Looking into HIPEC

[Shana]

Hi Robin,

Following this post and hoping this is a procedure that will beneit you long term. It sure sounds like a possible road to Nedville. Good luck with your research and you know I'm wishing you all the best as you search for the right path forward!

Hugs,

Shana

[bitchslapped]

Robin, Here's a link to a thread where Jaques provides outside links + a link where our O Stoma Mia has posted links to various HIPEC threads:
viewtopic.php?f=1&t=57534&p=467228&hilit=hipec#p467228

You can also do a search w/HIPEC in the search box. As far as losing the tabs on your computer, those tabs may still be in your "search history" for that day or that week or month if you click on "history" tab on your computer of sites visited.

Dr. Sugerbaker is in Washington D.C., not Washington State. I did a lot of research on behalf of my BFF & found hospitals that list their stats on HIPEC do so very sparingly. MSKCC has only been doing HIPEC about the last 15 years, surprisingly & Johns Hopkins was not recommended through contacts my BFF had.

Though my BFF could have had HIPEC locallyin OR, & a very experienced surgeon in WA State, the search was for a highly experienced surgeon, specialized in appendix cancer + a hospital that was highly experienced & set up for aftercare & PUBLISHED their stats. Not easy to find either one. I was able to find TWO hospitals that published their stats: Dr. Andrew Lowy/UCSD (San Diego) & Dr. David Bartlett/UPMC (Pittsburg). I also searched reviews such as Vitals.com + PubMed for various doctor's publications + YouTube videos of HIPEC conferences & other cancer forums. Dr. H. Richard Alexander Rutgers Cancer Institute/New Brunswick, NJ stood out to me as well.

It's really a tough decision b/c you want a great surgeon & hospital set up to handle any post-surgical complications & there was complications (AFIB) for my BFF as outlined in my thread about her experience. During initial consult BFF took a tour of hospital ward dedicated to cancer patients, in particular HIPEC patients had access to all of the latest & greatest equipment to handle any complication incl heart on the floor. So it's not that it was rated a top hospital, but their HIPEC patients got top care. Also look for good phone communication through staff & doc's NP. Was NOT good locally to even get an initial appointment for consult + locally they had only been doing HIPEC 4 yrs, however they were trained by Dr. Lowy & staff we found out after her surgery.

This post is from a member who discusses Emory/Atlanta stats:
viewtopic.php?f=1&t=59140&p=467764&hilit=hipec#p467764

Staying w/your kids 2 hrs away may not be an option if the doc wants you staying near the hospital for a few wks post surgery as in my friend's case. It would make it easier for your kids to come to you however. You should be able to find someone well qualified on your side of the country. A short flight home sounds awfully good post HIPEC I must admit. BFF was 3 wks in San Diego before flying home so wasn't bad @ all according to her.


Best Wishes on your search. Keep us updated.
BS

[Robino1]

Thank you so very much for this invaluable information! It is so hard to find info, as you stated. You are an amazing researcher . Your BFF is super blessed to have you in her life. I am too!!!

[peanut_8]

Thank you so very much for this invaluable information! It is so hard to find info, as you stated. You are an amazing researcher . Your BFF is super blessed to have you in her life. I am too!!!

Seconding this!!!

[Shana]

Thank you so very much for this invaluable information! It is so hard to find info, as you stated. You are an amazing researcher . Your BFF is super blessed to have you in her life. I am too!!!

Seconding this!!!

I'm thirding this! What awesome information and awesome people on this forum!

[Aynne]

I tried to look up Skifletcher as that name was mentioned as to going through it and being successful. I can't find him in the search function. Would love to know who did his.

I'm trying to find the best surgeon to do HIPEC so I can consult to see if I am a candidate. Google search is not helping me much. I must be doing something wrong. I had tabs open to save them then my computer decided to update. On one of the updates, it lost all my tabs. I know, I should have saved them in favorites. Live (God I'm trying) and learn.

I'm in the USA so out of country is not an option. I am willing to travel within the US. I've come to the conclusion that oncologists don't necessarily like to transfer their patients to surgeons. Yeah, I'm a bit jaded right now.

I feel as if I'm at a crossroad and have no clue how to read the map.

Cleveland Clinic? I could stay with my kids in the Detroit area, they are about 2 hours from Cleveland.

So very lost in this maze...

I had hipec done in December in Maine, Dr. Timothy Fitzgerald at Maine medical center. He also reversed my ileostomy. I highly recommend him. You can tell him I referred you.

[bitchslapped]

Thanks for the Kudos girls. Told BFF that I would walk this walk w/her all the way. Happy to say enjoyed lunch w/her several weeks ago & few days ago & maybe again next week! She & DH both very grateful.

So Robin, according to your signature looks like you are doing very well on FOLFOX. Has your onc recommended HIPEC as a possible option for you or are you just entertaining the possibility for yourself down the road? It's good to research your options early, most definitely. Adjuvant chemo for colon cancer post HIPEC seems to be recommended due to higher possibility of recurrence than appendix cancer. For my BFF, HIPEC was the only option after removal of appendix. No chemo, no clinical trials available...just surgery.

I did spend a lot of time on PUBMED for research on HIPEC + Google Scholar. PUBMED in addition to HIPEC search, allows search by doc's names can be performed to see how many research papers they authored, coauthored in addition to checking their bios on their own or hospital affiliated websites which sometimes lists # of publications & titles. I was looking for highly specialized researchers vs somebody who "does" HIPEC. Again, I was looking on behalf of someone else who had rare appendix cancer. From the papers I read, a surgeon who has performed 200-250 HIPEC procedures w/b considered proficient.


