Hello , I’ve plucked up the courage at last!

  • 6 replies
  • 14 subscribers
  • 1931 views

Hi there,

It’s taken me ages to pluck up the courage to actually access this forum and you lovely people.

 I had a radical nephrectomy in Oct 2019 with regular CT ‘s.  I have had back pain for a long while due to a back injury but over the summer it flared up  again but in a different way , more like sciatica. My routine CT in October showed that I have a metastasis / lytic lesion in the soft tissue of the left ischium and my hip .

I have a plan which I am starting soon .  I will have a course of radiotherapy along with immunotherapy   Avelumab, Axitinib, and Denosumab . I have appointments for taking blood ready for starting the Immunotherapy and for discussing starting  radiotherapy so hopefully we can get going.

 I will be taking the Avelumab By IV every two weeks probably for a couple of years , they have given me info about the drugs used. Other than that it is another new journey into unknown territories that are so very very scary for both myself and my lovely hubby.      

 I am also in pain where the metastasise is inflaming my sciatic nerve, the consultant has prescribed Pregamblin and also 2mg of Dexamethazone,  whilst the Pregamblin gets working ……it’s very very painful and I feel the steroids aren’t working but I don’t want to increase the dose due to the possibility of weight gain. I am talking to my GP later so she might be able to suggest something.

 My doctors / consultants are Mr Man at Nottingham City hospital, Dr Rau  oncologist at Kingsmill hospital Mansfied and Nottingham city hospital and Dr Syndar for radiotherapy.   This is so scary as I cared for both of my parents through to the end of their cancer journeys and now it’s my turn ……. It I can and will do this.

My vision is that the radiotherapy will give the cancer cell a bit if a shock and the immunotherapy will turn my my good cells into ninja pack men which will go into search and destroy mode ….

Thank you just writing that down to you has helped process my thoughts. 

Has anyone else had these treatments?

 

  • Hi and a very warm welcome to the online community

    I haven't had the treatments you're asking about, as I had a different type of cancer, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be more easily spotted.

    I typed axitinib, avelumab and denosumab individually into the group search bar to see if I could find any previous posts mentioning these drugs. I was unsuccessful for the first two drugs but found these posts about denosumab which you might want to have a look through.

    However, I noticed quite a few people mentioning axitinib and avelumab in the kidney cancer group so you might want to take a look/post in that group too.

    It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Thank you so much for the warm welcome. I have found my profile and will now update it, and thank you I will appreciate have a look at yours.  After 2 years you would think I would have been on this site , well I have, but only to take a peak through my fingers.  However I have now plucked up the courage  ow it’s a big relief to read others stories and know there are others in the same or similar boat. 
    many thanks xx

  • I think I 'lurked' for a few months before actually joining in. I'm sure you'll find everyone very friendly and helpful. The kidney cancer group is a more active one than this one and I'm sure you'll find people over there who will be happy to share their experiences with you.

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Yes, I have bobbed in and out reading but not dared read, looking but not dared to look properly, scared of things I don’t want to know.  I have now I have got my head around things I will go back to the Kidney Cancer Groupand the Kidney Cancer Support Network,.  Before I had the hope that my cancer had gone with the operation but some cells escaped, took up residence in my back and hip so it’s got really scary now. But need to be positive and follow through the treatment plan keeping my brave girl pants on making sure the elastic is tight! :) 

  • You can't beat a pair of big girl knickers when the going gets tough!

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"