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After hipec

isabella06
Posts: 4
Joined: Apr 2010

Hello out there ...

I was wondering if anyone would like to share their experience if they have had surgery/hipec procedure . I have stage IV colon cancer that recently mets to my ovaries. In Feb I had the hipec procedure and am coming to the end of my recovery. It was an ordeal , to be sure , and probably not for the weak of heart , but I wanted to buy myself some time . I have been on chemo every week for 3 years and at that point it mets to my left ovary. My local oncologist referred me to another city in our state where I was accepted as a good candidate for the hipec, nicknamed shake and bake. I know nothing is etched in stone with us but the surgical oncologist said post-op I would be able to lead a semi-normal life and take a break from chemo . This was very appealing to me . As you all can imagine , it has been a rough 3 years .The surgeon went on to say that chemo wouldn't really work anymore because it cannot penetrate the peritoneal cavity.He preferred to monitor me from now on by Pet scan at 6mos., 9 mos. etc. I was downright shocked when I returned to my local oncologist and he wanted me to start a possible 1 year regimine of chemo. Now I know I could get a third opinion but I am told not every hospital or surgeon does hipec and I would most likely have to go out of state for one , which may not be possible at this time. Has anyone else had this done and did you continue on with chemo post -op ?? I was told that it is still considered colon cancer and it was not ovarian cancer . They just removed my ovaries and nothing else . My uterous seemed fine but there were cancerous cells floating in the peritoneal cavity , which of course , is what the shake and bake is all about . That is my saga . I would appreciate any info , comments , really anything ...I am new to discussion boards so bear with me !!

C Dixon
Posts: 202
Joined: Jan 2010

Hi,

I had a HIPEC in September of '09. I had disease on my diaphragm and small spots on my liver that were ablated during the surgery. I went to Duke for mine and I also see an Oncologist there to consult with my local doc. They both agreed that 6 months of post-operative chemo (folfiri) was the thing to do.

I do know that chemo has a harder time reaching the peritoneal cavity but I don't know that it doesn't get there at all.

My surgeons from Duke told me that any type of post operative chemo options would be up to my Oncologists but they work closely together at Duke. Everytime I go I see the surgeon and the Oncologist.

Hope this helps,

Catherine

krf's picture
krf
Posts: 99
Joined: Dec 2009

Hi-
Welcome to the board Isabella! I am sorry I cannot give you any info. I am actually turning right around and asking you a question. My husband hasn't had HIPEC yet, but it is part of his surgery scheduled for next Wed. If you or any other HIPEC/ big long surgery incision folks ;) have any input, I would appreciate it.
As many of you know my husband, Crow71, is having surgery on 4/14. Cytoreductive- removing lesions in the peritoneum, HIPEC, remove approx. 6 inches colon, liver RFA or resection depending on how it looks, colostomy takedown, and possibly a temporary ileostomy to let all that heal up.
I am not sure if the incision is the same for anyone going through HIPEC? I know for my husband there will be an incision from breastbone to pelvis. My question is, what should I do in preparing for the hospital homecoming? Our bedroom, where he is most comfortable, is up a flight of stairs. I know he needs to get up and walk around everyday, but will stairs be too much for a while? How long? I can set up a bed in a room on the main floor of our house if necessary. But that room doesn't have the huge flat screen my dad got him when he started chemo! ;)
I'd like to have things set up before surgery as much as possible.
Thanks for any input.

Kim

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Before he leaves the hospital physical therapy will ask about his home situation and stairs. He won't be able to handle a flight of stairs for a bit. I couldn't even handle my high bed for a bit and slept on the couch! I would say definitely set up a bed on the first floor; better to have the option and not need it than to need it and not have it! I know you are both probably getting anxious and just want to get on with it! He's in good hands with Dr. Chen and will be home and recovering before you know it!
mary

isabella06
Posts: 4
Joined: Apr 2010

Hi Kim,

As for me ....I was very much weakened by 3 years of weekly chemo and a laprascopy to remove the left ovary just weeks prior to the hipec procedure and I have Neuropathy from one of my previous chemos... stair climbing was out of the question. I live in a split leval house and managed to traverse the 3 steps at a time with help. I was actually on a walker for the first couple weeks . I don't know how strong your Husband is going into this , so he could fare better . I have the big incision you spoke of and , for me ,I didn't feel like I was recovering until about a months time. For a full recovery my surgeon told me 8-10 weeks and I agree. Your Husband is fortunate to have such a caring wife.
Best of luck and hope this helps.

