HIPEC (ers) - Compare Stories

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rwightman
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Joined: Sat Jan 17, 2015 6:50 pm
Location: Southwest

HIPEC (ers) - Compare Stories

Postby rwightman » Sat Aug 22, 2015 6:11 pm

It seems more and more of us are either considering HIPEC or have undergone HIPEC. Was hoping to compare stories of side effects, recovery to see what is normal. Mine was 7 weeks ago and here are a few things I experienced that I don't think were part of the textbook procedure:

1. Wound leaking - my wound didn't open, just started leaking fluid. Was told not to worry unless it looked infected. I came home with 20 pounds of extra water weight and no drains so I guess it had to go somewhere.
2. About a week after that incident, got horrific rib pain that eventually turned into pain with spasms. Went to ER where they did a CT and saw fluid on the left side near my rib, under my lungs and above my diaphragm. No one could tell if it was an abcess or even infected. They gave me IV antibiotics and sent me home with Augmenten. Pain and spasms resolved quickly after antibiotic and today I will get a flutter in the rib, but not pain.
3. My left lung capacity was diminished in the hospital. I couldn't take deep breaths because of the rib pain. I ended up coughing hard for 5 days which then resulted in an extremely sore stomach for the next 10 days.
4. They said I never had pneumonia and I had my onc check my lungs last week. He said they were clear, but still today if I take a deep breath, I get a tickle and will want to cough. Is that every go back to normal?
5. Food Aversion - I can't stand the thought of most food. I really have to try and get enough calories because food tastes really weird to me - kinda like chemo but maybe worse. Like when I eat bread, I feel all I can taste is the yeast. Will this resolve? I am petite and am at my low end weight wise. Might need to start with medical marijuna if this continues because it is really annoying.
6. Day 9 of the Augmenten got horrific diarrhea which has not been a problem throughout this journey. The doc said I could stop, but 4 days later had another attack. I don't think they messed with my bowel during my HIPEC but is it common to have bowel changes during HIPEC?

I go back to my surgeon on Tuesday and want to put together a list for him. I am starting to worry that this procedure is going to result in permanent changes that I was not anticipating.

Any advice? For those of you who have had HIPEC did you make a full recovery. I can deal with the pain - it is the weird other stuff I don't like.
10/9/14 DX Age 50 - MSS
10/23/14 - Colon Resection - Stage II - 0/15 lympth nodes
12/30/14 - Stage IV - 1 liver met 2cc - Liver Resection - No lymph nodes and margins clear
3/10/15 - peri mets
3/15 - Folfox with Avastin - 7 tx
7/15 - HIPEC - 2 peri mets
10/14 - resection of abdominal met
11/12 - 5FU

jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Re: HIPEC (ers) - Compare Stories

Postby jortego128 » Sat Aug 22, 2015 6:42 pm

Wow that HIPEC is a heck of a procedure. I understand it is a long recovery. I see you had it after FOLFOX/Avastin. Did you complete the FOLFOX course prior or did you have to stop due to side effects?

What type of chemo do they deliver in the HIPEC procedure?
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

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rwightman
Posts: 211
Joined: Sat Jan 17, 2015 6:50 pm
Location: Southwest

Re: HIPEC (ers) - Compare Stories

Postby rwightman » Sat Aug 22, 2015 6:45 pm

I did 7 rounds before I had to stop to prepare for the surgery. I will finish the 5 when I am recovered enough, but it will probably just be 5FU.
10/9/14 DX Age 50 - MSS
10/23/14 - Colon Resection - Stage II - 0/15 lympth nodes
12/30/14 - Stage IV - 1 liver met 2cc - Liver Resection - No lymph nodes and margins clear
3/10/15 - peri mets
3/15 - Folfox with Avastin - 7 tx
7/15 - HIPEC - 2 peri mets
10/14 - resection of abdominal met
11/12 - 5FU

Robinf
Posts: 31
Joined: Sun Jan 25, 2015 2:36 am
Location: WA

Re: HIPEC (ers) - Compare Stories

Postby Robinf » Sat Aug 22, 2015 9:27 pm

I had my HIPEC on 5/20, it was a 10 hour surgery but thankfully I was out for all of it. :lol: :lol: The surgeon also said he got everything he could see, but there was more than expected.

I was in the hospital for 5 days (no ICU) and went home sore but ok and managing. About 10 days later, my wound stopped healing and did open up, not all the way but enough that it was pretty icky. I diligently kept my dressing changed and did all I was supposed to but ended up with a high (104) fever and ended up in the hospital for 3 days getting antibiotics. Came home and no fevers since.

On 7/13, I had a ct scan and it showed new spots. :shock: PET scan confirmed and 8 days ago, I started FOLFIRI.