Best Wishes All
BS

[Robino1]

My oncologist rolled her eyes when I mentioned HIPEC at the beginning of my journey. It was a fleeting eye roll but as I'm a people watcher, I did catch it.

I'm researching in case FOLFOX fails. From what I'm reading, I have a better chance of being a candidate if I have less seeding so better to go in before it starts multiplying, if it decides to do so.

I'll know more after the next scan. My CEA is starting to go in the wrong direction. Won't know exactly what's going on until the scan. Hopefully an anomaly is causing the rise and not more cancer.

Gathering names is an important step in keeping ahead of this. I'll have a plan in place should I need it.

[MattAZ]

If you are still looking, I had HIPEC 6 years ago in Pittsburgh from Dr Matthew Holtzman at UMPC. Great doctor. My initial surgeon in Arizona thought HIPEC was a waste of time even though I was having re-occurrences every 6-9 months over a few year period. I have not had a peritoneal met since the HIPEC procedure in 2012.

[GrouseMan]

If you are still looking, I had HIPEC 6 years ago in Pittsburgh from Dr Matthew Holtzman at UMPC. Great doctor. My initial surgeon in Arizona thought HIPEC was a waste of time even though I was having re-occurrences every 6-9 months over a few year period. I have not had a peritoneal met since the HIPEC procedure in 2012.

I second these folks - Ive heard tyhat they are the best in the country at doing this technique. I asked my wifes oncologist that didn't think she was a candidate becuase she had Liver and Spleen mets, that if she were ever to become a candidate where she should go, and he said there. He wasn't a big advocate for this procedure becuase he didn't see a benifit for most people, as it usually adversly effected QOL, and often failed. But at least he had done his homework.

Even though my wife passed away last June, I still spend some time looking into treatments for Peri mets, and what is being done. Recently I found a monograph from 2012 discussing many aspects of the HIPEC procedure while searching around for information. I have the PDF file I downloaded but not the original link. If anyone is specifically interested I'll pass the PDF file on to you. Its technical but might help you in your discussions with your oncology team.

Regards,

GrouseMan

[Robino1]

If you are still looking, I had HIPEC 6 years ago in Pittsburgh from Dr Matthew Holtzman at UMPC. Great doctor. My initial surgeon in Arizona thought HIPEC was a waste of time even though I was having re-occurrences every 6-9 months over a few year period. I have not had a peritoneal met since the HIPEC procedure in 2012.

I second these folks - Ive heard tyhat they are the best in the country at doing this technique. I asked my wifes oncologist that didn't think she was a candidate becuase she had Liver and Spleen mets, that if she were ever to become a candidate where she should go, and he said there. He wasn't a big advocate for this procedure becuase he didn't see a benifit for most people, as it usually adversly effected QOL, and often failed. But at least he had done his homework.

Even though my wife passed away last June, I still spend some time looking into treatments for Peri mets, and what is being done. Recently I found a monograph from 2012 discussing many aspects of the HIPEC procedure while searching around for information. I have the PDF file I downloaded but not the original link. If anyone is specifically interested I'll pass the PDF file on to you. Its technical but might help you in your discussions with your oncology team.

Regards,

GrouseMan

I truly appreciate it. I would love to have that file. I will PM you my email address.

Thank you!

When we are faced with the possibility of dying or quality of life, I am pretty sure I will chose a lower quality of life over death.

[O Stoma Mia]

.. Recently I found a monograph from 2012 discussing many aspects of the HIPEC procedure while searching around for information. I have the PDF file I downloaded but not the original link...

Is this the original link you were referring to? (This one is only 9 pages long, so it's not really a monograph.)

Cytoreductive Surgery Plus Hyperthermic Perioperative Chemotherapy for Selected Patients with Peritoneal Metastases from Colorectal Cancer: A New Standard of Care or an Experimental Approach?
Paul H. Sugarbaker
Gastroenterology Research and Practice
Volume 2012 (2012), Article ID 309417, 9 pages

https://www.hindawi.com/journals/grp/2012/309417/

[GrouseMan]

.. Recently I found a monograph from 2012 discussing many aspects of the HIPEC procedure while searching around for information. I have the PDF file I downloaded but not the original link...

Is this the original link you were referring to? (This one is only 9 pages long, so it's not really a monograph.)

Cytoreductive Surgery Plus Hyperthermic Perioperative Chemotherapy for Selected Patients with Peritoneal Metastases from Colorectal Cancer: A New Standard of Care or an Experimental Approach?
Paul H. Sugarbaker
Gastroenterology Research and Practice
Volume 2012 (2012), Article ID 309417, 9 pages

https://www.hindawi.com/journals/grp/2012/309417/

Nope - Mine is 131 pages long and contains that paper you cite as one of many discussing the Peritoneal Metastases. Its title is Peritoneal Metastases - Guest Editors Yataka Yonemura, Yan Li, Paul H. Sugarbaker and Pomoiliu Piso. Publish by the Gastroenterology Research and Practice I think as a special issue perhaps bring many papers together.

Regards,

GrouseMan

[Robino1]

I have a lot of reading to do.

I'm hoping they have perfected things since 2012. The survival rates are dismal. Fewer survive than get 'cured'.

Much thinking needs to happen on my end....

Butt then again, survival rates on peritoneal spread is damn dismal also.

Right now I just feel screwed.

[ppanamared]

Yeah im feeling the same way as you..they want to throw low odds trials at me but when you bring up hipec which might also be low odds but at least a reset for more time..ohh you will have abdominal scarring and other excuses. Oh yes save those muscles, ill need those alot when im dead in 6 months. The more people I ask, the more different opinions i get, so just keep getting more opinions i guess lol.