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Trial immunotherapy or only chemo

Denise1977
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Hi so after have been told my 3rd diagnosis since 10.6.now is tripple negative breast cancer with mets only in lungs.Before I was told it was a primary in lungs.Anyway.

I am still waiting for starting treatment from 10.6.which I found disgraceful suffering from cough and pain and now on codeine everyday.I was offered an immunotherapy trial stage 2 but there is no information if it works or not and read the terrible side effects.Anybody with stage 4 breast cancer has experience just to have chemo and if it's working?

I am not very keen to go on trial which I don't know if it's makes me worse and also I read with immunotherapy people having bad skin rashes which I am sorry don't want it.I had no issues with chemo when I had it first time.I would like to know if the chemo can shrink the tumor in my lung and breast because I am planing later to have a private surgery to remove my breast and get sorted the lung.I am a kind of person that is not happy with just a "stable"condition.I want the cancer out even I know it might come back.

This trial is also very new and don't really want to be  in hospital every day because they saying you will have to go more often to have tests.

I am confused I would prefer just to have chemo.

  • Hello Denise1977, 

    I'm sorry to hear that you're still waiting for treatment to start. It sounds as if the team have been trying to pinpoint exactly what's going on and where the cancer has started so that they can offer the most appropriate treatment. Not always an easy situation for you as the patient to have been waiting so long. 

    I know from your previous posts that trial immotherapy was previously considered an option but then the consultant felt it wasn't. It sounds as if they've offered this to you again? Either way you don't have to accept the offer to take part in a trial if you feel that you'd rather not. It's your choice and shouldn't impact on the other treatment options that are available to you. 

    I'm wondering if before you make a decision you'd find it helpfu lto talk things through with one of our team of nurses. You can call them freephone on 0808 800 4040 and they're available Monday to Friday 9am to 5pm. 

    Best wishes, 
    Jenn
    Cancer Chat moderator

  • Offline in reply to Moderator Jenn

    Hi Jenny thank you for your reply.My team I am sorry but it's pretty bad.Keep changing their minds every minute and I am the only who is suffering.This trial when I read the paper my hair stood up on my back of the neck,this trial is new and just tried it on mice and the side effects are like from horror story.

    Meantime I got worse for 3 days I could lift my leg,I am only 42 and don't want to end up on wheelchair,now I can't sleep because of the rib pain and nobody cares.

    They just keep me  waiting,I don't trust this oncology team anymore and I think this trial would make me worse if it's no proof It can help I am not doing it.

    After I threatened with legal action finally got phone call to have blood tests done and CT before chemo.so hopefully I can start "This year".

    I find it cruel to make people get waiting until get worse,and it's disgraceful that just because I am stage 4 I have to book cemetery and they written me off.

    Anyway I will go ahead with only chemo and if they refuse later more treatment which I can expect they will say later I will go private because I am not willing to book my funeral anytime soon.But when I see my doctors they just can't be bothered.

  • Offline in reply to Denise1977

    Hi Denise sorry thear dragging thear feet, but sometimes they kneed to be sure of your treatment, needs remember any mistakes make it worse for you, from telling me I had cancer to starting treatment was over FOUR months i had scans and biopsy in mean time but it was still a long wait that was 2016 February, best wishes.

    Billy 

  • Offline in reply to Billygoat

    Thank you Billy for your answer.But there is a legal time limit and you have the right to start the treatment within 2 months.Biopsies or scans doesn't matter they should speed it up then..I also refused the immunotherapy because they wanted me to do more tests that's mean more waiting.

    They already made a mistake so for me I just want any chemotherapy which would shrink the tumour and could have the surgery but by waiting it can spread to another part of body and then my plan of surgery will go down to the pot.Plus the tumours can grow bigger and bigger and now I can't do half of the things I could do 3 weeks ago.Since I have been diagnosed was just wasting time to go see the doctors talking about nothing.i am nearly choking on my own phlegm,can't sleep because pain in my ribs now even the codein doesn't help but the my doctors having sweet dreams in their beds.

    I don't think it's fair why I have to suffer?

     

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