I am glad I did the HIPEC, it's that much more cancer that is out of me and cant grow. I fully expect to do another HIPEC at some point. I'll even follow my surgeon from Seattle to Houston for it. (He left Univ of Washington for MD Anderson a few months after my surgery)

HIPEC isn't a cake walk but it's a shot and one I would and will take again.
Dx stage 4 Sept 2014 (MSS, KRAS Mutant)
Resection with peri mets identified visually during surgery
Nothing visible on CT
12 rounds FOLFOX w/ Avastin Nov - Apr 2015
Still nothing visible on CTs
HIPEC May 2015
7/2015 - 5 new spots on CT, PET confirmed 3 mets
8/12/15-Begin 12 rounds FOLFIRI
10/21/15 Scan - peri mets stable, 1 liver stable and 1 growing
12/4/15 - RFA of liver met
2/24/16 - scan was stable/shrinking moving to Xeloda/Avastin

CM35
Posts: 265
Joined: Tue Dec 03, 2013 1:16 pm

Re: HIPEC (ers) - Compare Stories

Postby CM35 » Sat Aug 22, 2015 11:32 pm

I had HIPEC on 5/14/2015. I had minimal peritoneal disease and had a complete resection of my cancer. I had an aggressive procedure - in addition to the heated intra operative chemo, I received IV 5fu during surgery. Then, the 3 days immediately following surgery, I had intraperitoneal 5fu treatments. The surgeon left the inflow catheter in place following surgery, and the chemo was filled into the peritoneal cavity, and remained for 23 hours each day. The nurses repositioned me every 30 minutes for the first 6 hours to make sure the chemo was reaching all areas of my abdomen/pelvis. Recovery was hard. I barely was able to get out of bed for the first 4-5 days. Between the chemo in my belly, and 9 different tubes/drains/catheters flowing in and out of my body, movement itself was challenging. I was in the hospital for 9 days. I had a lot of fluid in my abdomen, and the drain output was too high for my surgeon to discharge me. I went home with one drain, which was removed at my 2 week follow-up visit. I also had a temporary ileostomy placed, due to cancer nodules on the outside of my rectum. I had a second LAR. The surgery itself was about 9 hours long. I had a lot of adhesions that my surgeon had to dissect, due to cancer growing in some of the scar tissue. I had my ileostomy reversed 9 weeks and 1 day after it was placed. I have no serious bowel problems at this time. For the first week or two after the reversal, it felt like I was crapping nails, but that has since resolved. HIPEC was no picnic, but i am feeling pretty decent now, 3 months after the fact.

A few days after I got out of the hospital, I came down with a UTI, a gift from the Foley catheter I had for 5 days. I ended up with sepsis and spent another 5 days in the hospital.

For me, hipec was not the silver bullet. I had very extensive liver mets at diagnosis. I had a successful liver resection 18 months ago, but just found out I had a liver recurrence last week. I also have a couple suspected abdominal wall mets. I knew this was always a possibility, but it's still devastating when it happens. The chances I will ever be off chemo for any length of time are slim to none. It's time for me to get back on some sort of systemic treatment. I will probably do that until I can't take it anymore. Hopefully, if I can remain stable, I will be in a position to attempt another surgery. How messed up is it that I think of surgery as a way to get a break from the chemo? Fact is, though, I am now too beat up from the surgeries to think of another one at this time. I just had a liver ablation that has hopefully taken care of my most recent recurrence. So, I should have only the 2 abdominal wall spots. My doctor is working on getting another pet scan approved, so we can get a better idea of what the abdominal wall things are. Not that I have any doubt.

All that said, I don't have any regrets about my treatment choices. I would rather try this stuff, and fall on my face, than wonder "What if I'd tried?" If the opportunity ever arises in the future, I will go for surgery again.

Colleen
stg IV 4/2013 @34 - liver, ovary/peritoneum
Lots of chemo, surgery and good luck - still doing well 03/2016...

tigerpaw
Posts: 57
Joined: Sat Jun 20, 2015 1:34 pm
Facebook Username: kristin.lossius
Location: Norway

Re: HIPEC (ers) - Compare Stories

Postby tigerpaw » Mon Aug 24, 2015 8:24 am

I had HIPEC in Norway 26. January this year. PET scan before surgery showed 2 peri mets, the surgeon told me he would probably find more, but actually he did not. I stayed in hospital for 8 days, quite eventless, no problem with wound healing, started eating on day one. I think the reason it all went smooth was no chemo before or after, and relatively small surgery.

The main problem in the weeks following surgery was bloating and stomach cramps, especially after eating. This lasted for 6-8 weeks. I went back to work after 7 weeks.

