Looking into HIPEC

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Shana
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Location: Sonoma, CA

Re: Looking into HIPEC

Postby Shana » Thu Mar 01, 2018 10:37 pm

Hi Robin,

Following this post and hoping this is a procedure that will beneit you long term. It sure sounds like a possible road to Nedville. Good luck with your research and you know I'm wishing you all the best as you search for the right path forward!

Hugs,

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

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bitchslapped
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Location: PNW/USA

Re: Looking into HIPEC

Postby bitchslapped » Fri Mar 02, 2018 9:07 pm

Robin, Here's a link to a thread where Jaques provides outside links + a link where our O Stoma Mia has posted links to various HIPEC threads:
viewtopic.php?f=1&t=57534&p=467228&hilit=hipec#p467228

You can also do a search w/HIPEC in the search box. As far as losing the tabs on your computer, those tabs may still be in your "search history" for that day or that week or month if you click on "history" tab on your computer of sites visited.

Dr. Sugerbaker is in Washington D.C., not Washington State. I did a lot of research on behalf of my BFF & found hospitals that list their stats on HIPEC do so very sparingly. MSKCC has only been doing HIPEC about the last 15 years, surprisingly & Johns Hopkins was not recommended through contacts my BFF had.

Though my BFF could have had HIPEC locallyin OR, & a very experienced surgeon in WA State, the search was for a highly experienced surgeon, specialized in appendix cancer + a hospital that was highly experienced & set up for aftercare & PUBLISHED their stats. Not easy to find either one. I was able to find TWO hospitals that published their stats: Dr. Andrew Lowy/UCSD (San Diego) & Dr. David Bartlett/UPMC (Pittsburg). I also searched reviews such as Vitals.com + PubMed for various doctor's publications + YouTube videos of HIPEC conferences & other cancer forums. Dr. H. Richard Alexander Rutgers Cancer Institute/New Brunswick, NJ stood out to me as well.

It's really a tough decision b/c you want a great surgeon & hospital set up to handle any post-surgical complications & there was complications (AFIB) for my BFF as outlined in my thread about her experience. During initial consult BFF took a tour of hospital ward dedicated to cancer patients, in particular HIPEC patients had access to all of the latest & greatest equipment to handle any complication incl heart on the floor. So it's not that it was rated a top hospital, but their HIPEC patients got top care. Also look for good phone communication through staff & doc's NP. Was NOT good locally to even get an initial appointment for consult + locally they had only been doing HIPEC 4 yrs, however they were trained by Dr. Lowy & staff we found out after her surgery.

This post is from a member who discusses Emory/Atlanta stats:
viewtopic.php?f=1&t=59140&p=467764&hilit=hipec#p467764

Staying w/your kids 2 hrs away may not be an option if the doc wants you staying near the hospital for a few wks post surgery as in my friend's case. It would make it easier for your kids to come to you however. You should be able to find someone well qualified on your side of the country. A short flight home sounds awfully good post HIPEC I must admit. BFF was 3 wks in San Diego before flying home so wasn't bad @ all according to her.


Best Wishes on your search. Keep us updated.
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
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

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Robino1
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Location: Florida

Re: Looking into HIPEC

Postby Robino1 » Sat Mar 03, 2018 8:12 am

Thank you so very much for this invaluable information! It is so hard to find info, as you stated. You are an amazing researcher :). Your BFF is super blessed to have you in her life. I am too!!! :D
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

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peanut_8
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Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Looking into HIPEC

Postby peanut_8 » Sat Mar 03, 2018 9:48 am

Robino1 wrote:Thank you so very much for this invaluable information! It is so hard to find info, as you stated. You are an amazing researcher :). Your BFF is super blessed to have you in her life. I am too!!! :D


Seconding this!!!
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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Shana
Posts: 397
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Looking into HIPEC

Postby Shana » Sat Mar 03, 2018 1:32 pm

peanut_8 wrote:
Robino1 wrote:Thank you so very much for this invaluable information! It is so hard to find info, as you stated. You are an amazing researcher :). Your BFF is super blessed to have you in her life. I am too!!! :D


Seconding this!!!


I'm thirding this! What awesome information and awesome people on this forum!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

Aynne
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Joined: Sat Mar 03, 2018 10:38 pm
Facebook Username: Ann Flagg Campbell
Location: Maine

Re: Looking into HIPEC

Postby Aynne » Sat Mar 03, 2018 10:45 pm

Robino1 wrote:I tried to look up Skifletcher as that name was mentioned as to going through it and being successful. I can't find him in the search function. Would love to know who did his.

