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HIPEC April 16th--getting jittery

sk_Nebraska
Posts: 26
Joined: Sep 2013

Hi! I have seen most of you posting on the Ovarian board, but will post here since technically we still don't know what the primary cancer is.  It's been quite the 8 weeks waiting for clearance of a neurologist after a TIA to have an exploratory laproscopic surgery then the Hipec the neext weeek.  Getting bombarded by spleen removal, bowel resection necessitating stoma oand bag. Can anyone say something POSITIVE to get me thru?

Alexandra--YOU WILL GET INTO the trial!!!!!

thanks, Sue

Alexandra's picture
Alexandra
Posts: 1246
Joined: Jul 2012

Hi Sue,

Sorry I didn't see your posts until now. If I understand correcty you were diagnosed PPC via laprascopic surgery last May and had neoadjuvant chemo that worked fine and now you are about to have full debulking with HIPEC (heated chemo). Please correct me if I am wrong.

Whatever you're imagining now is much worse that the actual surgery. It is really not that bad.

I did not have HIPEC. 2 years ago I was looking into HIPEC and I was told at the time that it was rarely done for ovarian cancer and never done if cancer has already escaped peritoneal cavity. It has potential for cure, but it has higher morbidity and mortality rate. It is only done if patient is young and in excellent overall health. Not a single surgeon does HIPEC for ovarian cancer in Canada where I live (I talked to 5 surgeons in Ontario, Quebec and British Columbia).

At diagnosis I also had cancer cells embedded in the omentum (omental caking) as well as 1 large tumor (9 cm), many peritoneal mets (studding) and ascites. Surgeon removed uterus (left cervix in at my request), ovaries, fallopian tubes and omentum. My appendix was removed 30 years ago. There was a lot of talking before the surgery about potential bowel resection and temporary iliostomy, scaring the sh*t out of me. It is only done if surgeon sees that cancer had invaded your bowels or if there are adhesions connecting bowels to other organs. I know plenty of people who agreed to a stoma and either had it reversed later or learned to live with it. To me it was not an option and I did not sign consent to ileostomy. I don't recommend that you do what I did (fighting, lawyers, etc.). Rather explain your feelings about the stoma to the surgeon and ask them to do their best if it could be avoided. Goes without saying that you want to have the best gyno-oncologist money can buy, someone who has done hundreds of those surgeries, ideally at the teaching hospital.

Surgery itself took about 2 hours. It was open laparotomy leaving a long vertical scar (about 14"). I know others who had laprascopic surgery or horizontal laparotomy. I asked for both morphine and epidural. I woke up with morphine / epidural drip and catheter and was not in a lot of pain. I was able to get up and walk around the next day and was out of the hospital after 3 days. Staples came out after 2 weeks. By then I was able to drive, do almost everything and took minimal painkillers. Pathology report / staging should be ready 2 weeks after surgery. My only problem was that incision partially opened, so I had to go to the nursing station every 2 days and get it packed for several months till it finally healed.

Buy yourself some large (3 sizes too large) underwear, a soft front-closing bra, and a surgical abdominal binder and wear it for at least 4 weeks after surgery. It's hard to get in and out of bed without a binder. If you have a comfy recliner, you could sleep in it for several days at home.

Full recovery takes 6-8 weeks. Don't be a hero with housework, rest a lot, ask for help or hire someone. If you have a labor-intensive job, take a leave. If you have a desk job, you could probably do it after 2-3 weeks, but I wouldn't. Take all the time you can to heal and rest. Regardless of how great you feel after the surgery do not lift anything heavy, don't reach up, don't make any sudden movements, press a small pillow to your belly when you caugh / sneeze. Try to avoid foods and drugs that cause constipation / gas and drink lots of water. Gas is painful. Hernias are the plague that follows abdominal surgery. I got one 6 months after hysterectomy.

If you have any questions, PM me. Best of luck to you!!

sk_Nebraska
Posts: 26
Joined: Sep 2013

Alexandra, Your reply was fantastic!! You are so knowledgeable!!! As to labeling the cancer--hopefully the new lap surgery will tell us the primary site. For now onc, etc use signet (ring) cell adenocarcinoma but think that is to qualify me (Medicare) for specific chemo and the HIPEC. Another time the cancer was referrred to as peritoneal adenocarcinoma.  verry confusing, enen with the Internet! My  onc isn't satisfied with the lab analysis's--all FOUR labs said Bladder cancer, but urologist found only a minute spot, cancerous during scope. Second scope 3 months later, clear. Scheduled for  anotherr in August. Of course the scopes were post severral chemo.  Last May at dx CA 125 was 12,000--started Taxol/Avastin first of June--first treatment kicked its butt. Numbers dived immediately, CT in August showed dramatic change for better.Omentum is heavily seeded, tho.  Got a horrid infection in Sept., fell in Oct, neuropathy--onc changed chemo from Taxol .  Had consult with MedCtn Febr. 7th--so quit Avastin to get ready for surgery. TIA postponed surgery, but still off Avastin. As of April my CA 125 is back to 12K as in May 2013!!! Guess Avastin is important. Of course won't get back to it for weeks after surgery. Am unsure if high numbers will disqualify me from the surgery. From what I have read most have it after severral rounds of chemo have shrunk the cancer. Will meet with onc after the labs are in from the exploratory and will chat with HIPEC surgeon as well.

I know numbers rebounding so very quickly is not a good thing--but am pushing for quick return to Taxol/Avastin.  To h#@! with neuropathy, kill the stuff!

