Going commando!

  • 14 replies
  • 48 subscribers
  • 968 views

I hope those of us who want to chat about our decisions, experiences and anything else regarding not having treatment, can do so here. Those who respect our decisions are obviously welcome.

  • Hi Jools, thank you for setting this thread up, i know it is going to be important to me on my journey, take care.

    Eddie

  • You’re welcome. I’m sure it will be important to me too.

  • Well done Jules! Let it all hang out?? 

  • I'm a definite supporter! 

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Annette, I think the name going commando may be getting changed,

    Eddie

  • Interesting thread with lots of different scenarios and variables.  Here's mine.  

    I've been on immunotherapy for 2 years and one month.  I'm pretty sure I'm going to stop at the end of May.  I have bounced all my thoughts around with my oncologist and he's fully supportive and says it makes complete sense. 

    The optimum length of treatment time for immuno isn't known.   The 2 years thing is just because the trials have been that duration.  There hasn't been a study to compare if you get better results after 2 years of treatment than 1 year.  We don't know what optimum is.  

    We do know from data analysis that interruptions in treatment don't change outcomes.  I had a 6 week gap from immuno for an immune related adverse event to calm down.  I could add on a couple of cycles to compensate anyway, I thought!  

    The vaccine trial I am on (modi-1) is for 2 years.  My oncologist thought that after 6 months the vaccine stopped.  When I showed him the schedule he advised the shorter time period must have been a previous schedule.  This made me think that the trial duration was just a starter-for-10.  Finger in the sky approach.  

    Immune related adverse events are a thing for some people.  I'm one.  There is also evidence that people with immune system reactions are fortunate in getting better outcomes in terms of overall survival.   I had another one in December, possibly lichen sclerosis, which has a low risk of leading to vulva cancer.  This was a huge wake-up call.  Treatment causing a new cancer - this is where perspective and pragmatism is required.  I quickly adopted a new objective - stop treatment before I get an unwanted side effect.  

    Over two years of the treatment my stance has drifted from "a big fan" to "there's no such thing as a free lunch".  The challenge to the immune system is real. LOL

    I haven't told my onco yet about my decision.  But the more I think about it, the more convinced I am.  The numerous appointments were getting to me and conflicting with personal events.  I got fed up of perceived telling-offs when a conflict occurred.  Or the disapproval when I had to phone and cancel (job interview clashes) or being emailed the T&Cs of the trial and suggesting I could be no longer eligible.  Those emails are for the Drafts folder.

    But now I've made the decision I can't wait for the end Joy     

    Told my husband.  He was in the "why would you want to stop?" category at the start (2 years ago).  He now says "that's a decision only you can make".  Yep. 

  • I am conflicted about saying I enjoyed reading this, but I’m sure you’ll know what I mean by that. You have made a very difficult decision, and no one can say otherwise. I don’t think anyone really gets the impact that continuous and endless appointments has on our mental health. I take comfort from your experience as I know this would be the same for me. I hope we both prove that we know what we’re doing, and that it’s right for us. Take very good care of yourself.

  • Hi Mmum, having made the same decision 4 months ago I know how difficult and strangely at the same tine quite an easy decision to come to, take care, PS 3% oy cancers are caused by scans.

    Eddie

  • Hi I had to stop the Trial Drug I was on but not because it wasn't working because it had been working well but because the side effects were non stop! I too had several weeks where I stopped taking them throughout the just over 3+ years I was on them. Then the final time I came off them, I chatted with my Oncologist and said the side effects were getting too much to put up with and were making me miserable. We discussed Immunotherapy but decided to "watch & Wait" rather than start it immediately. That was in Sept 2016, so it makes me wonder how much we really know about these drugs! We are still "Watching & Waiting)!!!  
    It makes me wonder how many other people could do this! My oncologist and I also discussed scans and decided to have them once a year and see what happened!

    Now I am not only lhhiving with incurable cancer but living with all the side effects I have been 'given' by the treatment!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Nearly 3 years ago when my cancer started to spread after a good few years of watch and wait I told my oncologist that if the treatment made me as ill as my initial treatment had then I wouldn't be going any further. My eldest daughter was in that appointment with me and did wait until we were in the car park before she exploded because she didn't accept my decision. However I have been extremely lucky and had few side effects to the treatment and it continues today. I do completely get feeling that your life is arranged around scans,  treatment etc and not too long ago I did think that the time had come to say enough and take my chances but now I have to survive until April 2025 to be at my daughter's wedding. I know that timescale isn't given but if I stopped treatment I know she would feel I her special day wasn't enough to live for.

    I hope everybody on this journey after taking such a brave decision gets all the support, love and friendship they need xx