Read my updated profile!

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  • 25 subscribers

Hi Everyone

I've just updated my profile with my latest news. I didn't want to post it on my 'home' forum of  kidney cancer, as several 'new' people are asking for info on there at the moment about immunotherapy. I don't want my experience to scare them off! I know plenty of people in this forum will be able to relate to my recent news in my profile.

I'm really feeling OK, and happy with my decision to discontinue my treatment. Life is good...or as good as it can be! Hope you're all keeping on keeping on...


  • Hi have read your profile.

    I am sure you are happy with your decision ,  that is the main thing, and i understand, how you came to it.

    It is something, that could come to any one of us, at any time, and i would hope, i could make that decision, and except  it, the way you have done .with grace and dignity.

    Glad you are well and long may it continue. 

  • Hiya Candysmum

    The most important thing here is that you are happy with the decision you've made, after all you are in control so it's your choice. You are very brave and I lend you my support on making this choice. I hope you continue to to have a good life and make many happy memories and keep on living your best life.

    Sending you a massive hug

    Donna xxx

  • Hi  

    I'm sorry to hear that the time has come to discontinue treatment. However, I respect your decision and I understand that only you can know what is best for you and your body. I've heard it said that the person will know when it's time to stop. It's just a shame that there aren't other treatment options for you. But a lot of us in the group will get to this point, myself included. I'm pleased that you are currently well and I hope it continues.

    A x

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  • A well articulated point in a very positive way.  

    I would add that my oncologist frequently mentions treatment available as long as I am happy with it, or I can stop at any time.   

  • Hi Candysmum, I have read the posts and your updated profile, sorry I haven't managed to reply before now.

    All I wanted to say was, take nothing for granted! I had to stop treatment. (a Trial) due to the horrendous side effects, even although it was working for me. After chatting to my amazing oncologist we decided I would stop treatment. She told me we would watch and wait and if the incurable Malignant Melanoma returned, we would deal with it then. I stopped treatment in October 2016 after three and a half years. No one, especially my oncologist and I can believe I'm still here. Just take each day as the gift it is and I do hope you will be here for a long time to come!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Candysmums, it's upsetting to read your profile, but you are totally right with your decision, treatment is only of value if it can improve and extend your life, you have taken the decision I wilTwo heartstake when my time comes, very big hugs. Two heartsTwo heartsTwo heartsTwo hearts

  • Thanks Ulls, and to all of you who have responded to my post.

    I was in an impossible position a few days ago, but now feel relieved that I have made my decision. Unfortunately, roughly 5 in 100 people react very badly to high doses of steroids, and I knew I might be one of them before I started treatment with the immunotherapy. This is due to my family's medical history, not mine.

    Actually, it doesn't matter which treatment I was on, as all cancer treatments can have side effects, and most of those are treated by using steroids. I know many of the people on here will have used steroids at some point during their treatments.

    So swapping to a different drug wouldn't remove the risk to me of having to face high doses of steroids again. Even if new drugs are in the pipeline for cancer treatments, the use of steroids is always going to be the 'go to' treatment for any side effects. It can be a very effective treatment!

    I believe I will have a better quality of life by going down the no-treatment pathway. It may be shorter, but I have had a year of immunotherapy, which has damped down my cancer, so this has bought me more time.

    I know my decision isn't the one that most people would choose, but I thank everyone who has replied to me with empathy, understanding and love.

    You are all the Incredibles!!


  • Hey!  A year of immunotherapy is pretty good going.  I don't think you are far off the full benefits with a shift that long.

  • Hiya Kate

    I must say I find your post on this forum very comforting and I must praise you for making the decision you have made, you really are an inspiring person. Food luck with the future I hope it's all you want it to be and please if you can continue to post on the forum you really need to know how much comfort your words bring to us.

    Have a lovely weekend 

    Hugs Donna

  • I have just read your profile. Well done on making your brave and difficult decision. It is about what you feel is right for you. Nobody knows this better than yourself. You have been through so much. I am glad you are well - long may it continue. Xx