Isabella

C Dixon
Posts: 202
Joined: Jan 2010

Hi Kim,

I did not have a rough recovery except for the first two days after the surgery. But I had a 3 1/2 month break from chemo and exercised regularly during that time and even more so when it became apparent I was going to have this procedure. I was walking the next day but that hurt like I don't know what. But I had the pain pump.

I could have walked the stairs when I got home seven days later, although I wouldn't have wanted to do it all day long. The part of the recovery that seemed the hardest to me was the first two to three weeks at home. I was walking slower than normal, of course, and there is still considerable pain. I had Oxycodone which makes me depressed so they switched me to Vicodin which was much better.

I'm not saying it was a bed of roses. I took thost pain pill like clockwork and worked to to get off of them. But I was off of them in four weeks totally. I made myself walk, just to my stop sign and back first. But I was up to a mile in three weeks.

Everyone is different but all the doctors told me working through the pain is good but then you have to know when enough is enough and rest for the rest of the time.

Catherine

thxmiker's picture
thxmiker
Posts: 1224
Joined: Oct 2010

If I was going to have another surgery it would be followed by the HIPEC procedure! Not many doctors agree with HIPEC. I say if it reduces my odds of having floating cancer cells in the peritoneal cavity then I want my best odds! Even if it is 3% different I want that 3% difference! (I interviewed UC San Diego. They have 35% better results using HIPEC then other oncologists. Is it because they are better surgeons, better diagnogstics, etc...)

Having chemo after surgery is because new cancer cells grow faster then other cells. Cancer is considered a new cell and fast growing.

Our thoughts and prayers are with your husband and your family!
Best Always! mike

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

I had a large open incision and also have my masterbedroom on the 2nd floor. They told me not to use the stairs and to make myself comfortable in the downstairs bedroom but, I didn't listen. I used the stairs without much pain ... but, I will tell you that I am suffering from a hernia ... though I don't think it was from climbing stairs. If he has to do that make sure that he wears the support belt (they should send him home with one) and/or holds his incision site while doing things that might strain the incision area.

Biggest relief for me? I had a friend come and take my bedframe off and just place my boxspring and mattress on the floor as my bed was too high to roll out of and into comfortablly. Also with the weight lifting limitations, I couldn't pick up my dog to put her on the bed which was too high for her to jump up on. So, just might want to think about that one.

Good luck to you both! I will send out some good vibes and prayers for an uneventful surgery and speedy recovery.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I had the cytoreductive with IPHC (same as HIPEC) in May; you ain't kidding that it isn't for the faint of heart! I had much infection and was in and out of the hospital until August. I know I wouldn't be a candidate to have it done again because of all the damage caused by the infections; adhesions and a ventral hernia. I doubt I would WANT it done again! I have not had follow up chemo, but I have had ablation done on a lesion in my liver and my left adrenal gland; a walk in the park! My recurrences have been just that, recurrent colon cancer. I had a recurrence on my right ovary back in 2006 and chose to have a full hysterectomy, including cervix; didn't want to be back later with cervical cancer ;). Good luck with your fact finding! Fight, fight, fight!
mary

krf's picture
krf
Posts: 99
Joined: Dec 2009

Thanks ladies, that really helps. I am setting up the bed!

Good luck and good health to you all!

Kim

MaxRudy
Posts: 56
Joined: Dec 2010

Thank you all for your posts. I was just diagnosed with peritoneal carcinomatosis. I have a large (very large) mass in the abdomen (omental cake)and small amounts of ascites. This was the results of a CT scan for abdomenal pain. Like all of you, I am sure, I have spent the last week (since diagnosis) reading and researching. I have seen 2 oncologists and am scheduled to see 2 more next week. Due to the pain and mass, I need to do something fairly quickly but I wanted to see a HIPEC surgeon/center prior to any decisions and I have an appt scheduled for next week (Dr. Hanna at Greenbaum Cancer Ctr in Baltimore). The primary source seems to be the peritonium.