PET scan three days ago showed no new mets in peritoneum, however I do have one small lung met which may require surgery. I also had one removed in March which appeared before HIPEC. Guess I was lucky to be accepted for HIPEC with one lung met.
63y female
dx July 13 resection of primary in sigmoid colon
Stage 3B cc, T3N1M0
KRAS mutant, codon 12/13, MSS
FLOX (FLV infusion 2 consecutive days + oxi) August 2013. Oxi stopped after 8tx
clear CT 6/14
peri mets + lung met 12/14
1/15 HIPEC
3/15 Lung resection
8/15 Subcutaneous met in midline abdomen-resected
8/15 Two lung nodules, observation, no chemo
2/17 enlarged lymph nodes hilus and mediastinum
5-8/17 FLV + Avastin
3/18 radiation to mediastinal and hilar lymph nodes

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rwightman
Posts: 211
Joined: Sat Jan 17, 2015 6:50 pm
Location: Southwest

Re: HIPEC (ers) - Compare Stories

Postby rwightman » Sun Aug 30, 2015 10:37 am

tigerpaw wrote:
PET scan three days ago showed no new mets in peritoneum, however I do have one small lung met which may require surgery. I also had one removed in March which appeared before HIPEC. Guess I was lucky to be accepted for HIPEC with one lung met.


I saw on a reply to Colleen post that you have a subcutaneous met. Did that show up on this PET scan or did they find it another way? I have never heard of this before and now you and Colleen both have them in your scar tissue...So do they just cut them out?
10/9/14 DX Age 50 - MSS
10/23/14 - Colon Resection - Stage II - 0/15 lympth nodes
12/30/14 - Stage IV - 1 liver met 2cc - Liver Resection - No lymph nodes and margins clear
3/10/15 - peri mets
3/15 - Folfox with Avastin - 7 tx
7/15 - HIPEC - 2 peri mets
10/14 - resection of abdominal met
11/12 - 5FU

tigerpaw
Posts: 57
Joined: Sat Jun 20, 2015 1:34 pm
Facebook Username: kristin.lossius
Location: Norway

Re: HIPEC (ers) - Compare Stories

Postby tigerpaw » Sun Aug 30, 2015 10:55 am

I was hospitalized two weeks ago with an intestinal blockage which resolved itself. A CT scan during my hospital stay showed a subcutaneous met related to my HIPEC scar which was confirmed by PET. And yes, they are going to cut it out.
63y female
dx July 13 resection of primary in sigmoid colon
Stage 3B cc, T3N1M0
KRAS mutant, codon 12/13, MSS
FLOX (FLV infusion 2 consecutive days + oxi) August 2013. Oxi stopped after 8tx
clear CT 6/14
peri mets + lung met 12/14
1/15 HIPEC
3/15 Lung resection
8/15 Subcutaneous met in midline abdomen-resected
8/15 Two lung nodules, observation, no chemo
2/17 enlarged lymph nodes hilus and mediastinum
5-8/17 FLV + Avastin
3/18 radiation to mediastinal and hilar lymph nodes

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H is for Hawk
Posts: 103
Joined: Wed May 20, 2015 4:51 pm
Location: eastern Pennsylvania

Re: HIPEC (ers) - Compare Stories

Postby H is for Hawk » Mon Sep 28, 2015 11:47 am

I had excessive heart pulse rate of about 120 beats per minute for two months post surgery; the doctor indicated it was from inflammation from the extensive tumor debunking before the HIPEC.

Today, three months post surgery, I still have little appetite, and can only eat two small meals per day. In the last month, I have developed chronic constipation. My GI doctor prescribed LInzess, and this has helped somewhat.

My HIPEC experience was very traumatic and unpleasant, 3 1/2 weeks in the hospital, of which 9 days were in intensive care. I probably would not do it again.
H is for Hawk (57)
10/14 L. hemi-colectomy 3 x 4 x 1 cm tumor, 13/14 lymph nodes pos. pT4a N2B M0 stage 3 MSS
11/14 - 4/15 12x FOLFOX
5/15 PET scan: 2.5 x 1.5 cm l. colon lesion, peri surface lesion SUV 2.4, adenocar., KRAS wd, BRAF V600E mut
6/15 HIPEC
9/15 Pleural lining & liver mets, CA 19-9: 6000
10/15 Vectibix Tafinlar Mekinist
11/15 1500
1/16 200
2/16 100, add Lentinan
3/16 122
6/16 4500
7/16 20,000, CT scan - three new liver mets
8/16 6700, FOLFIRI
9/16 4900, CT scan - two new liver mets
10/16 2255 vinorelbine

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rwightman
Posts: 211
Joined: Sat Jan 17, 2015 6:50 pm
Location: Southwest

Re: HIPEC (ers) - Compare Stories

Postby rwightman » Mon Sep 28, 2015 1:09 pm

H is for Hawk wrote:I had excessive heart pulse rate of about 120 beats per minute for two months post surgery; the doctor indicated it was from inflammation from the extensive tumor debunking before the HIPEC.

