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Follow up on immunotherapy

Williamp
  • 9 replies
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Hi all.

Hope you are all doing fine, haven't been on here for a while, been concentrating on my own journey. Just thought it was time for an update. 

If you have read my previous post or my profile, you will see I was diagnosed 3 years ago with penile cancer, then lymph nodes removed,  then cancer returned 8 months later, then further scan revealed it had spread to my lungs and was stage 4,  incurable. That was 2 years ago this week, was offered a immunotherapy trial, for 2 years, which has kept cancer under control,  last treatment was couple of weeks ago, so now just case of having scans and follow up appointments, hoping that my immune system is keeping it under control, and if not what is best course of action at that time. With out the trial I almost certainly wouldn't be here now so glad that I decided to do it. I do believe it has extended my lifetime. And will always be thankful to nurse's and doctors for this

    1. Will just add mine was quite aggressive, so don't think just because mine came back quickly yours could do the same apparently it's quite rare.

  • Hi all, 

    Follow up here.

    Had my 1st ct scan after my immunotherapy treatment finished, and just had my trial nurse ring me to tell me the results are still showing clear, some really good news just before Christmas. Hope you all have an enjoyable Christmas and good new year. 

  • in reply to Williamp

    That reads like really good news, have a very Happy New Year.

  • Update to immunotherapy. 

    Just had second follow up scan, and still looking good, cancer had shrunk down to virtually nothing, when having immunotherapy and is staying the same since. So glad I agreed to the trial and am still here to carry on living my life.

  • in reply to Williamp

    That is absolutely amazing. Was it squamous cell carcinoma?

  • in reply to David09

    Hi David09.

    I don't know if it was squamous cell carcinoma,  never really got to find out too much when 1st diagnosed, think the fact of being told I had cancer was enough for me at the time, and everything moved very quickly. When I was told it had spread to my lungs and was incurable I was already in hospital with an infection and feeling quite bad so again didn't ask to much then, only thing can remember is being told without treatment I was looking at 12 months. Everything else was a blur. But as I said above was offered the trial, and realised I had nothing to lose and could possibly gain some extra time with my family (which it has now at 31 months and still feeling good). Have got appointment at hospital beginning of July to find out results of last scan hopefully they are still good. 

  • in reply to Williamp

    Nevermind, what's important is that you're seeing long time results. Do you know the name of the therapy used in the trial? Those results are amazing

  • in reply to David09

    Hi David09

    It was an immunotherapy drug 30 minute infusion every 3 weeks, can't remember the name of it usual weird name for drugs, from what I was told, I was 1 of the lucky ones, as the trial was only a success on 2 patients me being 1, don't know how many were on trial. 

  • in reply to Williamp

    Thank you man. Let's hope stay NED and keep it that way. God bless you

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