Looking for HIPEC Experiences

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SisterinLaw
Posts: 4
Joined: Mon Oct 09, 2017 3:43 pm

Looking for HIPEC Experiences

Postby SisterinLaw » Mon Oct 09, 2017 3:54 pm

Hi All. I hope it is OK to post here even though the cancer I am inquiring about originated in the stomach. I am looking for any accounts of HIPEC experiences here.

My brother-in-law was just diagnosed with Stage IV Gastric (diffuse cell) spread to the peritoneum. I cannot find first hand accounts anywhere! So I am coming to this forum in the hopes that someone here may be kind enough to help.

He went to his FIRST ]oncologist appointment today, who handed him an article she wrote called "When Fighting Cancer is Not Worth It" and she told him straight out not to even consider it.

Since she is offering no other cure alternatives - -however faint the odds - - I want to see what I can find out. He and my sister have a little 7 year-old and we just cannot accept the dire diagnosis. MD Anderson has a gastric cancer-HIPEC trial accepting patients now for his very situation (mets to peritoneum, but no distant mets). But I fear she may have scared him off the idea.

Thank you so much!

Lee
Posts: 5185
Joined: Sun Apr 16, 2006 4:09 pm

Re: Looking for HIPEC Experiences

Postby Lee » Mon Oct 09, 2017 7:03 pm

Hi and welcome, so sorry for the reason you had to join.

I do not have personal experience with HIPEC, butt I know for many people on this forum it has put them in NEDville (No Evidence Detected). Dr. Kemeny with Sloan Kettering Memorial in New York City has really put this procedure on the map.

Good luck, I'm sure others will chime in soon.

Lee

Edit to add, I made a mistake with above statement. Dr. Kemeny does not work with HIPEC. Sorry for the confusion. Butt you are getting some good advice. Maia is one of our best.
Last edited by Lee on Tue Oct 10, 2017 4:39 pm, edited 1 time in total.
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Canada777
Posts: 35
Joined: Mon Mar 28, 2016 6:24 pm

Re: Looking for HIPEC Experiences

Postby Canada777 » Mon Oct 09, 2017 8:14 pm

Hi - Just wanted to let you know my partner had HIPEC. Unlike your situation we were told to consider it from the get go. It's my understanding that a surgeon won't do hipec unless they feel they can get all the cancer. But definitely speak with a surgeon NOT just an oncologist. The surgeon will know better about surgery than an oncologist. We got told no by a surgeon in Canada and found a surgeon in the US who did his surgery. The surgery itself was long...About 9 hours. However he had a higher amount of cancer they needed to resect. They did get it all out though during surgery. He Recovered well. I think it was 12 days in hospital and pain was well controlled. At home he took awhile to get his endurance back but that was expected. We had one trip a week or so after he was home due to a fluid build up but a drain for a few days fixed that. No other medical issues after surgery.

Hipec is a big surgery but I think the patient should weigh whether it is right for them. For us it was always the plan. He wanted a shot at a cure. This surgery was that only chance. Although in our case the cancer did return I really do think the surgery was still worth it. He got to be off chemo for a year and the cancer spot that has returned is small and another surgery to get that could still mean NED in his future.

I hope that one opinion didn't totally scare off your brother in law. If you have more questions please let me know. There are a few other people on this forum who have done hipec as well so hopefully they will chime in too.
BF dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX Jan-June 2016
4 month chemo break. Still only Peri mets.
Successful HIPEC Oct. 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis. FOLFIRI starting Sept 2017.

janklo
Posts: 1564
Joined: Wed Mar 03, 2010 11:10 pm
Facebook Username: JanetKlostermann

Re: Looking for HIPEC Experiences

Postby janklo » Mon Oct 09, 2017 9:13 pm

This is a blog I found awhile back of a woman with gastric cancer. I would definitely consult another oncologist for another opinion!

https://carmentotriumph.wordpress.com/2013/06/
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

debb
Posts: 151
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: Looking for HIPEC Experiences