My succinct encapsulation of all this is I have a very aggressive cancer and very serious condition. The local oncologists that I've seen want me to jump into the debulking and chemo. From my research, my best chance at a longer life would be the HIPEC. Do they ever do this as a first procedure....it seems from what I've read, people have initially gone thru debulking and chemo then later resort to the HIPEC. Seems you'd be at your physical best to withstand the HIPEC if you went that route right away. Any thoughts from anyone? I'm on step 1 of this horrendous battle so if some of you have any "lessons learned" to share, I would so appreciate it. Thank you.

LivinginNH's picture
LivinginNH
Posts: 1302
Joined: Apr 2010

My Rick had HIPEC in November. Please send us a PM if you would like some information about the operation and how to prepare for it both pre-op and post-op.

Best wishes, Cynthia

MaxRudy
Posts: 56
Joined: Dec 2010

Cynthia,

Thank you for the quick response. I would like some info. I'm an engineer by background so the hardest things for me to deal with are the "unknowns." Yes, there are a lot of unknowns here but I think you know what I mean....I like information. I sincerely hope Rick is doing well....I've read on some of these blogs that it is a tough procedure. I've watched so many friends and family forage thru the cancer trail and always marvelled at their strength. I'm not sure what "PM" means....my personal email address?

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

Hey Max,
I'm really sorry about your diagnosis. It sounds like you are dealing with your dx very well. For lots of us the impulse is to plow ahead asap; so I commend you for seeing so many different oncs and researching.

HIPEC is not a rare as it used to be, but you definitely want to go to a major cancer center with experienced surgeons who have done hundreds of this type of procedure. I've heard good things about Dr. Hanna and the rest of the team at Maryland. I had my HIPEC done by Dr. Shen at Wake Forest. I highly recommend Dr. Shen. Duke is also good. I went to Sloan Kettering for another opinion and they recommended Pitt. You've got some options, but if you are close to Maryland, that's probably your best option. You'll have to see what kind of feeling you get from Hanna.

I'm not clear about what kind of cancer you have. I don't know much about peritoneal cancer as primary.

I have rectal cancer that spread to my liver, lungs and peritoneal lining. Dx 7/09 I was initially told that surgery would not be an option. I had a great response to chemo and had surgery in April. The med oncs on the tumor board recommended against surgery, but Dr. Shen is pretty aggressive and thought he could do me some good. The surgery was successful in the sense that Shen did everything he sat out to do. Debulking, HIPEC, liver resection/ablation, and rectal resection. Unfortunately the cancer came roaring back - little ******* bastards. I'm hopeful that chemo will do me some good again. I don't regret the surgery. I'm not in great shape right now, but I'm better off than at dx.

I'm not sure how you are using the word 'debulking.' Often words and phrases get used with different meanings. For me debulking is the process of removing the visible cancer and anything else that looks suspicious prior to HIPEC. Dr. Shen calls this cyto-reduction. A surgeon may remove the entire peritoneal lining. Now we're talking serious fun!!

I think your question about doing HIPEC prior to chemo (or radiation) is spot on. I was off chemo for 2 months prior to surgery and felt very strong going into it. Some folks have chemo right up until surgery and that seems to make the recovery really hard. Standard protocol usually calls for chemo before surgery. But I really wonder about that. Sometimes I wonder what would have happened is Dr. Shen had just jumped in there and did his thing prior to any chemo. It's so easy to 2nd guess. I drive myself crazy sometimes.

By the way, that's my wife, krf, and kids in the pictures above.

Good luck with your appointments. Keep us posted. Like Cynthia - who is great - I'm happy to PM. But I also think lots of people may be interested in your conversation with Dr. Hanna.

Take Care,
Roger

MaxRudy
Posts: 56
Joined: Dec 2010

Roger,

Thank you for the info and I will post whatever Dr. Hanna says. I have a pretty hugh tumor so doubt chemo could do much to it without the surgery first (I gather from some of the stuff I've read...I have absolutely no medical background....and altho I'm 62 years old today, I have pretty much been amazingly healthy....no prior problems...exerciser.) I grew up in NC so I do have a history of smoking I'm sad to say...not blaming NC for my poor judgment, just seemed to be the thing to do.

