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HIPEC-who has had and willing to talk about it

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HIPEC-who has had and willing to talk about it

Postby craig » Thu Oct 02, 2008 3:19 pm

Just got back from my last onc visit. My CA 19.9 is still rising, but my PET scan was all clear. The onc recommended more chemo - Xeloda + Avastin and recommended that I seek HIPEC, they're afraid it's brewing. I did go to Wake Forest, went through the pre-screening, and they indicated that I'm a good candidate. However, they did scans and told me that I had three mets on my lung and an enlarged liver. This was all new to me. All previous scans have come back clear, the mets in the periteum have never shown on an CT, PET or MRI. So I was devasted, I had them send their CD's to my onc and at the clinic they scowered over them and looked at all my previous scans and ever repeated the CT, still nothing. The only thing that we can figure out is that Wake Forest they had the scans of the wrong patient. So a person kind of loses confidence in a facility if they can't get the correct scans with the correct patient.

I don't know, we live in SW Mo and I've read on the forum that MD Anderson is now specializing in HIPEC. But, I want to know some hard facts, what recovery like, what's the prognosis? I'm having trouble wrapping my mind around another surgery, yet I feel as though my cancer is like a volcano that could irrupt at any moment.

What do you guys think?
Diagnosed Stage III Jan 07
Transverse colon resection
6 month FOLFOX
Diagnosed Stage IV Jan 08 - implants in peritoneum
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Re: HIPEC-who has had and willing to talk about it

Postby weisssoccermom » Thu Oct 02, 2008 4:07 pm

First of all, you are making an assumption that they have the scans of the wrong person. Contact the docs and Wake Forest and ask them to call/fax whatever your local oncs to tell them where they see these spots on the lungs. Have them be very specific. My onc has been VERY honest with me that it is the radiologists and not the oncs who are the best doctors at reading the CT/MRI/PET. Did the radiologists here read them also or just the onc?

I know that Wake Forest has an excellent reputation for utilizing the HIPEC and has been doing so for some time. You talked about another surgery. Did the docs at WF recommend that also? From the little that I know about operating on mets to the peritoneum, the docs at WF are among a few that will do both the surgery and the HIPEC.

As for the HIPEC, I am certain that there are people on this forum who have had experience in it. I can also direct you to the following website to read this young man's story about his journey both with HIPEC and the surgery for abdominal/peritoneal mets.

http://www.caringbridge.org/visit/nickcalendo

Good luck with whatever decision you make.

Jaynee
6/22/06 IIA rectal cancer
6 wks rad/Xeloda
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 mths Xeloda only - blood clots 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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Re: HIPEC-who has had and willing to talk about it

Postby justsing » Thu Oct 02, 2008 10:17 pm

My surgeon, who is part of a surgical group that specialized in HIPEC, told me in one of our earliest consults that scans were somewhat limited in their ability to catch peritoneal activity. I discussed HIPEC with him, and preconsented to it, prior to my colon resection and again prior to my liver resection.

He said that as part of the monitoring process, if my CEA's started to drift up and they couldn't find a smoking gun with scans, that they would do a laparoscopic procedure to take a little camera scope and look around the peritoneum.

The issue with scans is that often peritoneal mets can be small and scattershot and fly below the radar of CT and PET sensitivity. Also they are often surface mets and more disc shaped than orb shaped which makes them easier to miss with scans since they can slip between the slices.

So you might want to ask Wake Forest if that is something they do as part of evaluating your candidacy for the HIPEC protocol.

AND FURTHERMORE:

I want to add that my surgeons are very aggressive, and huge cheerleaders, but in no way have they ever sugarcoated anything for me in terms of prognosis or the reality of a procedure and its potential complications. So if you consult with them you can get some good, hard information. I also had a phone consult shortly after my diagnosis with Dr. Lowy's practice at University of Cincinnatti and I found them to be very helpful and realistic as well. Both of these places may be closer to home for you as well!

