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Help PLEASE - Info on HIPEC needed

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Hello all, Rick got some unwanted news today, his Pet/ct showed that there are two tumors in his peritoneal cavity. The onc is going to put him on Irinotecan and Avastin. I'm having a hard time typing this between tears, but I need your advice. Has anyone tried surgery followed by HIPEC with any success? We are being referred by Mass. General to Dana Farber since they do HIPEC, but should we try to get Dr. Sugerbaker himself if possible? Any clinical trials that you know of that might help. Oh God, please help us.... Cynthia

AnneCan
Posts: 3692
Joined: Oct 2009

I have not had this type of surgery, but I wanted to tell you that I am very sorry + I am thinking of you. There are people on this board (I hope they will chime in) + on the colon club board who have had this surgery.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Cynthia,
Sorry to hear your bad news.

I had cyto reductive surgery followed by IPHC (same thing as HIPEC) last April. I also had my liver resected and primary rectal tumor removed at the same time. It was really really fun.

My surgery is at Wake Forest Baptist Hospital in Winston-Salem NC. Dr. Shen,my surgeon, and Dr. Levine specialize in this surgery and people come to Wake from all over for this. I just happen to live here. I went to Sloan Kettering for a second opinion before surgery. They recommended Wake and Pitt.

I have every confidence that the HIPEC part of the surgery was a success, and I highly recommend Dr. Levine. My problem is that the cancer came roaring back in my liver and lungs as soon as I was off chemo.

Here are 2 links to check out:
http://www.wfubmc.edu/patientsandvisitors/ClinicalServiceSub.aspx?id=5172
http://www.wfubmc.edu/gs/faculty/drshen.htm

Feel free to ask more questions here, or send me a PM.

Relax. Rick's liver resection was successful. You'll beat this as well.

Take Care - Roger

C Dixon
Posts: 202
Joined: Jan 2010

Hi Cynthia,

I had HIPEC too after cytoreductive surgery for disease on my diaphragm and RFA on my liver in September of '09. The cancer came back in my liver BUT I was able to have a liver resection after that. While I was having the liver resection, the surgeon looked all around my peritoneal cavity and said it was totally clean to the eye.

I had mine at Duke but there are something like 20 hospitals doing it now. If you are able, go see two HIPEC docs and go with the one your boyfriend feels most comfortable.

It is hard, but absolutely doable. I was home in 7 days and I would do it again in a heartbeat.

Take Care,

Catherine

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

Besides the folks on here who will be more than willing to share their experience and answer all your questions, there is a guy on the ColonClub (SkyFletch) who just had this done. He is, I think, 29, and getting married in a few weeks. He has done lots of posts on this subject, what he went through, recovery, etc. That guy is an encyclopedia on HIPEC and cancer treatments and testing.

Rick had liver resection and came through that and if HIPEC is in his future, he will get through that also. This road is sure bumpy so take a deep breath and put one foot in front of the other.

Don't know about clinical trials, you have lots of options before going there.

Is this the only place the cancer is showing up now? If so, I sure would look at HIPEC, lots of people have very good results.

Take care - Tina

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Thank you to everyone for your kind responses, it's so much appreciated. And yes, these two tumors are the only ones showing on the PET/CT scan. But his onc. didn't seem too positive, even said that there was nothing else Mass. General could do, so she's sending us to Dana Farber. However, we just searched their website and found NOTHING related to HIPEC - no mention at all! So I have a call in to one of their oncs to find out if they even perform the procedure. I'm keeping Wake Forest and Dr. Levine in mind per Roger's suggestion just in case Dana Farber doesn't work out. We'll travel ANYWHERE for the best doctor. So if anyone else has any hospital/doctor recommendations, please post! Love to all, Cynthia

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I'm so sorry that you guys are going through this as I know it can be scarey to hear this kind of news. Here is link with some interesting info on HIPEC. It really seems to work on those cavity tumors and will most likely be commonly used as the standard treatment one day. The link even has a short video on the first page.

http://www.hipectreatment.com/

Good luck!

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

sorry cynthia ....can't help..have just had liver resections.

Sending you all best wishes....hope you get some great help, suggestions and a good onc...

maggie

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

there is a page where you can plug in your geographic info and they will list doctors that do the procedure

abrub's picture
abrub
Posts: 2108
Joined: Mar 2010

I've heard excellent things about Dr. Bartlett at U. Pittsburgh Medical Center as well. I know my MSK surgeon refers to Dr. Bartlett at UPMC and Dr. Levine as mentioned above.

If/when my cancer returns, I'll probably be going to Bartlett for HIPEC.

Good luck!
Alice

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Thank you, we're going to explore all of your recommendations and hopefully one of these skilled doctors will take us on. Thank you also for your kind words of encouragement and hope - it's exactly what we need right now. You see, HOPE is what will get us through each and every day during this next phase of treatment. All the best to our friends... - Rick and Cynthia

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

http://www.orlive.com/umm/videos/hipec

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

I know Jenhopesandprays is a big advocate of this procedure. She had it done by Sugarbaker, whom I am told is very very selective. I have a friend's mother that had this done and it appeared to work well on her but her cancer also came back. There are many others that have had great success with it and I say go for it. I have been told it is one heck of a surgery, it is no walk in the park. Prayers, do keep us posted.

mimic
Posts: 4
Joined: Mar 2009

My husband had HIPEC at UPMC with Dr. Bartlett. If he should need it again, we would go back there. Positive experience.

