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my wifes hipec surgery

rrrm
Posts: 1
Joined: May 2013

background: I am 43, my wife 39, we have 2 boys, 5 and 9...........................

my wife was diagnosed with stage 4 colon cancer in March 12. she had 12 rounds of chemo (1 every 2 weeks )

last one was sept 12. she was scheduled for hipec dec.4,2012 ..somehow she got an awful staff infection in her foot late october

and was in hospital for 8 days. luckily she was well enough to have the surgery in December as scheduled,,,,

Since then , it has been a nightmare.. ( not to be negative about all this, just letting you know how hers went)

Her hospital stay was 14 days and she finally got to come home a week before christmas , yay Smile!!

the day after christmas her incision started leaking really bad, so back to the hospital we went.

she stayed in the hospital for 9 days. ( she had 2 drain bags, they added a 3rd due to the spot that was leaking )

after she got back home, she was on a tpn ( her feed bag ,the kids called it )

mid january she started leaking again , so back to hospital .. another 6 days in hospital this time..

late January early Feb. she was off her TPN . During all this , we had to pack 2 different spots along her incision  that they

left open with gauze to soak up excess drainage.. (that was not for someone with a weak stomach)

late February, she was really weak and lethargic , i begged her to go to the hospital,but hard head said NO!

Finally , her best friend basically tricked her into going to town and drove her to the hospital, thank God she did,

she was horribly dehydrated and her whole body was out sync (enzyme level, blood count etc.) she also had an infection (fluid) on her liver and 2 more spots like it in her stomach area.. (can't remember exactly where)

Needless to say ,her Dr. was mad and told her had she not come in, she would most likely not made it thru the weekend ,due to her body being so out of whack.

this time , she was in there 15 days,and she complained constantly that her back hurt. they did ct's etc. but saw nothing to explain it.

when she finally got to come home, she was stil in continuous pain in her back. She had prescription lidocain patches,heating pad, morphine pills,oxycodone, you name it,she had it, nothing helped. They had put her back on a TPN due to her not eating and the dehdration. She also basically had to take a small trash can around with her in the house because she would throw up pretty much continuously She barely ate anything and i attributed that from having the TPN as many patients have a hard time eating during and after TPN'S ... So the whole month of April was about back pain and throwing up.. ( i felt SO bad for her) 

she had 2 more ct's in April and still, they found nothing. i told her it was probably her muscles being sore from her being pretty much bed ridden over the last 4 months and from the soreness when she stretched and tried to exercise them etc

Yesterday, she went back to her Dr. and they decided to do another ct and more tests...he had several radiologists , 2 surgeons, and a Dr. from Cleveland clinic look at it

They concluded that she has a mass ( tumor ) that is pressing into her intestine causng the pain and naseau .

They cannot operate on her because of her condition and i guess since she had the hipec not long ago,,,

i wasn't there when the Dr. came in, so I am not sure the size of it, but if it wasn't there or they didn't see it 3 weeks ago, why has she had this pain for over 2 months and that cannot be good it grew that fast,that quick is it???

Anyone with similar experiences or suggestions, please reply. Also, if you have any ideas etc. as what we should do from here.....

 

 

 

Chelsea71
Posts: 1170
Joined: Sep 2012

My husband, Steve, had HIPEC a year ago. He did not develop any complications. The whole thing went really smoothly. Once home, his only problem was back pain. He stayed on morphine for this reason only. It went on for months and eventually subsided. They attributed it to being on his back for such a long period though out the surgery and recovery. Did they see a tumor or are they guessing that that is what it is? Sorry, I'm not much help. Sounds like you've got your hands full.

Chelsea

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

Have not had similar experience but just wanted you to know I will be thinking of your family and hoping for the best. Maybe you might want to call the doctor ( he may even be on call this weekend) and ask him some of these important questions. Please keep us updated and we will be there for you through this hard time. ~ Ann

Trubrit's picture
Trubrit
Posts: 4759
Joined: Jan 2013

First that your wife is so young to have to suffer so much. 

