New plan

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Having been told the immunotherapy was working and the disease was stable, it's been shocking to discover it is actually the opposite.

It's grown. I now have suspicious lymph nodes too...fun! So, reading between the lines, I'll be dead by the end of this year. To say I am devastated is an understatement. 

Two options open, no treatment or weekly chemo. I've gone for chemo. I've been put on the trials list, not sure there will be any suitable.  I neeeeeeeed to be with my kids for as long as possible. I never want to leave them. Ever.

I am numb, confused and petrified (dare I say angry????). I clinging on for miracles. Apart from pain, I am doing good. I can walk, talk, think. I can tell pain camouflaging jokes - the lot! How can I be dying?

Anybody on/ had weekly chemo with any element of success? Please, please, please I am desperate for any glimmer of hope.

  • Hi JB so sorry to hear this  news. I can’t offer any hope as do not know anyone in this position but hopefully someone on here will be able to give you some hope. Hope you are pain free and able to access a good hospice close to you. 
    love Jac x

  • Hi so sorry to hear this news but miracles do happen I was only given 6 months to live issues with a ds 1500 in 2019 and I am still here I had to have weekly chemo also just thought this might give you some hope so don't give up hopeing huge hugs xx

    Flippen
  • Hi JB 2022

    I really feel for you having to go through all of this and especially with you being so young. It's just not fair! You will obviously have a whole lot of emotions to deal with, some will come and go, some will stay around a bit longer and new ones will come along. 

    I'm in a similar position as you. If you read my profile,  I too feel that I was misdiagnosed,  fobbed off with menopause and due to this, delayed diagnosis. When I eventually had a biopsy of my womb, I was diagnosed with serous adenocarcinoma. Stage 3A grade 3. Had a radical hysterectomy followed by 6 monthly cycles of carboplatin.  I now believe I should have been given radiotherapy after treatment, as 10 months later, I was told the cancer had spread to my peritoneum...nothing they could do, inoperable. incurable but palliative chemotherapy.  Devastated!

    Since then, July 2022, I've had 4 months carboplatin...wasn't working so went on to have 18 weekly sessions of paclitaxel.  I felt great on this but told the tumours hadn't shrunk.  Started a clinical trial mid May and have had nothing but problems. Constipation, diahorrea, pain around my sigmoid colon, fatigue, lack of appetite etc. Go for results tomorrow but I know they're not going to be good. 

    I've heard good things about RM but I don't know how you get referred, is it through the oncologist? I was told last year there were no options out there but like you, I'm clinging on to a miracle.

    The weekly treatment was fine, far better than I  expected.  I have a PICC line which makes things easier...ask about this. Many on here have incurable cancer but some are more treatable than others, even that doesn't seem fair. I know people say that new drugs are being developed all the time but some of these you need to be eligible for.. so annoying!

    Ask as many questions to your medical team as you can, and as you have already to others on here, you never know what could come up.

    I wish you well...you're not alone, and keep the hope alive!

    Love Helen xx

    Helen 
  • Hi  

    I'm sorry to read that the immunotherapy has not worked for you. What an complete letdown though, to be told you're stable then not !!!??? Well done you, on going for weekly chemo. I would have doneMusclehe same. Keep that fighting spirit Muscle.

    A x

    Muscle

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  • Fabulous! Thank you so much...hope is precious, you've fanned the tiny flame I had. X

  • Honestly, it's been like that the whole way through. So ridiculous! I will take any offer of treatment I get, not letting go of hope yet - no way!

  • Hi JB I'm sorry this has happened it really is bad enough without this.

    I always say Where There's Life There's Hope

    So I hope you hang on to that and a miracle Trial comes up for you asap!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!