Even though this is my first post I have been on this forum since my mum was diagnosed with OC in Nov 2017 and you have no idea how helpful you have all been!!! I am actually a GP but have learnt more about the realities of OC through this forum than I ever did at medical school. 😊
My mum was stage 3c and responded well initially to chemo and debulking surgery. She was declared NED in April 2018 but her CA125 starting creeping up and some active peritoneal nodules were found on her PET scan last month.
Her oncologist wants to give intraperitoneal chemo and she had a port/catheter fitted last week. She is due to start next week but from what the oncologist said it’s going to be a very unpleasant experience. Has anyone had any experience with this? Is it really as bad as my mum expects it to be?
Really appreciate any first hand experience advice.
Thanks so much.
Cathy
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cathylegge
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Are you in the UK or USA? Intraperitoneal chemotherapy is really unusual in the UK so you may not get too many answers, but we have several ladies on here in the US so hopefully one of them can help.
(If you are in the UK, prepare for a vast interrogation from all of us, because we’ll want to know all about it!).
Ahhhh! I had wondered about USA because lots of women are treated with it there, but you called you mum ‘mum’ not ‘mom’ so I was confused...completely different continent was the answer to that conundrum 😄 Still hoping one of our American ladies will be able to help you.
If you want a bigger audience with more exposure to this treatment, there’s a big American forum called Inspire with a forum you could try.
As Vicki says, very few (if any?) of us in the U.K. will have experience of this.
I went to a study day in Reading last year run by TOC and asked one of the doctors from the Christie about it. He said it was something they’re hoping to develop. I think it’s more commonly used in bowel cancer. All I’ve heard is that it seems to be very effective. I think it is quite hard on the body but then all chemotherapy is, some worse than others of course.
I’m from Zim! Is your Mum in Cape Town or Joburg or another big hospital?
Thanks for getting back to me. My folks are actually both from Zim as well! My mum is in Durban at the moment. Has a fabulous, very dynamic oncologist who seems incredibly competent which is very reassuring. Unfortunately, unlike the UK, every thing is related to medical aid/ health insurance. Working in the NHS I see what the problems are here, but the costs that my parents have had to pay out of pocket has been horrendous. Her recurrence wasn’t visible on CT and was only picked up on PET scan which is not covered by their health plan. She was told to ‘use the scans wisely’ by an admin person at the medical aid!!?? 🙄😔
I think the intraperitoneal route is only used when the cancer is in a certain area and is less than a certain size. She has to have iv chemo at the same time.
Difficult being so far away at a time like this...
Yes difficult for you being so far away. It is just so hard when cost is involved...how fortunate we are to have the NHS, even if it struggles at times.
Best wishes to your Mum in sunny Durban. I hope her treatment is of great benefit to her and the side effects not too severe.
I think your mum is very VERY fortunate to be offered this treatment. I wished I could have had this, but I am in the UK, getting fabulous care at the RUH in Bath, with everything free, including risk reduction surgery for my BRCA1 positive daughter, but no introperiteneal bath.
I have heard that receiving this kind of Chemo is a lot more severe that IV, but that it is definitely worth the pain and torment.
Here is why:
“The addition of hyperthermic intraperitoneal chemotherapy (HIPEC), also known as a hot chemotherapy bath, improved survival rates by 10 percent in women with stage 3 epithelial ovarian cancer according to study results published in New England Journal of Medicine.1 Feb 2018
Chemotherapy "Bath" Warms Up Chances of Ovarian Cancer Survival“
I recently had HIPEC ( heated intraperiteonal chemotherapy) for a recurrence of ovarian cancer. The chemotherapy is administered during surgery. It is a long operation and I was in Hospital for about two weeks .I made a good recovery . I’m currently having systemic chemotherapy Carboplatin and taxol and avastin and will be on maintenance avastin . I wish your mum all the very best with her treatment . D
My sister received HIPEC during her debulking surgery here in the states last may. We were thrilled that she was able to receive this treatment. Her treatment lasted 90 minutes where the chemo is basically massaged into her abdominal area and then was washed out. The only side effect for her was a lower appetite and some foods that caused upset for about a week..that is great that your mum can receive this treatment.
Hi Nancy. Thanks so much for replying. So glad the side effects weren’t too bad for your sister. I’m hoping that the oncologist is just explaining worst case scenario and that my mum will be pleasantly surprised!! 😊
I hope so too. When is this scheduled again to start? My heart goes out to you and your family. This site is a wealth of information and hope. My sister was advanced with an advanced case, she has been cancer free since last may and just went skiing..sending you hope and a hug, nancy
I'm from the US and received 6 rounds of IP and IV chemo (taxol and carboplatin) following my original diagnosis and debulking surgery in 2015. My protocol was different from the HIPEC procedure some of the other ladies have described here (it didn't occur didn't surgery), but this protocol is fairly common in the US. if your mom's doctor gave her a port I suspect she will be having several rounds of both IP and IV chemo. FYI I tolerated the IP procedure quite well (considering it was chemo after all!) The biggest side effect immediately after chemo was feeling bloated from all the chemo sloshing around my insides. That subsided over the next day or so. I understand from some other ladies on Inspire (you should check this support group out also) that IP chemo is associated with a higher risk of scar tissue formation in the abdomen which may eventually cause a bowel blockage. But my oncologist said that the longer average period of progression-free survival (in patients with smaller tumor load left after surgery) made the IP/IV combo the best choice for me. I've been NED since 2015; so far so good! Best of luck to you and your mom!
Thanks so much for such an encouraging post. Really hoping she tolerates it as well as you seem to have. She had iv chemo today and first dose of intraperitoneal chemo scheduled for tomorrow...
I had an IP once back in 2007. They did one belly wash with taxol/carbo at the time of surgery. I also had a chest Port.
They were not able to use the IP Port a second time and removed it.
That said, with the debulking surgery, 1 time belly wash, and 6 rounds of tax/carbo I went into remission for 7 years. I think the IP, had I been able to keep using it, might have giving me a longer, progression free period.
Regardless, I would do it again if it was on the table.
Thanks so much Superkim. It really helps to hear from people who have gone through similar. Really hoping for a long remission after this as well. All the best to you.
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