Today, three months post surgery, I still have little appetite, and can only eat two small meals per day. In the last month, I have developed chronic constipation. My GI doctor prescribed LInzess, and this has helped somewhat.

My HIPEC experience was very traumatic and unpleasant, 3 1/2 weeks in the hospital, of which 9 days were in intensive care. I probably would not do it again.


Hawk, it does sound like your experience was extremely unpleasant and I can see why you would be reluctant to go through it again. I really think this surgery has dramatically different effects for everyone. My appetite is completely back to normal, but I am not gaining back much weight yet. I was able to start exercising again about a month ago and have resumed hiking and some light weights, but I still feel random aches and pains in my abdomen. My surgeon said 6 months for full recovery.

I also have a met that has returned (I can feel it on my csection line). My surgeon looked at the CT report and said he feels certain it was there the whole time in the muscle, but chemo beat it down and it was never picked up on CT. I haven't been on chemo for 4 months so the theory is that it grew back and since HIPEC goes by CT (I had a clear CT before surgery) and surface stuff they couldn't see it or feel it. I am going to have it removed and then start regular chemo. I wonder if this theory is what leads people many people into a second HIPEC - that isn't necessarily a new growth, just stuff that couldn't be picked up during the first surgery.

I am not looking forward to ever having to go through that again, and hoping I don't, but the jury is still out as to whether I would or wouldn't.

Hope you start feel better soon and regain your appetite. Mine came back overnight. I hated that feeling of only being able to eat a bite or two of food.
10/9/14 DX Age 50 - MSS
10/23/14 - Colon Resection - Stage II - 0/15 lympth nodes
12/30/14 - Stage IV - 1 liver met 2cc - Liver Resection - No lymph nodes and margins clear
3/10/15 - peri mets
3/15 - Folfox with Avastin - 7 tx
7/15 - HIPEC - 2 peri mets
10/14 - resection of abdominal met
11/12 - 5FU

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: HIPEC (ers) - Compare Stories

Postby Steph20021 » Mon Sep 28, 2015 6:45 pm

I was in the hospital for a solid 2 weeks, and had my NG tube for 9 days which I could hardly bare. I was begging for liquids by the end, and my doctor said I could have a little bit. The nurses were frustrated with me because every half hour they had to empty the canister :roll:

I didn't have any complications, but my bowels were slow to get moving hence keeping the NG tube in. I ended up with my temp ileostomy again, but I won't complain. I had several low grade fevers, and I felt very very hot much of the time which was very uncomfortable. I slept with ice packs under my armpits many a night, and I didn't know if it was due to the surgery or due to the hysterectomy - maybe both? I didn't want any visitors except my immediate family until the last 4 days.

While I was in the hospital, I didn't think I would ever do it again, but now 7 weeks out of hospital I can say I definitely would do it again if it meant a chance to be NED or to lessen my cancer pain.

The nausea still comes and goes but no vomiting. I can only eat tiny bits throughout the day but I believe my weight has stabilized. The fatigue will be the last thing to go says my surgeon. I can make it around a small block but Ill be a bit breathless.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

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rwightman
Posts: 211
Joined: Sat Jan 17, 2015 6:50 pm
Location: Southwest

Re: HIPEC (ers) - Compare Stories

Postby rwightman » Tue Sep 29, 2015 12:09 am

Steph, you are one month behind me. I think you will see huge improvements this upcoming month in both stamina and appetite (that is when I noticed big changes).
10/9/14 DX Age 50 - MSS
10/23/14 - Colon Resection - Stage II - 0/15 lympth nodes
12/30/14 - Stage IV - 1 liver met 2cc - Liver Resection - No lymph nodes and margins clear
3/10/15 - peri mets
3/15 - Folfox with Avastin - 7 tx
7/15 - HIPEC - 2 peri mets
10/14 - resection of abdominal met
11/12 - 5FU

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: HIPEC (ers) - Compare Stories

Postby Steph20021 » Tue Sep 29, 2015 2:48 pm

rwightman wrote:Steph, you are one month behind me. I think you will see huge improvements this upcoming month in both stamina and appetite (that is when I noticed big changes).

That would be great! Sometimes I blame myself thinking Im not making enough of an effort. But my peristomal skins been sore lately making it hard to want to walk. Im hoping it heals up more soon too.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab


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