Peri mets, Stage IV --- Need advice

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orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Peri mets, Stage IV --- Need advice

Postby orlar » Tue Nov 21, 2017 6:04 pm

Let the healing be quick and uneventful. Glad to hear you're doing well!
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

AJQ
Posts: 25
Joined: Sun Jul 16, 2017 9:29 am
Location: CA

Re: Peri mets, Stage IV --- Need advice

Postby AJQ » Sat Nov 25, 2017 7:43 pm

bitchslapped wrote:Was wondering how your consult went, AJ :) That was quick. They appear to be quick & organized there @ UCSD from initial contact to consult to scheduling surgery. BFF is scheduled there, also w/Dr. Lowy, next wk for HIPEC (also appendix cancer).
Glad you were a candidate & doing fine! Curious as to how long your surgery was. Estimate for my friend, 5 hrs.
I hope you come back & share some of your experience for our members here when you feel up to it. I plan to share as much as I can 2nd hand (easier for me as I'm not the patient).
Kudos to you for taking the bull by the horns in self advocacy.

Best Wishes in healing,
BS


Thank you. Surgery went well and Dr. Lowy is really awesome. I had many nodules in pelvis and omentum but they were localized and small. Dr. Lowy took all of them out and HIPEC went well too. My surgery was 5 hrs with NO organ removal. Stayed 9 days in the hospital and that was due to my bowels being slow to work so they put me on TPN for couple of days.
for anyone with Peri mets from Colorectal / Appendix Cancer this surgery gives a great hope. I am glad I was able get in when I did.

AJ
53 yr, stage III adenocarcinoma of appendix(PD) and Cecum
5/16/17: LAP Appendix Removal
5/22/17: Diagnosed. T4 poorly differentiated with LVI
6/21/17: LAP RHC: 1/21 positive Lymph. T4N1M0
CEA 6/17: 1.0, 7/17: 1.0, 8/17: 1.0, 9/17: 2.0, 9/28: 2.0, 10/12: 1
7/27/17: started Xelox (Capox) cycles
10/17: CT scan. Multiple Peri and Pelvis mets
11/17: CRS/HIPEC. All nodules removed- low PCI
1/18: CT. 2 lung nodules. next CT on 4/24

AJQ
Posts: 25
Joined: Sun Jul 16, 2017 9:29 am
Location: CA

Re: Peri mets, Stage IV --- Need advice

Postby AJQ » Sat Nov 25, 2017 7:47 pm

fumaros wrote:Glad the surgery went well. Hope the recovery is quick, and you stay free and healthy.


Thank you! So far recovering well at home

AJ
53 yr, stage III adenocarcinoma of appendix(PD) and Cecum
5/16/17: LAP Appendix Removal
5/22/17: Diagnosed. T4 poorly differentiated with LVI
6/21/17: LAP RHC: 1/21 positive Lymph. T4N1M0
CEA 6/17: 1.0, 7/17: 1.0, 8/17: 1.0, 9/17: 2.0, 9/28: 2.0, 10/12: 1
7/27/17: started Xelox (Capox) cycles
10/17: CT scan. Multiple Peri and Pelvis mets
11/17: CRS/HIPEC. All nodules removed- low PCI
1/18: CT. 2 lung nodules. next CT on 4/24

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Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: Peri mets, Stage IV --- Need advice

Postby Atoq » Sat Nov 25, 2017 10:07 pm

Have a nice recovery! Glad to hear the surgery went well.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

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bitchslapped
Posts: 1502
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Peri mets, Stage IV --- Need advice

Postby bitchslapped » Sat Nov 25, 2017 11:12 pm

Glad you didn't have complications as the complication rate can be high from HIPEC. Any problems w/reintroducing foods to your diet? Any recommendations? Getting in & out of bed ok? Since BFF not local, they have requested she stay in the area an extra week after release from the hospital just in case. I think flying home (takeoff & landing) w/b challenging w/such a large incision, but ya gotta do what ya gotta do. Imagine she'll need a pillow as a buffer.
I'm thinking those shorter HIPEC surgeries make a huge difference from some of what I have read on here from several years ago.

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

AJQ
Posts: 25
Joined: Sun Jul 16, 2017 9:29 am
Location: CA

Re: Peri mets, Stage IV --- Need advice

Postby AJQ » Sun Nov 26, 2017 9:54 pm

bitchslapped wrote:Glad you didn't have complications as the complication rate can be high from HIPEC. Any problems w/reintroducing foods to your diet? Any recommendations? Getting in & out of bed ok? Since BFF not local, they have requested she stay in the area an extra week after release from the hospital just in case. I think flying home (takeoff & landing) w/b challenging w/such a large incision, but ya gotta do what ya gotta do. Imagine she'll need a pillow as a buffer.
I'm thinking those shorter HIPEC surgeries make a huge difference from some of what I have read on here from several years ago.