Mimi

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

This is the real deal in chemo. It does work and can be curative. It can also kill you. I say go for it sooner than later, since overall health is a key factor in positive outcomes.

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Again, thank you so muchc everyone! Rick started the phone calls to his prior surgeons this morning - he's going to ask them if they can refer him to one of the surgeons mentioned on this board. Please let us know if anyone has any other recommendations as it's always good to have options. Since he's only 43 and in good health otherwise, we're definitely going to go for HIPEC after what we've read here. Love to all, Cynthia

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I had HIPEC last year for my first recurrance of stage IV colon cancer with mets to peritoneum. Sugery was a success because I had minimal involvement, but still my cancer has recently come back. It's a tough surgery and procedure but can be successfull and certainly prolongs life more than chemotherapy alone. It's just not as success in eradicating colon cancer as it is with appendix cancer. I would stronly suggest you go with an experience surgeon as studies show better outcomes with experienced surgeons. I went with a doc that was not as aggressive as Dr. Sugarbaker because I didn't want everything removed. My doc was also within my HMO so I didn't have to fight for outside treatment (well I stopped fighting once I knew there was a Dr in my HMO doing it). If you want I can explain more about my experience.

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Well, here we go... We just got referred to Dr. Goodman at Tufts for the HIPEC procedure - does anyone have any experience with this doctor? Rick's liver surgeon just told us that he doesn't recommend HIPEC since the data doesn't support that HIPEC is any better than standard chemo. However, after reading posts both hear and on the ColonClub, it appears that many people have had good success with HIPEC. Any comments on this?? (My concern is that Dr. Tanabe is one of the top surgical oncologists in the country, so wouldn't he know??) Why is everything so dang confusing and frustrating!! I wish the doctors would all just get on the same page!! Ugh. Love to all, Cynthia

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I know that frustration! Get them all on the same page? Sometimes I think they aren't even reading the same book!

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Cynthia - The thing with HIPEC is that it was developed for appendix cancer and is far more effective and has lots more clinical trials. HIPEC for colon cancer just has retrospective studies since no one was really willing to take the palcebo (nothing or just surgery). Still a 2009 study showed 51% survival at 5 yrs compared to < 20% for just chemo. That may be why your Dr. (or insurance company) it's too excited about it.

I just wanted to let you know that while I've had a recurrance, I do know someone that is disease free after almost 2 years, so it does work for some. Good luck in your quest, I haven't heard about your Dr. so I can't help there. Traci

redsoxfan
Posts: 1
Joined: Oct 2010

Cynthia,

Although I didn't need HIPEC, in my search for info related to my appendiceal cancer diagnosis I spoke with Dr. Martin Goodman at Tufts New England Medical Center and met with Dr. Laura Lambert at UMass Medical Center in Worcester (she previously spent time at MD Anderson).

I am currently being treated at Dana Farber but before I made that decision, I happened to mention to Dr. Goodman that Dana Farber had NO info whatsoever on their website related to appendiceal cancer, HIPEC, etc. His response was that in cases where HIPEC is recommended, that DF refers their patients to him. In talking to my onc at DF, that would appear to be true. So, DF certainly has faith in him. When I spoke to Dr. Goodman, I really liked him. I had emailed him on a Thursday, expecting an email back to schedule an appointment. Instead, on Friday night, he called me and we talked at length about my case. I then emailed him everything I had related to my diagnosis and he emailed me back almost immediately with his opinion. I was very impressed that he would do this for someone who was not a candidate for his surgery & HIPEC.

I also met with Dr. Lambert at UMass Med and I absolutely loved her. She was very positive, very calming, extremely knowledgable, and like Dr. Goodman, was working to help me even though I was not a candidate for surgery & HIPEC. Even after we met, she was emailing me research that she knew of, had consulted with an oncologist on my behalf, and wrote emails just to follow up on my decisions regarding treatment.

There aren't many docs who do HIPEC so you should consider all of them, but be aware that there are docs here in New England that you can consult. I am grateful not to need their services, but if I ever had a recurrence and needed HIPEC, I would consult both of them again in a heartbeat.

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

I looked into the HIPEC also. It is a procedure that has been around for almost 40 years. The latest HIPEC is Heated HIPEC. The results are compelling but not clinical. The logic of it makes sense, flood the abdomen with chemo drugs in hopes of killing any free cells.

I did not have HIPEC because my two surgeries were not planned but done in an emergency situation. (First Appendix blocked, second Colon blockage.) I would consider HIPEC unless the costs were excessive.

My thoughts are with you!
mike

abrub's picture
abrub
Posts: 2108
Joined: Mar 2010

Another chemo done for Appendix cancer that need not be built around major surgery is non-heated Intraperitoneal Chemo, where they place a belly port laparascopically. Chemo is then done at 2 week intervals, with 3 days of infusions each time (day 1, 2 liters, days 2 and 3, one more liter each). The chemo is left to resorb.