Also check out the www.hotchemo.com forum. You might be able to hook up with some folks who have undergone the procedure.
justsing, 46
Stage IV
colon resection 12/07
Liver resection 04/08
Phase I vaccine trial
liver, lung LN mets
tried Oxi, Iri and Avastin
now trying new chemo combos then sir spheres
College prof in theatre & voice
2 girls 18 & 14, one son 10
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Re: HIPEC-who has had and willing to talk about it

Postby craig » Fri Oct 03, 2008 8:46 am

Yes, a radiologist from Wake Forest and the CTCA poured over my scans from the past two years. My scans from the past as well as another repeated only two weeks after the scan from Wake Forest showed no lung mets and my liver was of normal size. I'm just aggravated, I would like to at least everyone to be on the same page before I let them put me on the table.

HIPEC is surgery, they have to debulk any cancer in my pertineum that they can, along with high doses of heated chemo. The chemo cannot penetrate cancers that are bigger than a marble. During my last tumor (colon) removal surgery in Jan 08, they discovered the peritoneal carcinomotosis. They said that it looked like someone threw a handful of sand in my belly. They sewed me up and gave me 6-12 months. That was 9 months ago. I feel much better after going through the six months of FOLFOX+Avastin, but it was hard to take. I've been off of FOLFOX for over a month, and my tumor marker (CA 19.9) is on the rise, which they suspect is the cancer in my peritoneum brewing, which is why the recommended HIPEC. I'm just not sure I'm ready for it yet and I'm not exactly sure I know where to go.

weisssoccermom wrote:First of all, you are making an assumption that they have the scans of the wrong person. Contact the docs and Wake Forest and ask them to call/fax whatever your local oncs to tell them where they see these spots on the lungs. Have them be very specific. My onc has been VERY honest with me that it is the radiologists and not the oncs who are the best doctors at reading the CT/MRI/PET. Did the radiologists here read them also or just the onc?

I know that Wake Forest has an excellent reputation for utilizing the HIPEC and has been doing so for some time. You talked about another surgery. Did the docs at WF recommend that also? From the little that I know about operating on mets to the peritoneum, the docs at WF are among a few that will do both the surgery and the HIPEC.

As for the HIPEC, I am certain that there are people on this forum who have had experience in it. I can also direct you to the following website to read this young man's story about his journey both with HIPEC and the surgery for abdominal/peritoneal mets.

http://www.caringbridge.org/visit/nickcalendo

Good luck with whatever decision you make.

Jaynee
Diagnosed Stage III Jan 07
Transverse colon resection
6 month FOLFOX
Diagnosed Stage IV Jan 08 - implants in peritoneum
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Re: HIPEC-who has had and willing to talk about it

Postby Brandon » Fri Oct 03, 2008 10:01 am

My father had HIPEC last summer at Roswell Park in Buffalo, NY. He had been disagnosed at stage 3B about two years earlier, and then they saw some small spots on the cat scan that they confirmed were peritoneal mets last summer. When they went in for the HIPEC surgery they found a lot more -- all over the place basically. The surgeon said it was as though someone had thrown a bag of rice on the floor and it was his job to try to find and pick up (i.e remove) each and every one. The operation lasted 16 hours, and at the end the doctor said that there was a 30% chance that dad would be cured. Unfortunately that wasn't the case. This summer some small spots showed up on the surface of the liver and when they went back in to do a liver resection they discovered that the peritoneal mets were back and growing again in several places. They decided to restart chemo (5 FU with oxiliplatinum) every 2 weeks because they apparently believe that there is a chance it will help to slow the progression. We are keeing our fingers crossed. So while in Dad's case the HIPEC procedure may not have been a complere sucess, it seems clear that it has bought him some time. The recovery was tough, but he got through it an went back to work about 3 months later. I think he's glad he did it. I hope this helps you in your decision.
Brandon
 

Re: HIPEC-who has had and willing to talk about it

Postby Islandgirl » Fri Oct 03, 2008 6:56 pm

HI!

