Would like to hear from those who have had Surgery & HIPEC..

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mslaurie
Posts: 18
Joined: Sun May 19, 2019 7:04 pm

Would like to hear from those who have had Surgery & HIPEC..

Postby mslaurie » Sat Aug 03, 2019 4:58 pm

Hello,

Just wondering how well HIPEC and cytoreductive surgery actually work. So would like to hear "real" stories, success or otherwise from those who have had it done or who are or have been the caregivers.

Pro's and con's.

*How soon after the surgery was a recurrence?
* IF no recurrence how long have you been NED?
* Still on chemo after for maintenance after the surgery?
* Any complications experienced?
* Did you have colon removed and jpouch put in or other?

DH is a candidate to have done about 4 months (currently has peri mets and two less then 1cm mets to liver). The surgeon performing the procedure has done over 500 of these procedures basically its his main career/profession.

Surgeon said slight chance of cure but said 2-5 years life extension would be conceivable said cure is higher for appendix cancer (75-80%) but not so for colon.

When you google you get different stats all over the place would rather hear from actual people who have had it done or the caregiver of someone who had it done.

Thanks much.
I am Caregiver to my Husband
Oct 2009 stage IIb
Sept 2009 - Ifoot colon removed
NED since 2009 until April 2019
Clear Scan Dec 2018 = NED -Clear colonoscopy March 2019
Routine annual chest xray April 2019 (lungs fine liver show as abnormal)
May 2019 Ultrasound, CT scans confirm recurrence Peri and liver mets with ascites. Stage 4C
May, June, July 2019 OXI and Xeloda (1st cycle, 2nd and 3rd cycle)
July met with surgeon (Candidate for cytoreduction surgery and HIPEC) - 4 months till surgery.

Pyro70
Posts: 155
Joined: Mon Jan 21, 2019 4:25 pm

Re: Would like to hear from those who have had Surgery & HIPEC..

Postby Pyro70 » Sun Aug 04, 2019 7:11 pm

I would look at the Prodige 7 trial results on HIPEC. It basically says HIPEC has no benefit but CRS can extend life to 4-5 years.

I’ve had two CRS/HIPECs. Both times I had recurrence within 6 months.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

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mslaurie
Posts: 18
Joined: Sun May 19, 2019 7:04 pm

Re: Would like to hear from those who have had Surgery & HIPEC..

Postby mslaurie » Sun Aug 04, 2019 8:05 pm

Thank you, not necessarily the HIPEC part. I know the HIPEC chemo may or may not have much difference one way or the other in doing it or not.. but the surgery part can be the main benefit and depends on how good the surgeon is and/or how much spread one has as far as what I have read.

The surgeon my husband said he has done over 500 of these surgeries with HIPEC so I guess to him maybe he feels the HIPEC must have some benefit.

So you had the surgery 2 times along with the HIPEC and both times recurrence in 6 months? That's not very promising. :(
I am Caregiver to my Husband
Oct 2009 stage IIb
Sept 2009 - Ifoot colon removed
NED since 2009 until April 2019
Clear Scan Dec 2018 = NED -Clear colonoscopy March 2019
Routine annual chest xray April 2019 (lungs fine liver show as abnormal)
May 2019 Ultrasound, CT scans confirm recurrence Peri and liver mets with ascites. Stage 4C
May, June, July 2019 OXI and Xeloda (1st cycle, 2nd and 3rd cycle)
July met with surgeon (Candidate for cytoreduction surgery and HIPEC) - 4 months till surgery.

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Would like to hear from those who have had Surgery & HIPEC..

Postby Rock_Robster » Sun Aug 04, 2019 8:41 pm

Hi Mslaurie,

Do you know your husband’s Peritoneal Cancer Index (PCI) score? I understand this can be quite useful in attempting to predicting the likely benefit of CRS/HIPEC.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
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 x 6
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 liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

User avatar
mslaurie
Posts: 18
Joined: Sun May 19, 2019 7:04 pm

Re: Would like to hear from those who have had Surgery & HIPEC..

Postby mslaurie » Sun Aug 04, 2019 10:17 pm

No and realistically they cannot tell the PCI index until they look inside. CT, PET, Xrays or Ultrasounds do not show accurate peri mets involvement.
I am Caregiver to my Husband
Oct 2009 stage IIb
Sept 2009 - Ifoot colon removed
NED since 2009 until April 2019
Clear Scan Dec 2018 = NED -Clear colonoscopy March 2019
Routine annual chest xray April 2019 (lungs fine liver show as abnormal)
May 2019 Ultrasound, CT scans confirm recurrence Peri and liver mets with ascites. Stage 4C
May, June, July 2019 OXI and Xeloda (1st cycle, 2nd and 3rd cycle)
July met with surgeon (Candidate for cytoreduction surgery and HIPEC) - 4 months till surgery.

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Would like to hear from those who have had Surgery & HIPEC..

Postby Rock_Robster » Sun Aug 04, 2019 10:48 pm

mslaurie wrote:No and realistically they cannot tell the PCI index until they look inside. CT, PET, Xrays or Ultrasounds do not show accurate peri mets involvement.

Understood, thanks mslaurie
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
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 x 6
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 liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

Pyro70
Posts: 155
Joined: Mon Jan 21, 2019 4:25 pm

Re: Would like to hear from those who have had Surgery & HIPEC..

Postby Pyro70 » Mon Aug 05, 2019 8:37 pm

mslaurie wrote:Thank you, not necessarily the HIPEC part. I know the HIPEC chemo may or may not have much difference one way or the other in doing it or not.. but the surgery part can be the main benefit and depends on how good the surgeon is and/or how much spread one has as far as what I have read.

