Primary Petritoneal Cancer

Hello Julia. I recieved 7 rounds of chemotherapy which was carboplantin and taxol. I had a severe reaction to the taxol so I had taxolitere, I'm not positive thats how you spell it please forgive me. Yes HIPEC is in its trail stage here too but it was offered it and I said I'd do whatever it takes to survive. And it was one of the best decisions I've made. I was told I'd never be completely cancer free but they have medications now specifically for our gene mutation that help keep my cancer asleep. So my cancer has been sleeping for 2 years. I did not need anymore chemotherapy after my surgery. My surgery lasted 9 hours. If you have anymore questions please feel free to ask. Sending love

Thank you so much for sharing your story. You're giving me so much hope. Our cancer is very rare and I'm very grateful to be able to talk to someone with same diagnosis. I'm so pleased you're ok now and HIPEC has been wonderful for you. Did you have chemo 3 weekly?  Have you changed your diet? Do you believe sugar feeds cancer? Have you been using any alternative treatments? Have you been in contact with someone else with same diagnosis? Sorry for all them questions  :) Best wishes 

Hi Glenisanne, did you have a surgery with HIPEC? How long will you continue with Olaparib? I've got stage 3c of PPC , had 3 chemo so far and surgery ahead 

• Hi Julia. No, I didn’t have HIPEC with my surgery which I think is not used, or is still in trial stage, in this country.  Thankfully the 6 sessions of chemo and the operation cleared all signs of cancer but with this cancer it’s unlikely that it is the case.  I’ve been on Olaparib for a year now so another year to go in line with NHS guidelines.  As I said before, I am well and living an active, relatively normal life; it’s only Covid and concern about infection that holds me back as Olaparib is an immunosuppressant. My CA125 level is stable at 7. My care has been great and I feel confident I’ll be going strong for a good long while. Sending you lots of good wishes and hope this helps.  I didn’t think I’d be in such a good place two years ago when I was first diagnosed. 

Thank you Glenisanne for the positivity. Really good to hear that you're living normal life after all. I'm also in the UK and aware of HIPEC being in trial stage but I really like the idea of it and my plan is to go for it. How long after your last chemo was the surgery and how long after surgery was your 4th chemo? How long it took you to recover from surgery? Hope you don't mind all them questions. Sending best wishes 

I had chemo on 11th November 2019 and following a scan had my operation four weeks later. I did feel OK for Christmas at home with the family. Chemo started again on 31 January. Think those last three chemo sessions were the hardest: I had some difficult digestive problems though they did settle eventually with the right medication (awful constipation, whatever I ate or drank). I’ve always had problems in that area though. After the last three chemo sessions I started to feel much better fairly quickly. I didn’t start my Olaparib treatment until September due to the pandemic and concerns about immunosuppressant effects. I did though have a low CA125 of between 8 and 11 and my final scan looked good. Eventually I hard to start Olaparib or give up on it - they are a strictly controlled drug and guidelines follow efficacy established through trials. After some 8 months my consultant said he would not be able to prescribe them if there was further delay. The full dose was too much - they made me very fatigued but the two third dose works fine and there are no plans to up the dose. Sending you my best wishes and all the best for your care. 

Thank you for your response. What are the prognosis after having Olaparib?  Has Dr said anything? Do you mind telling me your age? I'm 37 and have been told that I'm  very young to have this cancer, typically is 60+. Sending best wishes 

I was 67 when I was first diagnosed though I will have probably had it a year or so before then without realising it.  My consultant is clear that whilst I am on Olaparib it won’t return.  Once this medication stops in a years time then there is no certainty but my consultant says there is at least a 20% chance that it won’t return at all, and probably higher given I have responded so well to all my treatment.  If it does return at some point then I’d probably be offered chemo again.  I had breast cancer at 48 years of age which I now know was related to my BRAC1 gene from which I fully recovered/ was cured.  I know it’s hard and you are  young, but great things are happening with cancer care/ therapies and it sounds as if you are getting excellent care. Take care and all the very best. 

I've not had any surgery offered so have no personal experience of HIPEC.  I listen to a podcast mainly concerned with living with ovarian cancer which is often interesting but the most recent episode would be a good listen for you since the woman interviewed (Karen, episode 11) did have it (she is in US) I an hoping to post a link to it here> 

https://anchor.fm/diane-evans-wood/episodes/Ep-11-Karen-seizing-the-moment-to-follow-the-sun-e161tbc/a-a6c69eb