Opinions on HIPEC surgeons and what to expect post-surgery

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fighter46
Posts: 2
Joined: Sun Mar 05, 2017 7:20 am

Opinions on HIPEC surgeons and what to expect post-surgery

Postby fighter46 » Mon Mar 27, 2017 10:41 pm

My 46 year old husband was diagnosed on 2/17/17 with stage IV colon cancer (signet cell) with peritoneal mets. No mets found anywhere else. My husband got a colonoscopy after having some stomach pain that was persistent but not debilitating; a 4 cm mass was found in the cecum, which was confirmed cancerous. We were of course devastated by the news as we have three young children under the age of 10. Now we have sprung into action and I found this board which has been helping me so much. I'm trying to understand options and would love opinions from those in this community.

Quick bio:
* My husband just finished his second round of Folfax/Avastin and is tolerating it reasonably well.
* We have visited with two local surgeons in Texas and here's what we've been told:

1. Dr. Rebecca Wiatreck (Texas oncology, local option) - 3 months of Folfax/Avastin followed by cytoreductive surgery/HIPEC.
2. Dr. Keith Fournier (M.D. Anderson, local but a few hours drive) - 6 months of Folfax/Avastin, followed by cytoreductive surgery/HIPEC *IF* hubby appears to be a good candidate based on response to chemo

We also reached out to Dr. Paul Sugarbaker (D.C. - a bit of a hike from our home in Texas) and just heard back that he would operate on hubby and wants to schedule a in-office visit in the coming weeks. He also recommends 3 months of Folfax/Avastin followed by cytoreductive surgery/HIPEC.

Here's what I'd like to know:
1. Does anyone have any experience with the surgeons listed above? Feel free to PM me if you don't want to post on the board.
2. Opinions on using a local doctor versus a doctor with more experience?
3. What can we expect from the HIPEC procedures as far as complications?

Thanks all!

User avatar
Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Opinions on HIPEC surgeons and what to expect post-surgery

Postby Jacques » Tue Mar 28, 2017 4:21 am

Here's a blog entry that discusses the HIPEC decision process. You could start here to get some idea of what to expect.

https://julieyipwilliams.wordpress.com/2014/02/28/the-decision-and-more/

Also ... there appear to be about 9 HIPEC surgeons in Texas

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57534&p=453642C#p453642
Last edited by Jacques on Tue Mar 28, 2017 8:15 am, edited 1 time in total.

Tim UK
Posts: 76
Joined: Fri Jun 12, 2015 1:05 am

Re: Opinions on HIPEC surgeons and what to expect post-surgery

Postby Tim UK » Tue Mar 28, 2017 6:24 am

Hi

Welcome to the board. This has been an invaluable resource for me and many others. I am two years post stage 4 diagnosis, 45yo, two kids 11 and 8, so I really feel for you and your husband. I have posted a few times on HIPEC so you might want to click on my name link, and look at those.

In summary, it is a very aggressive surgery and it's important not to underestimate this. Recovery is tough and needs mental as well as physical fortitude. I'd strongly recommend that your husband do whatever he can to get or stay cardio vascular fit (jogging, walking, biking etc.) beforehand. I realise of course that this may not be possible.

The surgery is only viable or recommended in cases where the practitioner is confident of removing all macroscopic tumour. If there is any left behind (other than the micro, which is hopefully dealt with by the heated chemo) then it will regrow.

Personally I would suggest you investigate some of the genetic/kinase strategies or new immunotherapies before going down the HIPEC path. Although durability of these is still not perfect, the magnitude of disease reduction can be substantial if it works at all, which might create a more optimal surgical setting.

Best wishes to you both.

Tim
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy
05/15 Dx st 3 T4N2M0 @43
kids: now 13, 10
BRAFm mucinous - KRASw
06/15 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF triplet (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: range 16;650 to 1;36 back to 4;135
8/16 progression
10/16-6/18 : NCT02650713
7/18-9/18 : anti-GITR; ERK inhib
10/18-4/19: folfoxiri+avastin
7/19-9/19 enco+cetux+Bini
10-19 starting regonivo

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Opinions on HIPEC surgeons and what to expect post-surgery

Postby ams5796 » Tue Mar 28, 2017 10:11 am

You may want to search Fournier on this board. He was well loved by an old friend of mine named Kellie who posted a bit about him. He sounded excellent.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

fighter46
Posts: 2
Joined: Sun Mar 05, 2017 7:20 am

Re: Opinions on HIPEC surgeons and what to expect post-surgery

Postby fighter46 » Tue Mar 28, 2017 4:12 pm

Thanks, Tim! I have not heard of genetic/kinase strategies or new immunotherapies. I searched the board but am not finding much. Can you tell me more? We live in Austin, Texas and saw there was something at MD Anderson? Any information is greatly appreciated.

Tim UK
Posts: 76
Joined: Fri Jun 12, 2015 1:05 am

Re: Opinions on HIPEC surgeons and what to expect post-surgery

Postby Tim UK » Mon Apr 03, 2017 2:27 pm

Hi

Welcome to the board. This has been an invaluable resource for me and many others. I am two years post stage 4 diagnosis, 45yo, two kids 11 and 8, so I really feel for you and your husband. I have posted a few times on HIPEC so you might want to click on my name link, and look at those.

In summary, it is a very aggressive surgery and it's important not to underestimate this. Recovery is tough and needs mental as well as physical fortitude. I'd strongly recommend that your husband do whatever he can to get or stay cardio vascular fit (jogging, walking, biking etc.) beforehand. I realise of course that this may not be possible.