That is what I was supposed to have done, as my surgeon assumed that the tumor had been removed by my dr who found the cancer and did the original surgery. However, during the laparascopy, more tumor was found, so the surgeon opened me up, removed all remaining visible tumore, and then placed the belly port. The belly port was later removed in an office procedure, tho if it isn't bothering you, it can be left in place, and requires no maintenance, as it does not drain into the blood system, but just into the peritoneal cavity. This kind of chemo is done at Memorial Sloan Kettering in NY. They don't do HIPEC there, and only recently started referring some of their appendix cancer cases out for HIPEC, as they feel appropriate.

I've done very well with the basic IP chemo. There was a question as to whether I even needed the systemic chemo (Folfox) but they decided to do it to be on the safe side. I'm 3 1/2 years out and doing great.

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Alice-So now I'm curious. Did you have colon or appendix cancer? I've got stage IV colon cancer with mets to peritoneum and had HIPEC 16 months ago and am faced with a recurrance. I've thought but haven't asked my onc about IP chemo for colon cancer. Wondering if that worked for you, what chemo cocktail you had, where you had it done, etc. Going to my onc today, very nervous because I think all they want to do is FOFIRI, no surgery or radiation. Traci

abrub's picture
abrub
Posts: 2108
Joined: Mar 2010

Mine was appendix cancer with peritoneal mets. I had straight IP, not heated IP.

Good luck to you! I hope that all works out for the best.

Alice

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Thanks, my mdeical onc is wondering why no surgery as well. So I see the surgeon on Friday to press him for surgery. Hope you are doing well. I hear that appendix cancer peritoneal mets are easier to kill than colon cancer mets. Traci

abrub's picture
abrub
Posts: 2108
Joined: Mar 2010

Several surgeries later (all visible tumors removed) plus my chemo have had me cancer-free for 3 years and counting.

By the way, the latest recommendations on Stage 4 Colon cancer is that if there is no obstruction, to go with chemo before or instead of surgery. http://www.ncbi.nlm.nih.gov/pubmed/19487380 references recent research on this.

Wishing you good outcomes in your treatments.

Alice

thelochdrive5
Posts: 1
Joined: Oct 2010

Cynthia, I am so sorry to hear of Rick's diagnosis, but I am here to tell you that HIPEC is a life saving procedure. I am convinced of it. My Daddy had the surgery/procedure done in July of 2006. Without the procedure, he was told his prognosis was very, very poor and he only had about 3 months to live. Although the procedure was rough on him (he was 68 at the time with other chronic illnesses), he came through it and was getting clean scans 4 years later. He had a grandchild born during that time and he had good quality of life. We lost Daddy in June of this year, however, he passed away after suffering a sudden cardiac event...but he was cancer free!!! Please, please strongly consider this procedure. Daddy's doctor was Dr. Ed Levine at Wake Forest Baptist Hospital in Winston- Salem, NC. Not only was Dr. Levine the finest doctor/surgeon we could have ever had, but the hospital was top-notch and our experience was excellent. I will pray for you and Rick. Please contact Dr. Levine for help. May God Bless you.

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Oh, thank you, thank you so very much for that post. We did in fact contact three surgeons, Dr. Sugerbaker (he told Rick that he'd be a good candidate but that he's only doing HIPEC for appendix cancer at the moment), Dr. Levine, and Dr. Goodman (Tufts/Boston). However, since we live in NH, we chose to have a consultation with Dr. Goodman. And he too told us that Rick would be a good candidate since Rick is young and healthy aside from this miserable disease. So, Rick opted to have the operation, and he's now scheduled for 8 November. I'm sure that you can all understand when I say that I'm glad that he chose to have the surgery, but I'm terrified for him at the same time. It's just so very hard for me to think of him being in pain again, but I also know that it has to be done. So, we're trying to prepare before things become crazy again (I even bought him a new electric recliner to make him comfortable), and Roger (Crow71) has been of great assistance in sending us information on what to expect after the surgery. I guess it's going to be a long recovery this time around. Our love to everyone, and if you think of it, please send prayers our way north next week. Take care all, Cynthia

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Roger will take care of you in the "what to expect" category....He is always on top of his game and never hesitates to help. He has been through it as well so heed his advice. I think you are on the road to making good decisions for Rick and I think he will come out the other side better for it....Love and Hope to you and yours through all of this......Clift

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

It sounds like you guys are right on top of things and IU am so glad to hear that he was able to get a quick surgical date. I will definitely send prayers your way for both you and Rick. Make sure that you take care of yourself and get plenty of rest when you can. HUGS to you

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

The best words ever--I think you're a good candidate! Good luck to your husband. I hope he comes through with flying colors. Kepp us posted on his progress.The first couple of days were uncomfortable for me but it got better quickly. Traci

Pat65
Posts: 7
Joined: May 2016

Is skyfletch still on this site

Trubrit's picture
Trubrit
Posts: 5004
Joined: Jan 2013

I did a search of members, and the name doesn't appear. 

Tru

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