Postby debb » Mon Oct 09, 2017 9:47 pm

Hi...I had hipec in August 2010. It is a tough surgery, but definitely worth it. I'd had a cyst on my ovary that was growing...it was cancerous. So the docs decided to take it out. In the short time that it took to then get me set up for surgery, the cyst broke open. This meant looks of "cancer fluid" was released in my abdomen. Even though the fluid was tested and deemed to contain no cancer cells, I pursued hipec. I am a patient at MSKCC, but they didn't offer this at their hospital at that time. So I went to Mt Sinai for the procedure. I had a great doc there and I recovered fairly quickly.
So definitely go for the 2nd opinion with the surgeon.
Good luck!
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
Break! One year of freedom
8/16 Folfiri & avastin..lung things again

User avatar
O Stoma Mia
Posts: 825
Joined: Sat Jun 22, 2013 6:29 am

Some old HIPEC threads -- 2008 - 2016

Postby O Stoma Mia » Tue Oct 10, 2017 2:12 am

Surgical opinion options? (January 2016)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53554

hipec (October 2015)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52696

HIPEC (September 2015)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52432

HIPEC (ers) - Compare Stories (August 2015)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52326

Turned down for HIPEC (July 2015)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52086

HIPEC (July 2015)
http://coloncancersupport.colonclub.com/viewtopic.php?t=52069

HIPEC (June 2015)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51858

HIPEC (May 2015)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51336

HIPEC and QOL (May 2015)
http://coloncancersupport.colonclub.com/viewtopic.php?t=51249

Looking for a HIPEC surgeon (April 2015)
http://coloncancersupport.colonclub.com/viewtopic.php?t=50963

Peritoneal mets, HIPEC, EPIC (March 2015)
http://coloncancersupport.colonclub.com/viewtopic.php?t=50479

Update on Hipec progress (March 2015)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50429

HIPEC treatment side effects (February 2015)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50209

Best Doctors For HIPEC (February 2015)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50079

Chemo After HIPEC
http://coloncancersupport.colonclub.com/viewtopic.php?t=48830

Need advice (hipec) (October 2014)
http://coloncancersupport.colonclub.com/viewtopic.php?t=48401

Chemo after HIPEC (August 2014)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=47573

How old were you when you had HIPEC? (August 2014)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=47488

Liver resection and HIPEC surgery is on (July 2014)
http://coloncancersupport.colonclub.com/viewtopic.php?t=47356

Limitations of Scan and Exploratory Laparoscopy After HIPEC (July 2014)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=47077

Stage 4 from India - looking for HIPEC experiences (July 2014)
http://coloncancersupport.colonclub.com/viewtopic.php?t=47055

information and questions about HIPEC (February 2014)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=45757

HIPEC as early as next week?? Whaat!!! :) (May 2014)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=46470

Week after HIPEC (August 2013)
http://coloncancersupport.colonclub.com/viewtopic.php?t=43305

HIPEC scheduled for the 29th (July 2013)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=42893

Back to reality - and HIPEC question (April 2013)
http://coloncancersupport.colonclub.com/viewtopic.php?t=41469

HIPEC-Is it always all or nothing? (January 2013)
http://coloncancersupport.colonclub.com/viewtopic.php?t=39326

HIPEC (November 2012)
http://coloncancersupport.colonclub.com/viewtopic.php?t=37834

Radiation VS HIPEC (September 2012)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=36324

HIPEC question (April 2011)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=21397

If you've had HIPEC, please help (November 2010)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=16029

New to Forum – HIPEC concerns (November 2008)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=5149

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stu
Posts: 589
Joined: Sat Aug 17, 2013 5:46 pm

Re: Looking for HIPEC Experiences

Postby stu » Tue Oct 10, 2017 3:42 am

Hi .
No experience of that procedure but I feel for your family . That's a rough way to tell anyone .
My mum swam against the tide eight years ago and she has no regrets .
Take care and well done you for trying to present both sides .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

User avatar
Maia
Posts: 2436
Joined: Fri Aug 24, 2012 8:00 am

Re: Looking for HIPEC Experiences

Postby Maia » Tue Oct 10, 2017 8:13 am

I'm sorry to hear about your brother in law. Can he travel for treatment, is he looking to have treatment in Chicago, only?
Do you know more about the genetic / mutations of the cancer? Immunotherapy, probably a trial, might offer other possibilities of treatment.

SisterinLaw
Posts: 4
Joined: Mon Oct 09, 2017 3:43 pm

Re: Looking for HIPEC Experiences

Postby SisterinLaw » Tue Oct 10, 2017 9:38 am

You all are so helpful!!! thank you for the research links and the personal experiences! I will read the old threads now!