Best Wishes
BS


Thanks. The doctors and hospital staff is wonderful at UCSD. Shorter surgery does help speed up recovery especially if no organs are resected or taken out.
Incision is VERY large so takes time healing. Make sure your friend opt for Epidural- it helps!

Diet is tough. Have to eat small/tiny meals 5-7 times per day. Make sure they start with soft diet. Soups, mashed potatoes , juices, eggs. Drink lot of water. I was on ice cubes and juices in hospital.

Getting in and out of bed gets hard after Epidural is removed but must do it without support as it helps. Walk walk walk walk... as much as possible - the body allows.
They use surgical glue which is better than staples IMO.

I stayed in the area for 5 days after discharge and then flew home. Bought a soft neck pillow, Flight home was 1:30mins so was ok for me.

Will be more than happy to talk to you or your friend and help out. Let me know

I am thinking of going back to work this week...

AJ
53 yr, stage III adenocarcinoma of appendix(PD) and Cecum
5/16/17: LAP Appendix Removal
5/22/17: Diagnosed. T4 poorly differentiated with LVI
6/21/17: LAP RHC: 1/21 positive Lymph. T4N1M0
CEA 6/17: 1.0, 7/17: 1.0, 8/17: 1.0, 9/17: 2.0, 9/28: 2.0, 10/12: 1
7/27/17: started Xelox (Capox) cycles
10/17: CT scan. Multiple Peri and Pelvis mets
11/17: CRS/HIPEC. All nodules removed- low PCI
1/18: CT. 2 lung nodules. next CT on 4/24

AussieAssCancer
Posts: 248
Joined: Sat May 21, 2016 10:16 am

Re: Peri mets, Stage IV --- Need advice

Postby AussieAssCancer » Mon Nov 27, 2017 3:50 am

Great to hear! Definitely keep moving, it already sounds like you’re well and truly on the right track. Good work!!
Dx Oct '15 w/ Stage 3c RC
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
April '16: Clear CT (NED)
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Dec '16: Clear CT (NED)
Feb '17: Ileostomy reversed
Aug '17: Clear CT (NED)
Feb ‘18: Clear CT (NED)

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

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bitchslapped
Posts: 1502
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Peri mets, Stage IV --- Need advice

Postby bitchslapped » Mon Nov 27, 2017 1:11 pm

AJQ wrote:Will be more than happy to talk to you or your friend and help out. Let me know

I am thinking of going back to work this week...


Seriously AJ, now that w/b amazing! Here is our response: :shock: You must be very fit. We've got about 12 years on you, but is encouraging she might be able to accompany her DH to his dr. appt end of Dec for 2nd opinion on prostate cancer tx. A lot going on w/those 2 right now.

She wanted to make sure I thank you for your response, kindness in offer of help...which I do for both of us. She found your response very helpful & feels prepared to leave Wed. I told her that's what we do here on CT...people helping people. Someone recently gave her the neck pillows so most likely will pack one for the trip based on your response. Flight w/b about 2 1/4 hrs. for her. She is getting the epidural + walking/exercising in anticipation of surgery. What will be difficult is giving up her grains & veggies for bland diet. I've suggested she get those protein shakes as protein supposedly to aid in healing, so she did pick up a few.

You've come a long way Baby in such a short time, from your first post on this thread. Bully for you. Exactly what we like to hear on CT. From what I've read, hernia not uncommon w/these types of major surgeries (yes, HIPEC too), so use caution in doing too much too soon (as in going back to work).

Let us know how you are coming along post HIPEC.

Best Wishes,
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

AJQ
Posts: 25
Joined: Sun Jul 16, 2017 9:29 am
Location: CA

Re: Peri mets, Stage IV --- Need advice

Postby AJQ » Mon Nov 27, 2017 7:51 pm

bitchslapped wrote:

Seriously AJ, now that w/b amazing! Here is our response: :shock: You must be very fit. We've got about 12 years on you, but is encouraging she might be able to accompany her DH to his dr. appt end of Dec for 2nd opinion on prostate cancer tx. A lot going on w/those 2 right now.

