Help PLEASE - Info on HIPEC needed

LivinginNH
LivinginNH Member Posts: 1,456 Member
edited March 2014 in Colorectal Cancer #1
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
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Comments

  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #2
    Cynthia
    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
    Crow71 Member Posts: 679 Member
    #3
    Hey Cynthia,
    Sorry to hear
    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
    C Dixon Member Posts: 201
    #4
    I had HIPEC too.
    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
    geotina Member Posts: 2,111 Member
    #5
    Cynthia:
    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
    LivinginNH Member Posts: 1,456 Member
    #6
    geotina said:

    Cynthia:
    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

    Thank you all...

    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
    Lori-S Member Posts: 1,277 Member
    #7
    Cynthia
    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
    maglets Member Posts: 2,576 Member
    #8
    Lori-S said:

    Cynthia
    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!

    sorry
    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
  • abrub
    abrub Member Posts: 2,174 Member
    #9
    Dr. Bartlett at UPMC
    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
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #10
    Lori-S said:

    Cynthia
    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!

    on the website
    there is a page where you can plug in your geographic info and they will list doctors that do the procedure
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #11
    abrub said:

    Dr. Bartlett at UPMC
    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

    Thank you, we're going to

    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
    Lori-S Member Posts: 1,277 Member
    #12
    LivinginNH said:

    Thank you, we're going to

    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

    Here is a Video of the actual procedure
    http://www.orlive.com/umm/videos/hipec
  • mimic
    mimic Member Posts: 4
    #13
    My husband had HIPEC at UPMC
    My husband had HIPEC at UPMC with Dr. Bartlett. If he should need it again, we would go back there. Positive experience.

    Mimi
  • sfmarie
    sfmarie Member Posts: 602
    #14
    LivinginNH said:

    Thank you, we're going to

    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

    Cynthia
    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.
  • snommintj
    snommintj Member Posts: 601
    #15
    mimic said:

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

    Mimi

    HIPEC
    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.
  • traci43
    traci43 Member Posts: 773 Member
    #16
    had HIPEC
    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
    LivinginNH Member Posts: 1,456 Member
    #17
    snommintj said:

    HIPEC
    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.

    Again, thank you so muchc
    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
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #18
    traci43 said:

    had HIPEC
    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.

    Update

    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
    Lori-S Member Posts: 1,277 Member
    #19
    LivinginNH said:

    Update

    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

    Cynthia
    I know that frustration! Get them all on the same page? Sometimes I think they aren't even reading the same book!
  • traci43
    traci43 Member Posts: 773 Member
    #20
    LivinginNH said:

    Update

    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

    drs--grrrr!
    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
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #21
    I looked into the HIPEC
    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

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