I had cyberknife surgery followed by HIPEC (Heated Interpertineal Chemotherapy). My surgery lasted 11 hours. I was on a vent for just about 12 hours. My surgeon was Doctor Martin Goodman at Tufts Medical Center in Boston. I spent 13 days in the hospital recovering. I came home on IV TPM ( nutrition), lovanox shots twice a day for clotting. I was home three days and spike a really high fever (105). Ambulance took me back to the hospital where they detected a bowel leak. I spend three and 1/2 more weeks in the hospital recovering from that. Came home on TPM for 2 more months with IV antibiotics. I have spent my summer building myself back up and feel pretty good. I want to say I went into this knowing all the risks. Would I do it again?? YES, YES,YES! Going into this surgery I was in horrible pain and was give 6 months to live. I just made it ot 8 months. Now my pain is back and they are trying to firgure out if it is scar tissue from my three surgeries or more peritineal spread. My liver is clean as are my lungs which made me the ideal candidate. My doctor was very honest and never said he could sure me with this. Is is hard?? Yes its brutal. Sorry but it is. They removed the peritoneal seeding, my spleen, my appendix, my reamaining ovary, cerix, uterous, more of of colon. I came out of it with an ostomy. I may have to have it again and I will if they will take me. One thing that is hard after this surgery....Pet scans will light up inflamation so they will no longer be a scan to detect mets. CT's only. I can't say enough about Tufts. Really geat care. They also have apartments for family to stay in for a very reasonable rate. Please feel free to ask me anything.
46 yr old mom of 3
Dia12/06 stage3
Folfox
r ovary 8/07
periti 1/08
3/08 HIPEC -
11/08 Flofiri +avast
1/09 liver mets
4/10 liver resect
11/10 folfox w avast
4/11 meta lungs/liver
Folfiri w avast
4/13 mets to lungs, liver, paracardial
Erbitux/xloda
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Re: HIPEC-who has had and willing to talk about it

Postby craig » Sun Oct 05, 2008 7:21 am

Thank you for your honesty and willingness to talk about your experience. I did want to ask, how big were your peritneal mets before they did the HIPEC? Also, was your cyberknife surgery on your peritoneal mets or something else?

Islandgirl wrote:HI!

I had cyberknife surgery followed by HIPEC (Heated Interpertineal Chemotherapy). My surgery lasted 11 hours. I was on a vent for just about 12 hours. My surgeon was Doctor Martin Goodman at Tufts Medical Center in Boston. I spent 13 days in the hospital recovering. I came home on IV TPM ( nutrition), lovanox shots twice a day for clotting. I was home three days and spike a really high fever (105). Ambulance took me back to the hospital where they detected a bowel leak. I spend three and 1/2 more weeks in the hospital recovering from that. Came home on TPM for 2 more months with IV antibiotics. I have spent my summer building myself back up and feel pretty good. I want to say I went into this knowing all the risks. Would I do it again?? YES, YES,YES! Going into this surgery I was in horrible pain and was give 6 months to live. I just made it ot 8 months. Now my pain is back and they are trying to firgure out if it is scar tissue from my three surgeries or more peritineal spread. My liver is clean as are my lungs which made me the ideal candidate. My doctor was very honest and never said he could sure me with this. Is is hard?? Yes its brutal. Sorry but it is. They removed the peritoneal seeding, my spleen, my appendix, my reamaining ovary, cerix, uterous, more of of colon. I came out of it with an ostomy. I may have to have it again and I will if they will take me. One thing that is hard after this surgery....Pet scans will light up inflamation so they will no longer be a scan to detect mets. CT's only. I can't say enough about Tufts. Really geat care. They also have apartments for family to stay in for a very reasonable rate. Please feel free to ask me anything.
Diagnosed Stage III Jan 07
Transverse colon resection
6 month FOLFOX
Diagnosed Stage IV Jan 08 - implants in peritoneum
craig
 
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Joined: Tue Mar 18, 2008 4:31 pm

Re: HIPEC-who has had and willing to talk about it

Postby Islandgirl » Sun Oct 05, 2008 8:43 am

Hi!