I am here in NYC, my brother-in-law currently in Chicago but can go to Houston or come here for treatment....

User avatar
Maia
Posts: 2436
Joined: Fri Aug 24, 2012 8:00 am

Re: Looking for HIPEC Experiences

Postby Maia » Tue Oct 10, 2017 4:00 pm

SisterinLaw, I do understand the good intentions of his oncologist --some patients pursue HIPEC hoping it will be a cure, for certain cancers... and for most stage IV cancers, when they are not resectable, there is no current cure (only recently, with immunotherapies, doctors start to talk about 'long term remissions'/ durable responses). So, some doctors feel the need to confront them with such reality, while others won't say a word if they are not explicitly asked about prognosis/ timeline, etc.

Said that: everything changes, sometimes, from one month to the other, in terms of treatments.

In this case: the article she wrote is from 2012. Even if most of what she states is still true, in general terms, in the particular case of gastric cancer, many things happened. In 2014, at the National Institutes of Health (Bethesda, Maryland), a clinical trial, NCT00941655, finished and demonstrated the advantages of HIPEC for gastric cancer in certain cases. The article published:

J Surg Oncol. 2014 Sep;110(3):275-84. doi: 10.1002/jso.23633. Epub 2014 Jul 5.
Impact of maximal cytoreductive surgery plus regional heated intraperitoneal chemotherapy (HIPEC) on outcome of patients with peritoneal carcinomatosis of gastric origin: results of the GYMSSA trial.

Rudloff U1, Langan RC, Mullinax JE, Beane JD, Steinberg SM, Beresnev T, Webb CC, Walker M, Toomey MA, Schrump D, Pandalai P, Stojadinovic A, Avital I.
Author information
Abstract
BACKGROUND:
A prospective randomized trial was conducted to compare the impact of systemic chemotherapy versus multi-modality therapy (complete cytoreductive surgery (CRS), hyperthermic intraperitoneal chemotherapy (HIPEC), and systemic chemotherapy) on overall survival (OS) in patients with gastric carcinomatosis.
METHODS:
Patients with measurable metastatic gastric adenocarcinoma involving the peritoneum, and resectable to "no evidence of disease" were randomized to gastrectomy, metastasectomy, HIPEC, and systemic FOLFOXIRI (GYMS arm) or FOLFOXIRI alone (SA arm).
RESULTS:
Seventeen patients were enrolled (16 evaluable); 7 of 9 patients in the multi-modality GYMS arm achieved complete cytoreduction (CCR0). Median OS was 11.3 months in the GYMS arm and 4.3 months in the SA arm. Four patients in the GYMS arm survived >12 months, 2 patients close to 2 years at last follow-up, and 1 patient more than 4 years, with 2 of these patients still alive. No patient in the SA arm lived beyond 11 months. All patients surviving beyond 12 months in the surgery arm achieved complete cytoreduction and had an initial Peritoneal Cancer Index (PCI) of ≤ 15.
CONCLUSION:
Maximal cytoreductive surgery combined with regional (HIPEC) and systemic chemotherapy in selected patients with gastric carcinomatosis and limited disease burden can achieve prolonged survival. http://onlinelibrary.wiley.com/doi/10.1 ... 562.f04t03


Based on that and other results from ongoing research, there is a new ongoing, recruiting trial at the NIH:
Heated Intraperitoneal Chemotherapy and Gastrectomy for Gastric Cancer With Positive Peritoneal Cytology NCT03092518 https://clinicaltrials.gov/ct2/show/NCT03092518

*However*, patient need to have received a first line of chemo first. BUT there is other important trial at the NHI, that I would recommend: they are taking samples to find tailored, personalized treatments:

Prospective Evaluation and Molecular Profiling in People With Gastric Tumors: NCT03027427 https://clinicaltrials.gov/ct2/show/NCT03027427
Determining molecular profile, mutations, etc. is *fundamental*, these days. It is fundamental for other important immunotherapy trials ongoing at NIH (like NCT01174121, Immunotherapy Using Tumor Infiltrating Lymphocytes for Patients With Metastatic Cancer, or NCT03190941, Administering Peripheral Blood Lymphocytes Transduced With a Murine T-Cell Receptor Recognizing the G12V Variant of Mutated RAS in HLA-A*1101 Patients ) BUT also just because the standard of care is changing, month to month. For example, one month ago, there was not immunotherapy approved for gastric cancer. But... past September 22th:

The US Food and Drug Administration (FDA) today approved pembrolizumab (Keytruda, Merck) for treatment of gastric or gastroesophageal junction cancer. Pembrolizumab becomes the first immunotherapy approved in the United States for gastric cancer.

