Incurable but treatable

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Hi there, l am editing and updating this post in light of a new development. Please see my Profile on Onk for my full story.I was diagnosed 3 years ago with Primary peritoneal cancer. I have had chemo, immunotherapy, chemo again, debulking op and bowel surgery and a stoma and removal of my omentum and another couple of cycles of chemo. At that point, last December l was NED. Since March this year, l have been on Niraparib. I have been so well all summer but became ill just this last week. Yesterday Friday 13th October, l spent all day in A & E from 11am until midnight. I had a CT scan. I was on my own for the result. My cancer has recurred (as l suspected) … So on Monday l will be contacting my oncology team to discuss a possible plan. I am so glad l joined this forum. I already feel well supported. 

  • Hi Onk

    Well what can i say say, what a journey you have had,  though the best bit you are still here, to tell us.

    You will get a lot of support here, we hold each other up, when needed.

    We scream, cry, shout, have a rant, and have a laugh, and always some one here, to chat to.

    Every one here is on a journey of their own, and in different direction,  with the cancer they have.

    Though cancer is cancer, and only some one that has it, truly understands the emotions that come with it. i would not wish it on my enemy.

    I am sure my family truly do not understand, i do and try and hide how i am at times, being mum i try and protect them.

    Hpe others come along to welcome you, great bunch of people, and you will gain a lot from being here, i have.

  • Thank you Ellie. I have never managed forums before. I think l will find support here because it is only for patients so everyone understands. 

  • Yes you will find support and get it, i had never used a forum before, until i came here, you will get the hang of it, if i could, then so will you.

  • Hi Onk,

    Welcome to this group of incredible incurable.  As Ellie has already said in her welcome to you, there's a lovely group of people on here. Also, well done you for navigating this forum site, but the biggest WELL DONE is for the fight you have put up to still be here!

    We all have different cancers, and even if it was the same, we are all different and so is the treatment etc. One thing for sure is the feelings, our worries and the reactions we have are pretty similar. 

    I was diagnosed with endometrial cancer in Feb 21. Six days after my 60th Birthday. (It should be on my profile). Anyway, after surgery and carboplatin I was OK for about 7 months when I was told my cancer had spread to my peritoneum...I had never even heard of the peritoneum. Since then, I've had Carboplatin again Pacltaxel, a clinical trial  and recently started on immunotherapy. I won't know for another couple of months whether or not it's working.

    I remember that sentence, in July2022....I'm sorry but there's nothing we can do other than palliative care. I  thought I was dying, honestly, but, I'm still here too.

    New drugs, treatments etc are always being found so let's hang on to that and the hope that is still out there!

    Me and my partner have also been watching some of the re-runs of Only Fools and Horses too. So funny, yet predictable. 

    Carry on posting. Sending hugs.

    Helen Heart 

    Helen 
  • Hi Onk I just wanted to say what an amazing person you are! You have been through so much. I’m sorry that you lost a daughter and son in law. I don’t have children, but know that you never stop being a parent no matter how old your “kids” are. I really admire your strength and determination to take any treatment to keep you here. I hope you are doing well on your current treatment. Take care.

  • Hi Onk, wow you've been through the mill, your one strong lady. I won't repeat what others have said but uour very welcome. I take it one day at a time. Listen to uour body, and be kind to yourself  tired then rest, hungry eat, angry then scream or kick the cat (sorry don't kick the cat, it's just a figure  of speach) . Alit of people think our cancer will be overand done with and ring the bell, they don't realise some of us just have to live with it, as we have to,  so the lovely people on here you can let off steam here and be understood and supported.  Keep posting xx

    Moi

  • Thank you so much for your kind words. I have already realised what amazing, brave and inspirational people are on here. I am so glad l have found this forum.

  • Aw thanks - you have described exactly where l am at!!! At last l am among people who really understand. I am so sorry to hear the stories of others on a similar journey. I hope l can support them in some way too. I hope in the future treatments will be less toxic and that one day cancer will become a thing of the past.

  • Hi Wave thank you for your welcome. I have had Pacitaxel and Carboplatin. Immunotherapy - Avastin for a year. Carboplatin again and they added Caelyx which gave me the horrible side effects so they stopped that and continued with just Carboplatin. I had never heard of peritoneum either - l really hope your treatment is effective x

  • It would be lively to kill cancer for good in the future. I'm sure you will be able to support people, just welcome new people and be yourself as you come across as a lovely lady xx

    Moi