Metastatic peritoneal cancer ! Pleased for spell check

Plum1360

Hi Jeff and a very warm welcome to the online community

I can't answer your questions, as I had a different type of cancer, but I noticed that your post hadn't had any replies yet. By responding to you it will 'bump' your post back to the top of the discussion list where it'll be more easily spotted.

If you don't get any replies from the other group members you could post your question in the ask a nurse section of the online community and one of the specialist nurses will aim to reply within 3 working days. If this is something that you'd like to do clicking on the link I've created will take you straight there.

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• Hello Jeff. I was diagnosed with stage 3c PPC. After many chemotherapy sessions and HIPEC my cancer is now undetectable. I was on a maintenence drug called Lynparza for 2 years. My ca125 has been at a 2 since December 2019. I have high hopes. If you have any more questions please feel free to ask. Sorry for being so brief. Have a good day

Thanks for that. A glimmer of hope? Mine is stage 4 and I do not know what 3c PPC is. Hipec is not available up here. I am afraid that I do not know ca125 either..... I just know I am knackered after 3 sessions and not looking forward to 4th on 24th.(or the next 4) The periferal neuropathy is getting worse and my fingers don't work !! My gut aches all the time and I alternate runs and bunged up!

Enough said. Thanks for the reply.

Hi Jeff, CA125 is also called tumor marker , can be measured from blood samples. However the values are not very accuarate since they detect also dead tumor cells and not only the living. But a trend in combination with CT results may be seen over time.

Do you know if your tumor is MSI instable (microsatellite instability is a good indication if e.g an immunotherapy could be working.)

Good luck

Thanks Leonie but all that means nothing to me. All I know is my CIA? were up after a blood test in November and a scan revealed many small tumors and a biopsy confirmed metastatic cancer of the peritoneum, stage 4. This is 2.5 years after a partial colon removal. I am about to have my 6th dose of CAPOX and am suffering gut ache, neuralgia and confusion. I am told this treatment is palliative and I guess that means incurable. Been told that after 8th treatment I get 3 months off. Had a scan last month and oncologist said 'good news' !!! It is no worse........ I do not know whether to update my will, appoint executors and make a power of attorney or just get pissed 

Correct, it's very bad. I am there, too. And you alone have the choice how to live the rest of your days, how many there may be. It's probably wise to think of the practical things like executors,  power of attorney, patient provision etc. . Palliative means they try to make your pain level as best as possible. You decide about your own attitude, whether to try to enjoy your days or wail constantly. Nobody can or will live your life - as hard as that sounds and is.

It may not help much but you are not alone, I was told exactly the same (another primary tumor, however) and it's really quite interesting to observe how empathy is working. For  me, I decided to enjoy my life as best as possible and laugh a lot with my family and friends. After my successful chemo the tumor came already back again, but now I am treated with immunotherapy which is much better than chemo. 

Thanks again 

Pleased your keeping your 'chin up', I intend to do the same. Just wish I had a timescale.

6th chemo tomorrow.  Urrrgh4.

Tough, the more sessions you get. Good luck and cheers. Timetable is on daily - weekly - up to few month level. It gets better once the chemo is over. Fresh air and distraction help.

If the side effects get too much you may duscuss with your onkologists how useful the remaining ones are. If you take a combination of 2 actives ask if continuing with only one is also possible. For me the last sessions were with Carboplatin only.

Keep in touch

Hi Jeff,  my husband had a successful bowel resection following bowel cancer only to find after completing his chemotherapy that he had a growth in the peritoneum and two nodules in his lungs. We are going to the big hospital in Barcelona on Thursday (we live in Spain) for pre-op testing and cryotherapy.  I guess if they are operating there is hope.  I know no two cases are the same, but just letting you know where we are in this process and sending you hugs and support

Well good luck with that and thank you.. I'm 4 days after 7th dose and wrecked. Hope all goes well for you.