subjects, the catheters became disconnected at a connector site and required surgical reconnection.

https://www.nature.com/articles/3101684
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: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Tue May 28, 2019 12:31 pm

This is an interesting report. Sounds identical to the other patient's situation with the duodenal bleed:

https://www.accessdata.fda.gov/scripts/ ... 566&pc=LKK
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

rp1954
Posts: 1523
Joined: Mon Jun 13, 2011 1:13 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby rp1954 » Tue May 28, 2019 3:50 pm

My wife got good Hgb mileage out of liverwurst, pate', and occasionally, real livers, from one TSB, up to several tablespoons per day on immunochemo, which is not as drastic as HAI-FUDR, or regular chemo. Sometimes a half or a whole can of Underwoods Liverwurst spread, or equal pate' amounts. 1-2 TSB a day could usually meet her Hgb requirements. I deleted all retinols (fully pre-formed vitamin A) from her supplements to avoid excess or unbalanced vitamin A questions. Also bone marrow (+ onion) soups help, maybe PSK too.

She was always anemic before cancer. She did better on Hgb with liver + immunochemo than before CRC, even 40+ years ago. To me, quality liver products as replacement therapy for hammered livers, makes as much sense in 2019 as it did 90 years ago.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby Stewsbetty » Wed May 29, 2019 5:30 am

mpbser wrote:He arrived at 14 based on the tally that shows his pre-surgery and post-surgery values. His hemoglobin was 14.8 before surgery. The normal range, as provided by the MSK lab, is 12.5 - 16.2 g/dL. My husband is a very large man. Medical providers have informed him for someone his size, it should be at least 13.5.

His face has color again. I suspect he is back in the normal range by now. I don't think that 14 is out of reach in the next couple weeks. We would not be opposed to starting chemo back up right away, but we also want a plan for pump, or at least catheter, removal.


That is great if his hemoglobin is able to come back so well! I know nothing about HAI stuff but I can see why you would want a plan for dealing with a failed pump.
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability to present
November 2018 CT shows only 1 small tumour left

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Thu May 30, 2019 7:27 am

Thank goodness we convinced his PCP to order bloodwork. He had labs done this morning.

hemoglobin up to 12.2
hematocrit 38%

Still waiting for CMP results
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: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Thu May 30, 2019 10:03 am

CMP shows much better values than before....he's definitely far healthier than he was when labs were last draw, 10 days ago

yay!
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

AmyG
Posts: 276
Joined: Tue Dec 25, 2018 8:08 pm

Re: Anyone pass out after abdominal cramping??? ER time

Postby AmyG » Thu May 30, 2019 10:12 am

That's progress!!
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

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Thu May 30, 2019 10:19 am

Yes! I'm very happy with the progress he is making. At this rate, with Hg up 2 points in 10 days he will be up to 14 in 10 more days, which is when he is scheduled to restart chemo.
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

AmyG
Posts: 276
Joined: Tue Dec 25, 2018 8:08 pm

Re: Anyone pass out after abdominal cramping??? ER time

Postby AmyG » Thu May 30, 2019 2:48 pm

Well how's that for timing!

How has his attitude been during this whole ordeal? Am I wrong in remembering he wasn't overly excited about getting the pump in the first place?
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

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Thu May 30, 2019 3:59 pm

Well, we had numerous questions and concerns. We still do.
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

AmyG
Posts: 276
Joined: Tue Dec 25, 2018 8:08 pm

Re: Anyone pass out after abdominal cramping??? ER time

Postby AmyG » Thu May 30, 2019 6:54 pm

I couldn't remember! I knew there was much discussion if that was the course of action he wanted to take.

Idk how I'd feel if I was in that position. On the one hand, I'd want to exhaust every option out there to make sure I had the best chance at survival. On the other hand, I'd probably be pissed with everything that happened and thought wtf, why did I bother!!!

Really hope everything works out for you guys!
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

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone pass out after abdominal cramping??? ER time

Postby mpbser » Fri May 31, 2019 4:44 am

That's exactly how we feel.
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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