Help PLEASE - Info on HIPEC needed

abrub

thxmiker said:

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

Post surgery IP chemo - Appendix cancer
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

abrub said:

Post surgery IP chemo - Appendix cancer
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.

abrub-what type of cancer did you have?
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

traci43 said:

abrub-what type of cancer did you have?
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

Appendix cancer
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

abrub said:

Appendix cancer
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

Thanks, my mdeical onc is
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

traci43 said:

Thanks, my mdeical onc is
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

I am doing well, thank you.
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

redsoxfan

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

Doctors in New England
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.

thelochdrive5

HIPEC
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

thelochdrive5 said:

HIPEC
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.

Oh, thank you, thank you so

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

LivinginNH said:

Oh, thank you, thank you so

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

As the Crow flies......so will you be in good hands
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

LivinginNH said:

Oh, thank you, thank you so

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

Cynthia
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

LivinginNH said:

Oh, thank you, thank you so

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

great news
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

Is skyfletch still on this site

Is skyfletch still on this site

Trubrit

Pat65 said:

Is skyfletch still on this site

Is skyfletch still on this site

Doesn't look like it

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

Tru