Any success stories?

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worriedson714
Posts: 37
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Any success stories?

Postby worriedson714 » Sat Aug 21, 2021 5:43 pm

Hello.so my dad's nephstomy tube keeps coming out and causing infections . So I looked up info if they improve survival how often they help. The info was all bad so i am wondering any success stories out there with these tubes ?
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
watching and waiting
9/21- Surgery to remove prostate and bladder- Permanent Urostomy still cancer left
Watching and waiting
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg

KimT
Posts: 695
Joined: Sat Feb 20, 2010 8:53 pm

Re: Any success stories?

Postby KimT » Tue Aug 24, 2021 7:51 pm

Nephrostomy tubes are problematic and what your dad is going through is quite common unfortunately. They create a highway directly into the kidneys so infections are hard to prevent and they are easily dislodged. The person can’t see them and it’s hard to prevent dislodging them because they are on the back. They lay on them and lean on them all day long. They are not ideal for long term management of bladder and kidney issues. I’m not clear on your signature on whether or not your father has had a urostomy. Urostomies are much easier to manage.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

worriedson714
Posts: 37
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: Any success stories?

Postby worriedson714 » Thu Aug 26, 2021 12:33 pm

KimT wrote:Nephrostomy tubes are problematic and what your dad is going through is quite common unfortunately. They create a highway directly into the kidneys so infections are hard to prevent and they are easily dislodged. The person can’t see them and it’s hard to prevent dislodging them because they are on the back. They lay on them and lean on them all day long. They are not ideal for long term management of bladder and kidney issues. I’m not clear on your signature on whether or not your father has had a urostomy. Urostomies are much easier to manage.


He has a urostomy also I just read studies on pubmed that said people with nephrostomy tubes usually don't live more then a year so it's been freaking me out . So was hoping there was success stories out there with people saying they have lived long time with them . Or they had there problem fixed got rid of it and continued healed from the issue but maybe this is the wrong website for it idk thanks for the reply though .
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
watching and waiting
9/21- Surgery to remove prostate and bladder- Permanent Urostomy still cancer left
Watching and waiting
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg

catstaff
Posts: 140
Joined: Wed Mar 03, 2021 11:37 am

Re: Any success stories?

Postby catstaff » Thu Aug 26, 2021 1:49 pm

I doubt it's the nephrostomy tube itself that causes much reduction in survival, though it does seem to require considerably more attention than a urostomy. It would be more related to _why_ such a tube is required. People who require them for non-malignant reasons can live with them for years if necessary (it is preferable not to be necessary, but sometimes it is).
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

worriedson714
Posts: 37
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: Any success stories?

Postby worriedson714 » Thu Aug 26, 2021 7:57 pm

catstaff wrote:I doubt it's the nephrostomy tube itself that causes much reduction in survival, though it does seem to require considerably more attention than a urostomy. It would be more related to _why_ such a tube is required. People who require them for non-malignant reasons can live with them for years if necessary (it is preferable not to be necessary, but sometimes it is).


Your right it said people who have them for malignant reasons i didn't think about it that way it's the cancer more then the tube .
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
watching and waiting
9/21- Surgery to remove prostate and bladder- Permanent Urostomy still cancer left
Watching and waiting
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg


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