Reoccurance Questions/Help

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tater
Posts: 121
Joined: Wed Jul 19, 2017 5:53 pm

Reoccurance Questions/Help

Postby tater » Tue Nov 26, 2019 6:57 pm

So my wife had been NED for awhile. Early this spring we started to notice some narrowing around her right ureter. The CT scan said that it was scarring. During the summer her CEA kept rising but still within normal. In October we received the results of the PET scan and it showed uptake at this area. On Oct. 30 they removed the ureter and a 2cm x 1.5 cm spot. The surgeon said that it had adhered to the main artery that feeds the right leg and he removed all visible signs of the cancer. Pathology supported that the margin in this area was not clear. It was a very tricky surgery and were luck to find a surgeon to give it a try. Now we stat FOLFIRI 12 rounds on Monday. Who has had success with chemo killing the remainder of the tumor once removed and margins are not clear? This is not a blood rich area like the liver. Are their any clinical trials worth going on? Are their any new surgical options? If this is within the field of radiation from the first time can she receive any other type of radiation? Just looking for help and hope.

thanks
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

WarriorSpouse
Posts: 214
Joined: Tue Aug 16, 2016 9:02 pm

Re: Reoccurance Questions/Help

Postby WarriorSpouse » Wed Nov 27, 2019 2:33 am

Hey Tater,
I am sorry to read of what you guys are going through. It definitely sounds like a unique situation, one I have not read about often on this blog. The only suggestion I have is to seek an opinion from a major cancer center. Not sure where you guys are located and how close they are to you, but they have the most updated treatment plans to include chemo and radiation. The more information you share with them, the better the outcomes for treatment plans and next steps. I would assume there are regular protocols that need to still be exhausted prior to any clinical trials being in play. If you can share your general location, others can chime in here for suggestions for a second opinion too.
All the best.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

tater
Posts: 121
Joined: Wed Jul 19, 2017 5:53 pm

Re: Reoccurance Questions/Help

Postby tater » Wed Nov 27, 2019 11:09 am

WarriorSpouse wrote:Hey Tater,
I am sorry to read of what you guys are going through. It definitely sounds like a unique situation, one I have not read about often on this blog. The only suggestion I have is to seek an opinion from a major cancer center. Not sure where you guys are located and how close they are to you, but they have the most updated treatment plans to include chemo and radiation. The more information you share with them, the better the outcomes for treatment plans and next steps. I would assume there are regular protocols that need to still be exhausted prior to any clinical trials being in play. If you can share your general location, others can chime in here for suggestions for a second opinion too.
All the best.
WS



We are in Northern Utah
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

WarriorSpouse
Posts: 214
Joined: Tue Aug 16, 2016 9:02 pm

Re: Reoccurance Questions/Help

Postby WarriorSpouse » Wed Jan 01, 2020 1:56 pm

Anyone here on Colon Talk, from Northern Utah, that has a suggestion for a major cancer care provider.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

Rock_Robster
Posts: 450
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Reoccurance Questions/Help

Postby Rock_Robster » Thu Jan 02, 2020 6:58 am

WarriorSpouse wrote:Anyone here on Colon Talk, from Northern Utah, that has a suggestion for a major cancer care provider.
WS

I suspect Huntsman in SLC is going to be the closest NCI-designated centre, which would be a good place to start.
Male 37; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed a liver spot
08-11/19 - FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 - Liver resection #2
02/20 - Ileostomy reversed

Punky44
Posts: 431
Joined: Mon Oct 01, 2018 4:29 pm

Re: Reoccurance Questions/Help

Postby Punky44 » Fri Jan 03, 2020 1:59 am

Tater, how are you and your wife doing?
Caregiver to my amazing mom (68)
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
CEA 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

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

martd
Posts: 118
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Reoccurance Questions/Help

Postby martd » Fri Jan 03, 2020 8:26 am

Mayo clinic in Phoenix has proton beam therapy. I don't even know if that would be an option for you but might be worth a call. They have very convenient accomodations for out of town patients. There's even a large Marriott residents inn on their campus.

Also I've heard alot of good things about Huntsman Cancer that Rock mentioned.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

WarriorSpouse
Posts: 214
Joined: Tue Aug 16, 2016 9:02 pm

Re: Reoccurance Questions/Help

Postby WarriorSpouse » Tue Jan 07, 2020 2:53 am

Bumping-up to hear an update or any other suggestions for cancer centers in northern Utah.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot


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