I had several m and m size tumors and when they went in they removed many small seeds (small tumors scatterd) I also had them in my omentum. They cyberknife surgery was to remove the pertitoneal mets. I should also say that those mets took three scans to pick up and never showed up on a pet at all. They are not easy to pick up on scans. I have them now and they are not showing up at all. God bless and again please feel free to ask me any questions. If you would like to talk I would be happy to call you and tell you more about the experiance and where I am at.
46 yr old mom of 3
Dia12/06 stage3
Folfox
r ovary 8/07
periti 1/08
3/08 HIPEC -
11/08 Flofiri +avast
1/09 liver mets
4/10 liver resect
11/10 folfox w avast
4/11 meta lungs/liver
Folfiri w avast
4/13 mets to lungs, liver, paracardial
Erbitux/xloda
Islandgirl
 
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Re: HIPEC-who has had and willing to talk about it

Postby SaraQ » Sat Sep 05, 2009 8:16 pm

My husband just completed HIPEC surgery yesterday at U of Pittsburgh UPMC. His surgery lasted from 8AM until 5PM, including the chemo treatment.
I was so amazed that when I went to see him in the ICU at 9PM he was sitting up, talking fast and clear, and in no pain whatsoever. Now, a day later they've already moved him out of the ICU and into a regular room. Of course, I think he's receiving excellent pain meds, including a self-controlled morphine drip, which is great.

While we thought we were only dealing with a bladder or possible urachal tumor, during surgery the docs also said it looked like it was in his appendix and small areas of the colon...which is more typical pmp. So those visual odd cells and organs were removed, although he will have only a temporary bag. So we're thrilled with outcome so far. When we read about this surgery in advance it looked so horrid and grueling that you would think of it as a last-ditch effort, however, based on this experience, I would say not to be afraid of this surgery.
I will try to post as he recovers, so that people can get a feeling for recovery issues.
He's in his 50s, good and healthy otherwise, and has gone through 1-1/2 yrs of chemo. Looking forward hopefully to no additional chemo for awhile after this hot chemo treatment.
SaraQ
 

Re: HIPEC-who has had and willing to talk about it

Postby lakeview mom » Tue Sep 08, 2009 11:10 am

I had HIPEC surgery at MD Anderson in late October for mets to the peritoneum. The surgery lasted twelve hours and recovery took three months (I did go back to work after 8 weeks, just was not 100% yet). The surgery has so far proven successful (am currently NED). When first diagnosed with the mets, I was given 3-6 months also. If you are a candidate, I would highly recommend the procedure. It is the only operation that offers the possibility of a cure. At a minimum it should increase your life expectancy through cytoreduction of any peritoneal mets.

My surgeon has since moved on to U Mass (Dr. Laura Lambert). MD Anderson still has doctors who perform this surgery as do a number of Cancer Centers around the country.

Please send me an email if you would like to discuss. I am thrilled to be able to say that I am back to contributing to my 401k and my childeren's college fund.

Diagnosed Stage IV April 2006 Age 42
colon resection, hysterectomy, folfox
mets to peritoneum April 2008
FOLFURI May-Sep 2008
HIPEC October 2008
Currently NED
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Re: HIPEC-who has had and willing to talk about it

Postby cindyz » Tue Sep 08, 2009 12:07 pm

I am confused...you say that HIPEC is the only chance for a cure...I thought that liver resection was? My husband was diagnosed Stage IV this past May (2009) and has numerous tumors in his liver, plus some "retroperitoneum" activity, 2 lymph nodes and a small area in the abdomen that they think is cancer. We were under the impression that our goal was supposed to be getting rid of all other activity outside the liver so that we could maybe eventually be considered for a liver resection. Is this not the case? Our onc didn't tell us this; it's just by reading and talking to other folks that we ascertained this.
At what point can or should you consider HIPEC? Do you have to have mets "just" in the peritoneum, or can you have it all over like my husband does? I am sorry, it's just all very confusing. I suppose I'll be off to search the internet again; such a simultaneously helpful and hateful place.
Wife to Stephen, dx 5/13/09; 45 yo
Stage IV w/numerous mets to liver, 2 to LNs
Colon resection 5/25/09
Folfox/Avastin, Folfiri/Avastin, Folfiri/Erbitux-progressed
Sir Spheres 2/2/2010
Admitted to hospital 4/23/2010
Passed away 5/09/2010
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Re: HIPEC-who has had and willing to talk about it