For you and your chiidren, may you find comfort.

Have your seeked a second opinion? Third? 

I wish I had something I could tell you, but I know there are others out there who are suffering that can help you.

All I can do is let you know that we are here for you.  Its cyber space love and thougts, but I have found that they work just as well. 

Keep us informed. 

gk-01
Posts: 6
Joined: Dec 2012

I feel your pain. my sister had colon cancer 3 tears ago, surgery/chemo=ok, than colon cancer met to uterus=hystorectomy/chemo=ok,

than met to perotaneal =hipec in ny presb hospital. It went down hill from there. Not only did her surgeon offer not much interrest afterwards-the team of inexperienced doctors visited in recovery-same wound situation, weaping- not healing properly. which in turn rendered her not able to receive systemic or IP chemo because of the wound. Hipec was jan 14,2013- she is now on hospice care and dying.

Hipec doctor stated after surgery that "he got all the cancer during debulking" removing the gall bladder,omentum.Later to read report that he was unable to scrape all cancer due to the fact that it was on the diaphram. Suggested chemo would finish the process.

 

After seeing her go through such a drastic treatment only to not be able to eat, suffering miserably since hipec, on tpn, drain tube from stomack, etc.

It is my opinion that her doctor mislead us on her "rating" before hipec and lied about results after surgery. Some of these doctors are in this to get rich and lie about theyer treatment to reeive more funding and they should suffer similarly to the patients they mislead!

I am obviuosly angry at the treatment she received from a surgeon who supposedly had perfromed about 200 hipec procedures.

Best wishes to anyone suffering from such a horrible decease.

doctorc
Posts: 12
Joined: Mar 2012

Wow what a journey you all have been on. My beautiful bride of 41 yrs has also been on one. Breast c survivor of 3 years. then appendix c shows up, stage 4c. did folfox and folfuri it shrunk some. unfortunately appendix is not curable with chem o  (found that thru research, not doctor) we were also drug along by a group in Arkansas at UAMS.  if we do it over, GET TO MD ANDERSON!!!  DONT STOP AT THE MICKEY MOUSE PLACES. GO TO THE BIG  HOUSE.   it would have saved us a lot of trouble. she had hipec April 5, 13, recovering in Houston now.  she did really well, 22 hr surgery!!!  yeah, longest ever at MDA for Hipec.  Dr Keith Fournier is an angel...use him. wonderful team, diligent.  she is having usual post stuff: gastric, nausia, . diarreah.  we have the diarreah in control with Imodium (tip: start the Im immediately, dont let them do "natural type like metamucil.

having another small hurdle with morning nausea.  She has the GJ tube still in, . Tip: caregiver needs to essentially become a nurse. drain often, esp after the diarreah is under control. system stops up. flush often.  Tip: the drain tube will pop out after a couple of weeks of draining GJ tube.  have paper towel handy to wipe inside of Gastric line and get out stomach stuff.  be careful to not let any tissue stick in tube.  then drain will have a good connection.  Eat light and no fats .  or heavy sugar.  you are asking for trouble.  her best foods:  eggs, toast with little or no marginane, baked chicken, baked potatoe, apple sauce.  we also mixed up tuna with mayo for high protein.  drinking half strengh Gatorade good. lots of water, dont dehydrate.  like dr f said this is a marathon, not a sprint.  and boy was he right. 

wishing you the best.  contact us often.  we are heading home next Friday May 10.  Praise God. 

 

Maxiecat's picture
Maxiecat
Posts: 544
Joined: Jul 2012

I am so sorry... She has been through so much.  I don't have any words of wisdom to share as I am still in the process of trying to figure out if HIPEC is an option for me.  My new dr at the Univ of MD wants to see a pt/ct scan and have my pathology reviewed by his dr.  we are not sure of originsomeone might be appendix ... But then again it might be colonic???

 

alex

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