The surgery is only viable or recommended in cases where the practitioner is confident of removing all macroscopic tumour. If there is any left behind (other than the micro, which is hopefully dealt with by the heated chemo) then it will regrow.

Personally I would suggest you investigate some of the genetic/kinase strategies or new immunotherapies before going down the HIPEC path. Although durability of these is still not perfect, the magnitude of disease reduction can be substantial if it works at all, which might create a more optimal surgical setting.

Best wishes to you both.

Tim
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy
05/15 Dx st 3 T4N2M0 @43
kids: now 13, 10
BRAFm mucinous - KRASw
06/15 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF triplet (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: range 16;650 to 1;36 back to 4;135
8/16 progression
10/16-6/18 : NCT02650713
7/18-9/18 : anti-GITR; ERK inhib
10/18-4/19: folfoxiri+avastin
7/19-9/19 enco+cetux+Bini
10-19 starting regonivo

Dan95
Posts: 10
Joined: Mon Sep 12, 2016 12:27 pm

Re: Opinions on HIPEC surgeons and what to expect post-surgery

Postby Dan95 » Tue Apr 04, 2017 1:08 pm

I'm going in for my HIPEC on the 13th. My surgeon is Dr Wasif at the Phoenix campus of Mayo clinic. I'll let you know how it goes, probably around May 1st from what I hear.
64 yo Male
Stage IV adenocarcinoma SRC
Diagnosed 08/16
CEA: 9/16- 32.6, 10/21- 23.7, 11/18- 21.8 12/16 24.4 5/17 30.0
Neoadjuvent Folfox start 09/23
CT 12/16 tumor modestly reduced, but Pulmonary Embolism discovered. Start Lovenox
3/17 Right Hemicolectomy scheduled but aborted. HIPEC scheduled. Loop ileostomy.
4/17 Right hemi, duodenum resection, numerous tumor removed from peritinium, HIPEC delayed.
6/17 Start folfiri

Tim UK
Posts: 76
Joined: Fri Jun 12, 2015 1:05 am

Re: Opinions on HIPEC surgeons and what to expect post-surgery

Postby Tim UK » Thu Apr 06, 2017 3:13 am

Sorry to be slow answering ...

I mean MEK inhibitors, EGFR inhibitors, BRAF inhibitors and the like. I was on a combination of dabrafenib, panitumumab and trametinib. The mechanism of action is to stop the expression of mutations in the genes, which cause the cells to multiply. There are numerous trials ongoing which combine differing kinase inhibitors.

I'd suggest you raise the topic with your oncologist as my explanation will probably be clumsy and (worse) maybe not appropriate to your husband's case.

Best wishes
Tim
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy
05/15 Dx st 3 T4N2M0 @43
kids: now 13, 10
BRAFm mucinous - KRASw
06/15 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF triplet (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: range 16;650 to 1;36 back to 4;135
8/16 progression
10/16-6/18 : NCT02650713
7/18-9/18 : anti-GITR; ERK inhib
10/18-4/19: folfoxiri+avastin
7/19-9/19 enco+cetux+Bini
10-19 starting regonivo

Julie YW
Posts: 170
Joined: Tue Aug 27, 2013 2:25 am
Facebook Username: Julie.yip-williams

Re: Opinions on HIPEC surgeons and what to expect post-surgery

Postby Julie YW » Fri Apr 07, 2017 8:53 am

I had HIPEC 3 years ago. A link to my blog post about hipec and the rest of my cancer experience was shared above. I would hesittte over sugarbaket just because he's old (although obviously he pioneered HIPEC). My HIPEC surgeon and others have told me you never want someone to operate on you who is in the first 10 years or last 10 years of his career. It's a serious enough surgery that I would take this advice under consideration
DX July 2013, 37yo
12 of 68 LN
Stage IV w/ drop peri met
Folfox 8/12/13
Clean scans 1/24/14
Rising CEA 2/13/14
HIPEC 3/13/14
Folfiri 4/21/14
Recurrence in lungs 12/19/14
Xeloda & Avastin
Follow my blog: http://julieyipwilliams.wordpress.com/about/

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Opinions on HIPEC surgeons and what to expect post-surgerym

Postby Steph20021 » Sat Apr 08, 2017 12:38 am

The worst part of the HIPEC recovery for me was having an ng tube for 9 or 10 days because my bowels weren't moving yet. I obviously wasn't allowed to,eat or drink anything during this time and all I wanted was to drink. I also had to have ice packs under my armpits because I was so hot all the time, though maybe this was from the complete hysterectomy I got as part of the Hipec. Anyway, it gave me 9 months of NED and being off chemo for which I am grateful.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

Ellen66
Posts: 2
Joined: Sun Apr 23, 2017 1:26 pm

Re: Opinions on HIPEC surgeons and what to expect post-surgery

Postby Ellen66 » Sat Apr 29, 2017 11:35 am

I live in Canada so I can't comment on surgeons. But it's true the surgery is very serious. I had surgery Aug 25th, 2016. The worst part has been the weight loss. Over 60 pounds! I've finally leveled off at 103 lbs, and look like a scarecrow. I had to have a ileostomy (sp?) done at the same time, so that is part of my problem. They were always pushing me to drink Boost etc. (yuck) but I don't think they pushed drinking a lot of water. I ended up with a bad kidney infection. Unfortunately, more cancer was found when they went in, so it was bound to come back. Now I'm on Folfiri and the Irinotecan has taken my hair! I have a decent appetite still, hope it continues. Can't afford to lose more weight. ( PS A new fruit version of Boost isn't bad at all!) Most people level off and then will slowly gain some weight. Hang in there, it's tough.


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