I'm trying to find the best surgeon to do HIPEC so I can consult to see if I am a candidate. Google search is not helping me much. I must be doing something wrong. I had tabs open to save them then my computer decided to update. On one of the updates, it lost all my tabs. I know, I should have saved them in favorites. Live (God I'm trying) and learn.

I'm in the USA so out of country is not an option. I am willing to travel within the US. I've come to the conclusion that oncologists don't necessarily like to transfer their patients to surgeons. Yeah, I'm a bit jaded right now.

I feel as if I'm at a crossroad and have no clue how to read the map.

Cleveland Clinic? I could stay with my kids in the Detroit area, they are about 2 hours from Cleveland.

So very lost in this maze...


I had hipec done in December in Maine, Dr. Timothy Fitzgerald at Maine medical center. He also reversed my ileostomy. I highly recommend him. You can tell him I referred you.

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bitchslapped
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Location: PNW/USA

Re: Looking into HIPEC

Postby bitchslapped » Sun Mar 04, 2018 9:58 pm

Thanks for the Kudos girls. Told BFF that I would walk this walk w/her all the way. Happy to say enjoyed lunch w/her several weeks ago & few days ago & maybe again next week! She & DH both very grateful.

So Robin, according to your signature looks like you are doing very well on FOLFOX. Has your onc recommended HIPEC as a possible option for you or are you just entertaining the possibility for yourself down the road? It's good to research your options early, most definitely. Adjuvant chemo for colon cancer post HIPEC seems to be recommended due to higher possibility of recurrence than appendix cancer. For my BFF, HIPEC was the only option after removal of appendix. No chemo, no clinical trials available...just surgery.

I did spend a lot of time on PUBMED for research on HIPEC + Google Scholar. PUBMED in addition to HIPEC search, allows search by doc's names can be performed to see how many research papers they authored, coauthored in addition to checking their bios on their own or hospital affiliated websites which sometimes lists # of publications & titles. I was looking for highly specialized researchers vs somebody who "does" HIPEC. Again, I was looking on behalf of someone else who had rare appendix cancer. From the papers I read, a surgeon who has performed 200-250 HIPEC procedures w/b considered proficient.


Best Wishes All
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
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

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Robino1
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Location: Florida

Re: Looking into HIPEC

Postby Robino1 » Mon Mar 05, 2018 8:29 am

My oncologist rolled her eyes when I mentioned HIPEC at the beginning of my journey. It was a fleeting eye roll but as I'm a people watcher, I did catch it.

I'm researching in case FOLFOX fails. From what I'm reading, I have a better chance of being a candidate if I have less seeding so better to go in before it starts multiplying, if it decides to do so.

I'll know more after the next scan. My CEA is starting to go in the wrong direction. Won't know exactly what's going on until the scan. Hopefully an anomaly is causing the rise and not more cancer.

Gathering names is an important step in keeping ahead of this. I'll have a plan in place should I need it.
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

MattAZ
Posts: 1
Joined: Tue Mar 06, 2018 4:52 pm

Re: Looking into HIPEC

Postby MattAZ » Tue Mar 06, 2018 5:02 pm

If you are still looking, I had HIPEC 6 years ago in Pittsburgh from Dr Matthew Holtzman at UMPC. Great doctor. My initial surgeon in Arizona thought HIPEC was a waste of time even though I was having re-occurrences every 6-9 months over a few year period. I have not had a peritoneal met since the HIPEC procedure in 2012.

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GrouseMan
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Re: Looking into HIPEC

Postby GrouseMan » Tue Mar 06, 2018 5:53 pm

MattAZ wrote:If you are still looking, I had HIPEC 6 years ago in Pittsburgh from Dr Matthew Holtzman at UMPC. Great doctor. My initial surgeon in Arizona thought HIPEC was a waste of time even though I was having re-occurrences every 6-9 months over a few year period. I have not had a peritoneal met since the HIPEC procedure in 2012.


I second these folks - Ive heard tyhat they are the best in the country at doing this technique. I asked my wifes oncologist that didn't think she was a candidate becuase she had Liver and Spleen mets, that if she were ever to become a candidate where she should go, and he said there. He wasn't a big advocate for this procedure becuase he didn't see a benifit for most people, as it usually adversly effected QOL, and often failed. But at least he had done his homework.

Even though my wife passed away last June, I still spend some time looking into treatments for Peri mets, and what is being done. Recently I found a monograph from 2012 discussing many aspects of the HIPEC procedure while searching around for information. I have the PDF file I downloaded but not the original link. If anyone is specifically interested I'll pass the PDF file on to you. Its technical but might help you in your discussions with your oncology team.