Postby blakeswife » Tue Sep 08, 2009 4:38 pm

SaraQ & Lakeview Mom,
I am so glad you "bumped" this topic up! This is exactly where we are... DH's latest CT scan showed possible peritoneal mets (4 - only measuring in the mm's) by gall bladder(ish) and suggested a PET to confirm. The PET isn't/wasn't sensitive to pick up the mets by the gall bladder BUT it picked up 2 tumors (cm's) down in lower abdomen (messentary.) I asked the onc what he thought about the "possible" mets by the gall bladder & he said he believes it's peritoneal seeding just not big enough to pick up on the scans yet (needs to be bigger then a pea?). Do you know what criteria has to be met to qualify for HIPEC? Right now, DH isn't interested in the surgery but willing to listen to any ideas. We see onc on Thursday & he may be beginning Folfiri w/Avastin soon. What steps did you take before you moved to HIPEC?

Cindyz, It may be too early to consider HIPEC right now. I would imagine they would want to focus on the liver tumors first. I would think their objective would be to first shrink the liver tumors to make it possible to resect in the future. DH had mets to the liver originally, but they were resected & RFA'd during is initial surgery. So far, no return of the liver mets.

Thanks for any and all info.

I'm truly looking forward to everyone having cancer free days!
DH Stage IV 10/07
Colectomy, Liver resection & RFA, 1/13 LN
12/07-5/08 Folfox/Avastin
7/09 recurrence-Peritoneum
9/09-12/09 Folfiri/Avastin
1/10-5/10 Xeloda/Avastin
9/10-current w/built in breaks
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Re: HIPEC-who has had and willing to talk about it

Postby lakeview mom » Wed Sep 09, 2009 10:50 am

cindyz:

I apologize for confusing you. I am not a HIPEC expert, I can only respond to you regarding my experience. HIPEC was available to me because I had mets only to the peritoneum. I went through six months of chemo prior to the surgeon considering the operation. This was for two reasons. They wanted to make sure that the mets were responsive to the chemo - if not I would have failed as a candidate. Two, they wanted to make sure that I was not developing mets to any other organs. I believe this is because the recovery time on this type of operation is at least 3-6 months. If you have mets to another organ, they would not be able to treat those through chemo or surgery until you have recovered from HIPEC. To date, the only possibility for cure is resection. Chemo only has not proven effective as a cure for this condition. Chemo has proven effective in reducing tumor load and making people eligible for resection. In your instance, the HIPEC would not be an option until you have eliminated mets in liver/lungs.

I wish you the best of luck in searching and finding the answers,

Sincerely

Lakeviewmom
Stage IV April 2006 colon/ ovary
surgery May 2006; folfox Jun-October
Mets to Peritoneum 2008
Folfiri May-September 08
Surgery w HIPEC October 2008
Recurrence to peritoneum Nov 2009, 8 rounds FOLFIRI
Surgery w HIPEC scheduled for June 2010
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Re: HIPEC-who has had and willing to talk about it

Postby Terry » Wed Sep 09, 2009 8:28 pm

cindyz, I think "your only chance for a cure" depends on each of us as individuals and where our cancer is. My chance for a cure right now is the chemo, which right now I'm showing NED on the PET scan I had about a month ago. If my cancer comes back and is more spread then I may have to look into other options. I believe craigs cancer mets is in different areas than your husbands so what it will take to get rid of it is different for you both. Don't give up hope.

Craig I guess what you can take from others experience with the hipec is it's pretty much individual also. It does look like most of the posters tolerated it and recovered pretty well. I feel bad for you that you have to go through this, it doesn't sound like fun at all!

God Bless!
Terry
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!
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