The surgeon my husband said he has done over 500 of these surgeries with HIPEC so I guess to him maybe he feels the HIPEC must have some benefit.

So you had the surgery 2 times along with the HIPEC and both times recurrence in 6 months? That's not very promising. :(


My surgeon, whom I respect, has done a similar amount and still does HIPEC. I would like opt for CRS only based on the latest data. I also suffered serious complications in terms of a bowel leak. Twice - once after the first HIPEC. The second HIPEC removes the rest of my large bowel and created a j-pouch due to recurrence. And then a bowel leak on ostomy reversal. So yes. Surgeries carry risks. I’m lucky to have survived and frankly it is now interfering a bit with chemo and medical treatment from an unresolved fistula. I doubt that skipping HIPEC would have made a big difference. When I did my surgeries we didn’t have data that HIPEC helps so I went with “expert opinion”. Now we have data it doesn’t work. So I’d go with that. I’m sure if you ask though your surgeon will say something like “we use different drugs than in the trial”. Fact of the matter is it likely doesn’t help most patients and there are risks. My 2 cents.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

Canada777
Posts: 61
Joined: Mon Mar 28, 2016 6:24 pm

Re: Would like to hear from those who have had Surgery & HIPEC..

Postby Canada777 » Thu Aug 08, 2019 10:02 pm

You can see my signature below. Dh had Hipec Oct 2016. He's young and recovered well from surgery. High pci (20) but we were told they removed it all. No chemo after. Recurrence 9months later. Just one small spot he's been getting chemo for (on and off) and it's stayed stable this whole time. He may qualify to have it removed at some point.
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX & then successful HIPEC in 2016.
Diagnosis changed to appendix cancer.
One small recurrence to pelvis 9 months later.
Resumed chemo and staying stable.

Pyro70
Posts: 155
Joined: Mon Jan 21, 2019 4:25 pm

Re: Would like to hear from those who have had Surgery & HIPEC..

Postby Pyro70 » Tue Aug 13, 2019 9:22 am

Canada777 wrote:You can see my signature below. Dh had Hipec Oct 2016. He's young and recovered well from surgery. High pci (20) but we were told they removed it all. No chemo after. Recurrence 9months later. Just one small spot he's been getting chemo for (on and off) and it's stayed stable this whole time. He may qualify to have it removed at some point.


I’m glad DH is doing so well. One thing to consider for others is that the prognosis after HIPEC for appendiceal cancer is vastly different than for colon cancer. HIPEC is more or less proven to work for apppendiceal cancer and the 10 yr survivals after HIPEC are very high. Few CRC patients survive 10 years post HIPEC.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

User avatar
mslaurie
Posts: 18
Joined: Sun May 19, 2019 7:04 pm

Re: Would like to hear from those who have had Surgery & HIPEC..

Postby mslaurie » Tue Aug 13, 2019 10:04 am

Yes Appendix cancer has a 75%-90% survival rate for surgery and HIPEC and colon and other types of cancer it is more around 25%-35% for 5 year. Many will have multiple Surgeries with or without HIPEC with colon cancer during their treatment.. its almost a chronic illness until no more surgeries or chemo can be done.
I am Caregiver to my Husband
Oct 2009 stage IIb
Sept 2009 - Ifoot colon removed
NED since 2009 until April 2019
Clear Scan Dec 2018 = NED -Clear colonoscopy March 2019
Routine annual chest xray April 2019 (lungs fine liver show as abnormal)
May 2019 Ultrasound, CT scans confirm recurrence Peri and liver mets with ascites. Stage 4C
May, June, July 2019 OXI and Xeloda (1st cycle, 2nd and 3rd cycle)
July met with surgeon (Candidate for cytoreduction surgery and HIPEC) - 4 months till surgery.

4us4
Posts: 1
Joined: Tue Aug 13, 2019 2:58 pm

Re: Would like to hear from those who have had Surgery & HIPEC..

Postby 4us4 » Tue Aug 13, 2019 3:27 pm

mslaurie wrote:No and realistically they cannot tell the PCI index until they look inside. CT, PET, Xrays or Ultrasounds do not show accurate peri mets involvement.


I am on the road to Cytoreductive and HiPEC... possibly October? I am think were are moving forward at University of California San Diego. My surgeon said he would do an "exploratory laparoscopic" before hand. We also meet with surgeons in Oregon, who did not offer this prehand surgery. I'm not sure if there is a benefit or not. Just sharing my plan. Looking forward to seeing your updates.
Diagnosis: Stage 4 Colorectal Cancer with Peritonial Mets

bitchslapped
Posts: 1525
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Would like to hear from those who have had Surgery & HIPEC..

Postby bitchslapped » Fri Aug 16, 2019 12:02 pm

I created the following thread Dec. of 2017 detailing my BFF's CRS/HIPEC experience b/c we didn't have it on here really ...in detail that is. There are links within the thread to more info:
viewtopic.php?f=1&t=59200


My BFF was told by someone @ UCSD that Oregon (OHSU) HIPEC team was trained there. So surprises me that OHSU does not perform presurgical laparoscopic assessment of PCI Index. Candidates w/PCI of over 20 (if my memory serves me correctly) are not candidates for the surgery. I'd want to know that UPFRONT. Additionally, OHSU has only been performing HIPEC for about 5-6 years. If I had a choice (insurance permitting), I'd choose elsewhere.

If you use the search box above you will also find others on here who have had HIPEC, however some years ago.

Hope this is helpful.

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


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