Regards,

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

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Robino1
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Re: Looking into HIPEC

Postby Robino1 » Tue Mar 06, 2018 6:28 pm

GrouseMan wrote:
MattAZ wrote:If you are still looking, I had HIPEC 6 years ago in Pittsburgh from Dr Matthew Holtzman at UMPC. Great doctor. My initial surgeon in Arizona thought HIPEC was a waste of time even though I was having re-occurrences every 6-9 months over a few year period. I have not had a peritoneal met since the HIPEC procedure in 2012.


I second these folks - Ive heard tyhat they are the best in the country at doing this technique. I asked my wifes oncologist that didn't think she was a candidate becuase she had Liver and Spleen mets, that if she were ever to become a candidate where she should go, and he said there. He wasn't a big advocate for this procedure becuase he didn't see a benifit for most people, as it usually adversly effected QOL, and often failed. But at least he had done his homework.

Even though my wife passed away last June, I still spend some time looking into treatments for Peri mets, and what is being done. Recently I found a monograph from 2012 discussing many aspects of the HIPEC procedure while searching around for information. I have the PDF file I downloaded but not the original link. If anyone is specifically interested I'll pass the PDF file on to you. Its technical but might help you in your discussions with your oncology team.

Regards,

GrouseMan


I truly appreciate it. I would love to have that file. I will PM you my email address.

Thank you!

When we are faced with the possibility of dying or quality of life, I am pretty sure I will chose a lower quality of life over death. ;)
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

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O Stoma Mia
Posts: 1354
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Location: Traveling abroad

Re: Looking into HIPEC

Postby O Stoma Mia » Wed Mar 07, 2018 12:51 am

GrouseMan wrote:.. Recently I found a monograph from 2012 discussing many aspects of the HIPEC procedure while searching around for information. I have the PDF file I downloaded but not the original link...

Is this the original link you were referring to? (This one is only 9 pages long, so it's not really a monograph.)

Cytoreductive Surgery Plus Hyperthermic Perioperative Chemotherapy for Selected Patients with Peritoneal Metastases from Colorectal Cancer: A New Standard of Care or an Experimental Approach?
Paul H. Sugarbaker
Gastroenterology Research and Practice
Volume 2012 (2012), Article ID 309417, 9 pages

https://www.hindawi.com/journals/grp/2012/309417/

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GrouseMan
Posts: 750
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Looking into HIPEC

Postby GrouseMan » Wed Mar 07, 2018 9:10 am

O Stoma Mia wrote:
GrouseMan wrote:.. Recently I found a monograph from 2012 discussing many aspects of the HIPEC procedure while searching around for information. I have the PDF file I downloaded but not the original link...

Is this the original link you were referring to? (This one is only 9 pages long, so it's not really a monograph.)

Cytoreductive Surgery Plus Hyperthermic Perioperative Chemotherapy for Selected Patients with Peritoneal Metastases from Colorectal Cancer: A New Standard of Care or an Experimental Approach?
Paul H. Sugarbaker
Gastroenterology Research and Practice
Volume 2012 (2012), Article ID 309417, 9 pages

https://www.hindawi.com/journals/grp/2012/309417/


Nope - Mine is 131 pages long and contains that paper you cite as one of many discussing the Peritoneal Metastases. Its title is Peritoneal Metastases - Guest Editors Yataka Yonemura, Yan Li, Paul H. Sugarbaker and Pomoiliu Piso. Publish by the Gastroenterology Research and Practice I think as a special issue perhaps bring many papers together.

Regards,

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

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

Re: Looking into HIPEC

Postby Robino1 » Wed Mar 07, 2018 9:49 am

I have a lot of reading to do. :shock: ;)

I'm hoping they have perfected things since 2012. The survival rates are dismal. Fewer survive than get 'cured'.

Much thinking needs to happen on my end....

Butt then again, survival rates on peritoneal spread is damn dismal also.

Right now I just feel screwed.
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

ppanamared
Posts: 12
Joined: Wed Jun 28, 2017 5:47 pm

Re: Looking into HIPEC

Postby ppanamared » Wed Mar 07, 2018 6:45 pm

Yeah im feeling the same way as you..they want to throw low odds trials at me but when you bring up hipec which might also be low odds but at least a reset for more time..ohh you will have abdominal scarring and other excuses. Oh yes save those muscles, ill need those alot when im dead in 6 months. The more people I ask, the more different opinions i get, so just keep getting more opinions i guess lol.


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