She wanted to make sure I thank you for your response, kindness in offer of help...which I do for both of us. She found your response very helpful & feels prepared to leave Wed. I told her that's what we do here on CT...people helping people. Someone recently gave her the neck pillows so most likely will pack one for the trip based on your response. Flight w/b about 2 1/4 hrs. for her. She is getting the epidural + walking/exercising in anticipation of surgery. What will be difficult is giving up her grains & veggies for bland diet. I've suggested she get those protein shakes as protein supposedly to aid in healing, so she did pick up a few.

You've come a long way Baby in such a short time, from your first post on this thread. Bully for you. Exactly what we like to hear on CT. From what I've read, hernia not uncommon w/these types of major surgeries (yes, HIPEC too), so use caution in doing too much too soon (as in going back to work).

Let us know how you are coming along post HIPEC.

Best Wishes,
BS
[/quote]

Thanks BS. its been tough in the last few months but I am glad I was able to go and see a specialist - this is really critical.
Drinking protein shakes really helps. I had Impact 3 times a day for few days before Surgery and also drank it once a day after discharge - it really helps

Will keep you posted on my progress. Wish you friend all the best, once again UCSD is an awesome facility- hospital built last year and every room is private and spacious.

keep us updated on progress.

AJ
53 yr, stage III adenocarcinoma of appendix(PD) and Cecum
5/16/17: LAP Appendix Removal
5/22/17: Diagnosed. T4 poorly differentiated with LVI
6/21/17: LAP RHC: 1/21 positive Lymph. T4N1M0
CEA 6/17: 1.0, 7/17: 1.0, 8/17: 1.0, 9/17: 2.0, 9/28: 2.0, 10/12: 1
7/27/17: started Xelox (Capox) cycles
10/17: CT scan. Multiple Peri and Pelvis mets
11/17: CRS/HIPEC. All nodules removed- low PCI
1/18: CT. 2 lung nodules. next CT on 4/24

hawkowl
Posts: 116
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Peri mets, Stage IV --- Need advice

Postby hawkowl » Fri Dec 01, 2017 1:43 am

Hi AJQ...I have a cousin who lives overseas and is now more than 3 1/2 years out (and still NED) from HIPEC for appendix cancer with peritoneal spread. Wishing you similar success
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

AJQ
Posts: 25
Joined: Sun Jul 16, 2017 9:29 am
Location: CA

Re: Peri mets, Stage IV --- Need advice

Postby AJQ » Fri Dec 01, 2017 12:54 pm

hawkowl wrote:Hi AJQ...I have a cousin who lives overseas and is now more than 3 1/2 years out (and still NED) from HIPEC for appendix cancer with peritoneal spread. Wishing you similar success


Hi Hawkowl,

Thank you. I appreciate it.
Surgery was difficult but hoping to continue being NED.
53 yr, stage III adenocarcinoma of appendix(PD) and Cecum
5/16/17: LAP Appendix Removal
5/22/17: Diagnosed. T4 poorly differentiated with LVI
6/21/17: LAP RHC: 1/21 positive Lymph. T4N1M0
CEA 6/17: 1.0, 7/17: 1.0, 8/17: 1.0, 9/17: 2.0, 9/28: 2.0, 10/12: 1
7/27/17: started Xelox (Capox) cycles
10/17: CT scan. Multiple Peri and Pelvis mets
11/17: CRS/HIPEC. All nodules removed- low PCI
1/18: CT. 2 lung nodules. next CT on 4/24

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Peri mets, Stage IV --- Need advice

Postby Robino1 » Fri Dec 01, 2017 1:06 pm

I will be following your journey closely. I hope you stay NED for YEARS!!! :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

AJQ
Posts: 25
Joined: Sun Jul 16, 2017 9:29 am
Location: CA

Re: Peri mets, Stage IV --- Need advice

Postby AJQ » Fri Dec 01, 2017 5:43 pm

Robino1 wrote:I will be following your journey closely. I hope you stay NED for YEARS!!! :)


Thank you so much Robino1. Will keep updating you all.

AJ
53 yr, stage III adenocarcinoma of appendix(PD) and Cecum
5/16/17: LAP Appendix Removal
5/22/17: Diagnosed. T4 poorly differentiated with LVI
6/21/17: LAP RHC: 1/21 positive Lymph. T4N1M0
CEA 6/17: 1.0, 7/17: 1.0, 8/17: 1.0, 9/17: 2.0, 9/28: 2.0, 10/12: 1
7/27/17: started Xelox (Capox) cycles
10/17: CT scan. Multiple Peri and Pelvis mets
11/17: CRS/HIPEC. All nodules removed- low PCI
1/18: CT. 2 lung nodules. next CT on 4/24


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