I have a second home in Eastern NC so did consider going to Duke or Wake Forest (heard good things about both). If Dr. Hanna's news isn't good, then I'd have no problem calling Dr. Shen. I looked at a video of the HIPEC procedure by Dr. Hanna (on the Internet) and I liked his demeanor, the way he interacted with the rest of the team etc. There is no doubt, this is a B_____ of a dx but I want to blast into the ring fighting hard and I doubt I will ever be as strong as I am right now. I do have some pain and fatigue but I'm sure it is nothing like I have in store (you don't have to confirm that...I'm trying to keep very positive). As I told Cynthia, I don't know what PM means.

Oh yes, before the oncs really reviewed everything, they assumed the primary source was the ovaries but both oncs that I've seen say they believe the source is the peritonium. My ovaries don't show anything. The oncs "debulking" (if I understood correctly) meant taking out as much of the giant tumor as possible, and taking out part of the colon that shows disease (on outside of colon), and while the uterus and ovaries show nothing, they both said "take out everything I don't absolutely need." Now, neither of these oncs had ever heard of HIPEC so I consider their comments as part of the info gathering....and I'd definitely need a better feeling re: their expertise before proceeding with them or their advice. Soooo, I'm really hoping that I get a great feeling from Dr. Hanna...and I think I will. If not, I'll find someone else...but I'm pretty sure I need to act quickly..the tumor is definitely interfering with bowels and urination.

Again, I'll post Dr. Hanna's comments and thank you and Cynthia so much for getting back to me and so quickly. I sincerely and greatly appreciate it.
Melanie

geotina's picture
geotina
Posts: 2059
Joined: Oct 2009

Go over to the Colon Club. On Wednesday, 12/29, there was a very excellent explanation of the HIPEC and debulking procedure. The response was from a surgical nurse who assists in these procedures and she explains them in detail. One of the best explanations I have ever read.

Take care - Tina

MaxRudy
Posts: 56
Joined: Dec 2010

Thank you. New at this so have to figure out how to maneuver around to get to the "colon club."

Melanie

AnneCan
Posts: 3693
Joined: Oct 2009

I am so sorry you need to be hear but glad you found us. I don't have experience with HIPEC, but I wanted to say hi. With regards to the colon club, you can just google "the colon club" + it will come up. Once you are on the website, click on "colon talk". Good luck!

geotina's picture
geotina
Posts: 2059
Joined: Oct 2009

The Colon Club is a colorectal cancer site. Just search "Colon Club" and it will come up then you can join or just browse the discussion boards. Several on the Colon Club have had the procedures you mentioned. Now, to post, you have to join, but you can browse all you want. Joining costs nothing, just like here. Lots of the medical info on that site is technical, but very understandable and helpful. Good luck.

Tina

LivinginNH's picture
LivinginNH
Posts: 1302
Joined: Apr 2010

To the newbies... ;-)

To send a private message: Simply go to the brownish tab on the left side of the message board and click on "CSN Email", then click on the "write a new message" box; then in the "TO" box, type in LIVINGINNH or whomever else you'd like to chat with, type your message and click "Send Private Message". Don't forge to update your "About Me" page to accept PM's. (See the "Click here" line under the main heading "Cancer Survivors Network" to access the page.

Take care, Cynthia

MaxRudy
Posts: 56
Joined: Dec 2010

To Crow71 and Cynthia and all,

Had my appt with Dr. Hanna today and am scheduled for the HIPEC 20 Jan. Bottom line, I don't have a lot of alternatives. My only alternative really is what surgeon to use and I had read a lot of good things about him and Greenbaum Med Center prior to going to him so am hoping for the best. I'd like to postpone the surgery a while longer as I'm sure right now is the best I will feel probably for the rest of my life and I'd like to extend this "healthy feel" but the tumors are going to start impinging on things pretty soon. I believe Hanna was surprised I wasn't already having more complications. He sure didn't sugar coat anything ... well gang, time to put on my big girl pants! Crow71, I hope you are feeling better today...Cynthia, I hope Rick's scans went well. We'll all get thru this. Love and good energy are coming your way!

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

If you search under HIPEC in the topics you will find a previous thread in which there are also actual videos of the cyto-reduction and HEPIC procedure. I'm sorry but, I'm too tired and it's late here or I would paste the link.

Good luck to all preparing for the procedure!

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