Immunotherapy didn’t work for me - sharing link to my Blog of my journey

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Hi all,

I haven’t posted for a while. I hope it’s allowed but I wanted to share my story of my experiences around an Acute Kidney Injury- the hanging on to hope with Pembo and Lenvatinin and how I am now recovering from a week’s long stay in Hospital Cancer Ward. I would type it all here but I find this site challenging to navigate and hard to type in Comments box. So shared here - you can either read or ignore. I have other cancer related blogs on my Wix site too . Trying to raise awareness of Metastatic Womb Cancer which no one I know had ever heard of till I got it.

Hope it helps, comforts, or at least let’s you know you’re not alone xx

I Very Nearly Died! - Playing Cancer Monopoly

Thank you 

xxx

  • Sorry to hear all this. I also had a serious immunotherapy related adverse event on Pembrolizumab. Like you, an acute kidney injury leading to nephritis. Like you I am on levothyroxine for life. Fortunately in my case the immunotherapy worked well on my cancer, but the recovery from the IRAE has been slow. I am still weaning from high dose steroids 9 months on. Wishing you all the best. 

    This is my blog community.macmillan.org.uk/.../a-trip-with-triple-negative-breast-cancer

  • Sorry to read what you went through for being brave & Thank you for sharing wishing you all the best.

  • Hi  Bev,

    I was sorry to read of all you've been through recently but I thought your blog was great. I hope you continue to improve and feel better than you did. Very best wishes for your next chemo. Hope you get good results that last longer.

    A x

    What is a Community Champion?

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    0808 808 00 00 

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  • Hi GreenCLiffLady Thanks you for the blog loads of interesting snippets and good advice . I am actually on chemo again with tumours in liver lungs neck so far and all is going well . What you said is so true about knowing your body. I had something issue with my throat I won't say a niggle pain cough or anything and got diagnosed with base of tongue cancer and got sorted , move forward about a year someone ran into the back of my van while stationary at traffic lights . Same again something not right no pain sore lumps anything or sign but rang cancer nurse and saw consultant , Who said you might not need an operation but your having one and its a big one , On a scale of 1 to 10 its an 8 . I had a neck dissection and they found cancer in my lymph nodes and two sites which they can't operate on. My point being if the guy didn't run into me I would probably be dead . Granted the cancer has spread but at least I am alive , Incurable big deal , So long as I wake up every morning that a starter and I will deal with the treatment day by day. Doesn't help having a heart attack and a stent fitted and cardio version and being told I have heart failure . I have since been told this may not be the case. I have an appointment next week as am on 11 pills a day. You know reading this you would think its all dome and gloom but its not and I feel so lucky to be even getting treatment. They told me a few times that usually they just send people home but because I am fit they have offered me treatment and so far it's working. It gives us time to focus on how lucky and blessed we are having a wonder family etc . All the Best Minmax

  • Hello Minmax

    I couldn't agree more with your attitude to your cancer! I feel exactly the same. I am amazed they even thought that treatment would help me, and having it has caused some problems....BUT it has worked, and I'm still here! I feel blessed too. And lucky to still be alive, and pretty well, on the whole, and able to enjoy my life.

    I never thought that someone could be happy and yet have incurable cancer. Who knew?

    Thank you for your post Slight smile

    Kate

  • Hi Candysmum I was chocked when I asked the consultants underling if I was brown bread after she told me my 8.5 cm tumour in my liver was cancerous along with the nodes in my lungs and also in my neck . Didnt help her saying yes but I did ask the question. I seriously think if you can get the crap out of your head and focus on say important things it makes you feel more at ease and relaxed about the situation. You know there is a lot to be said about spending time on your own which I find I am doing and loving  in a good way. Its good to face ones fears and they eventually  get weaker the more you face them. The reason some people go and sit in cafes and coffee shops so much is they can't stand to be on their own. That's not good. I also dont watch or listen to the news anymore  as its all crap anyway and I feel so happy not polluting my brain  . All the best minimax