Peritoneal 13 months in

Hi Elaine,I was diagnosed March /22 with advanced 3c primary peritoneal  cancer,they class it as gynaecological and treat it the same as ovarian in women,which I find strange.

I don't know much about men,but its obviously not a gynaecological thing,there needs to be alot more research done on this horrible rare disease.

I was told I too wasn't suitable at Basingstoke and the gruelling chemo didn't work either.

 I am now on palliative care but I haven't given up!

 I truly hope that your husband gets some answers,keep strong xx

Sending strength to you both. Ovarian cells are built in a similar  manner to the tissue/cells in the peritoneal hence similar treatments. I was diagnosed with 3c peritoneal cancer 1st April. 2018. Having had a full hysterectomy in 2018 and 6 rounds of Paclitaxel and Carboplatin I was clear until June 2020.  I Had the same treatment again and apart from hair m was relatively free of side effects and worked full time determined to fight it for as long as possible.  It returned each year since and I was at my worst. In the last quarter of  2021, where I was on a different chemotherapy and it didn't seem to work as quick and ended up in hospital for 8 weeks due to blocked and twisted bowel and sever oedema. I begged my consultant to put me on Paclitaxel and Carboplatin and once he did it cleared the cancer resting on my bowel and that soon unblocked.. I have had further gemocitabin and Carboplatin with Acastin and it got it back under control again. Its a hard and long journey as we know it will never be cured. I hear the juice regime works well for some. Wishing everyone that is fighting this horrible disease all the very best.. x

Hi Elaine, I too, like your husband have stage 4 mesenteric peritoneal cancer. It is not what they call primary peritoneal cancer but stems from a hemicolectomy I had in 2019. I have been on paliative.care since December 2021. I then had 8 sessions of chemo, using CAPOX. The side effects were horrific, with the peripheral neuralgia being long term but the tumors, of which I believe I have a dozen scattered  all over, have stopped growing, in fact I was told one or two have shrunk. I have CaT scans every 3 months and have now been off chemo for 12 months (due a scan on 24th May. Fingers crossed).

If the tumors are growing again I have been told I will go on CAPIRI chemo, the one hat makes your hair fall out!

Full sympathy to you and more so your husband. I am not aware of any other treatment for primary peritoneal cancer but have heard of both Pipac and Hipac, neither of which is available in my area!

Good luck AND.... talk to your oncologist.

Jeff.

Thank you , it’s a comfort to hear we’re not alone in this battle . He has had 10 cycles of folfox with panitumumab and 4 cycles of folfiri with bevacizumab .

oncologist is now trying a tablet form called trifluridine starting next week . 
we can only live in hope .

Elaine

I am currently on bevacizumab only,  Avastin for short, aches n pains are currently the side effects im getting and mostly manageable. I have had 16 weeks of chemo for the past 3 years and have no visible signs on CT scan after the 16 weeks.  I do wish you all the best. X

Hi Summertime, your story is a ray of light that this can be controlled longer than expected. I was diagnosed in 2021 and was also put on the same treatment as you. I had 3 rounds of chemo them a debulking operation and a further 3 rounds of chemo. I was then put on Avastin but it didn't suit me. My symptoms are returning and my bloods are now back up to 285. I have a CT scan in 2 weeks and will shortly be back on chemo. I hope I can last as long as you. Good wishes with your fight and everyone else on here.

ElizabethB, wishing you the very best with the  chemo. My symptoms have returned with tumour markers around 360 2 weekd ago but I have had 2 lots of Paclitaxel and my 3rd on Wednesday so I am planning on obliterating it again. I have many things I need to do and I'm not stopping yet x sending love and light to everyone xx

Hi Summer 2018. You are an inspiration and have lifted my spirits enormously. Thank you.

Hi Summer. 4 weeks ago I managed to walk a mile round a local lake and felt brilliant. 3 weeks ago I started feeling unwell again and my legs got weaker again. Cut to today my tumor markers are now in the 500's and will be back on chemo next Tuesday. I can't believe how quickly things can change. I should have had a drain today but the radiographer says there isn't enough fluid to drain. My abdomen just under my breasts is very swollen and uncomfortable but he says it is not fluid. Now worried what that can be, I can't reach my feet for the swelling and feel constantly sick. Have you had any problems like that?

Hi Barnard. How are you coping with this horrible disease now,

I am just about to start my second course of chemo after my tumor marker shot up to 505. I am in constant discomfort and swollen upper abdomen.  I find it impossible  to reach my feet. Keep fighting. xx