The approval is limited to patients who have had at least two previous lines of chemotherapy for these recurrent locally advanced or metastatic adenocarcinomas that express programmed death receptor-ligand 1 (PD-L1).


Again, your brother in law can't get Keytruda right now if he has not prior lines of treatment, per the standard of care. BUT that time will come. And if he wants to try it right now, he even could opt out from more standard treatment --chemo-- and look for a clinical trial where get anti PD-1 --immunotherapy--, like this in Chicago:
A Phase 1/2 Study Exploring the Safety, Tolerability, and Efficacy of Pembrolizumab (MK-3475) in Combination With Epacadostat (INCB024360) in Subjects With Selected Cancers (INCB 24360-202 / MK-3475-037 / KEYNOTE-037/ ECHO-202) https://clinicaltrials.gov/ct2/show/study/NCT02178722
or this at Sloan Kettering NY: A Study to Test Combination Treatments in Patients With Advanced Gastric Cancer (FRACTION-GC) https://clinicaltrials.gov/ct2/show/study/NCT02935634

Hope this helps.

Steph20021
Posts: 492
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Looking for HIPEC Experiences

Postby Steph20021 » Thu Oct 12, 2017 9:17 pm

I had hipec in Toronto and was NED and off chemo for 9 months before the cancer came back. Tough recovery but no regrets, Id do it again if I could.
Happy to answer any questions.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
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, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Currently stable suce Aug/16- on folfiri

SisterinLaw
Posts: 4
Joined: Mon Oct 09, 2017 3:43 pm

Re: Looking for HIPEC Experiences

Postby SisterinLaw » Fri Oct 13, 2017 10:34 am

Steph, Maia and all others. Thank you! So so helpful and informative. Mr brother-in-law arrives this weekend for appointments at MSK. Dr Janjigian (oncologist)
And this has helped be prepare questions for her.
But I think a surgeon will be best to discuss HIPEC with. No surgical appointment though at MSK because of his Stage IV.
So hopefully he will agree to go to Houston to at least talk over HIPEC.
Steph and Canada, I may have questions for you! Thank you!!

User avatar
Maia
Posts: 2436
Joined: Fri Aug 24, 2012 8:00 am

Re: Looking for HIPEC Experiences

Postby Maia » Fri Oct 13, 2017 12:50 pm

He'll be at the best hands at MSK

Look for Dr Garret Nash 212-639-8668

https://www.mskcc.org/cancer-care/doctors/garrett-nash

Even if this is for CRC and appendix, see this trial: ICARuS Post-operative Intraperitoneal Chemotherapy (EPIC) and Hyperthermic Intraperitoneal Chemotherapy (HIPEC) After Optimal Cytoreductive Surgery (CRS) for Neoplasms of the Appendix, Colon or Rectum With Isolated Peritoneal Metastasis (ICARuS) https://clinicaltrials.gov/ct2/show/NCT01815359
https://www.mskcc.org/videos/hypertherm ... lon-rectum
He's the Principal investigator.

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betsydoglover
Posts: 874
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Looking for HIPEC Experiences

Postby betsydoglover » Fri Oct 13, 2017 1:17 pm

I have not had HIPEC although I know 2 people who have had it. Dr. Sugerbaker at Washington Hospital Center (in DC) developed the procedure. He and 2 other surgeons perform the surgery there. It is a good place to look into if you live anywhere near DC or can travel there.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
6 cycles Xeloda + Avastin,
NED (PET every 3 mo)
Avastin only 10/09-5/11

SisterinLaw
Posts: 4
Joined: Mon Oct 09, 2017 3:43 pm

Re: Looking for HIPEC Experiences

Postby SisterinLaw » Mon Oct 16, 2017 12:47 pm

O Stoma Mia, I tried to respond to your PM but I do not have messaging privileges on the forum! But Thank you!


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