Thanks for listening.  I really do believe you will be on the trial--who wouldn't choose a fighter like you!!! Talk about bringing so much enerrgy to the trial and determination--

Sue

 

Alexandra's picture
Alexandra
Posts: 1246
Joined: Jul 2012

Do you know why your ONC didn't try platinum chemo (Carboplatin, Cisplatin) first? Along with Taxol it seems to be the main "go-to" chemo for ovarian and PPC patients.

High absolute CA125 number (and 12K is very high) does not have much prognostic value and I doubt that it could disqualify you from surgery. It's the CA125 trend and gradient (speed of increase) that are linked to disease progression.

I think if the debulking is deemed optimal during surgery (no visible cancer left), they will proceed with heated chemo wash (HIPEC). Otherwise, will close up and re-start regular chemo in about 4 weeks after surgery. In case they will not proceed with HIPEC, you might want to discuss the option of IP (intraperitoneal chemo) and sign consent in advance; I didn't and I had to have a separate surgery after to install IP chemo port.

The links below are some easy info on HIPEC

http://www.drmulier.com/3%2T0en%20pat%20info%20hipec.html

http://www.medscape.com/viewarticle/806289

http://www.mskcc.org/videos/hyperthermic-intraperitoneal-chemotherapy-hipec-recurrent-ovarian-fallopian-tube-and-primary-peritoneal

seatown's picture
seatown
Posts: 224
Joined: Sep 2012

Just want to say -- thinking of you & wishing you the VERY BEST! HIPEC has never been mentioned as an option for me, & I've never asked about it, but I've read that it has had good reults. Keep the faith!

Carole

sk_Nebraska
Posts: 26
Joined: Sep 2013

Wow these sites are great! Thanks for the very useful tips:) Yes, I had carbo with the Taxol and Avastin--forgot it. If surgeon declines the Hipec due to increased numbers, etc--will make it more difficult to get a really complete debulking--I plan to resume chemo--to blazes wtih the neuropathy, I was having great results before schedule got mucked up in November.  Then when numbers are down, will try not to repeat the TIA, fall down, catch some very obscure horse virus and try to get a HIPEC rescheduled.  So have options, and there are several more drugs to try if needed. 

Everyone enjoy  the sun--wheneverr it appears in your vicinity. In Nebraska we have a saying (very  accurate saying,"Ifh you don't like the weather,wait 5 minutes it will change."  Had snow yesterday morning, overcast skies and drizzle twice and bright clear skies twice.  

Sue 

sk_Nebraska
Posts: 26
Joined: Sep 2013

Hi, Just to update:  Had the "look see" for the sscheduled HIPEC whish is the 15th, not 16th. The University of Nebraska Med Ctn/School is fantastic! The surgeon Dr Jason Foster is super. Well respected susrgeon plus a high level of compassion and clear ecplanations to family and patient. He did not find as miuch cancer as we anticipated--with all the detours this winter, CA 125 numbers had gone up significantly.  Of course now I wonde where is it hiding?? He told us after yesterdays look see that i am an excellent candidate for the HIPEC, anticipates saving colon, will anticipate adding "multiple years" to prpognosis.  I know miultiple can meen 2--I am thankful for anything I get:)  Or if it is days, still grateful. Daughters arer here for surgery, one is a doctor, friends support netwok is incredible!! Our church frineds have been signing up to bring meals.  It is a website maintained by a church in Vermont. Meal Train is the website.

I am scared about being under anthethetic for 10 plus hours as I am 68 years old. But.....I absolutely trust my surgeon. Am also a 15 year Stage 3 breast cancer survivor--oine total masectomy, 6 months chemo clinical trial that has now become standard of care.  Will update once I am coherrent after surgery.

not fixing typos, sorry:(

Thank you for all the great support you all provide here--it is lifesaving.

Sue 

Alexandra's picture
Alexandra
Posts: 1246
Joined: Jul 2012

With the surgeon you trust, I am sure your operation will go great on the 15th. And your strong support system will pitch in while you're recovering.

Here's to multiple years cancer-free!

Hugs,

Alexandra

seatown's picture
seatown
Posts: 224
Joined: Sep 2012

Just--good luck! Will be thinking of you. You'll do fine, & we all look forward to your update.

Carole

sk_Nebraska
Posts: 26
Joined: Sep 2013

Alexandra and Carole--Thanks so much for the support and info. It's amazing how the old "cup" remains half FULL with the help of friends. I am so sorry aabout the loss of JulieBelle--another woman who saw the cup/glass as half FULL to be sure!!

Enjoy the weekend!

Sue

seatown's picture
seatown
Posts: 224
Joined: Sep 2012

Yes, Sue how are you? Hoping all went well. Please let us know you are dancing in the streets!

Lovingmymom's picture
Lovingmymom
Posts: 44
Joined: Nov 2011

Good luck Sue! I haven't posted in awhile but wanted to wish you well with your surgery.  Here are my positive thoughts - you will do fine, because you are STRONG!!!!  Stay strong and focused and I look forward to hearing from you again when you are able to post!!!  Happy Easter!!!!!!

 

J-

Alexandra's picture
Alexandra
Posts: 1246
Joined: Jul 2012

Dear Sue,

I hope your surgery went well and you are not in any pain or discomfort. Please update us when you feel up to it.

Sending you hugs and healing thoughts,

Alexandra

Alexandra's picture
Alexandra
Posts: 1246
Joined: Jul 2012

How are you?

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