Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Metastasis of kidney cancer

Jedijeep
Posted by

can anyone who has experienced or is experiencing the following. I had a radical nephrectomy 3 yrs ago , the cancer spread the following year to the base of the kidney removal and had invaded the spine. I have been on Pazopanib for 2 years since spread and now recent CT shows spread to 10th rib cage area. An MRI is scheduled to confirm. Appointment made for Oncologist also .  

What is the next line of drugs? Immunotherapy ? Have you been advanced to please .. very very frightening. Can anyone help please ? 

Jo300
Posted by

Hi Jedejeep

Also on Pazopanib for two years, met in my breastbone and currently having my liver monitored for a possible spread.

My second line will be Axitinib, I think this is quite standard - Nivolumab (immunotherapy) is third line in the UK at the moment.

Wishing you all the best x

Jo
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Jedijeep
Posted by

Thank you so much for your speedy reply.. I wish you the best on your “journey” also .,

merry Xmas 

Jedijeep
Posted by

I am wondering if GRAGON IS still on this blog site? Does anyone know how I could Direct a query to him:her? 

Or 

has anyONE with advanced RCC started on immunotherapy drug ( via intravenous) ? 

I’d be so grateful for some answers 

thank you 

Gragon
Posted by

Hi ,

Yes, I'm still about and visit the site most days. If you want to let someone know you want to talk to them you can "tag" then in a post.  If you type the @ symbol followed by their user name it will appear in a box on your screen.  Click on the box and the @ symbol will disappear and the username, where you have typed it, will appear to be in a faint box.  When you post the person will receive a notification that they have been mentioned in a post.  You should receive one as I tagged you in this post.

Alternatively if you click on the persons username you will go to their profile.  Under their name is a button marked "add friend".  If you click on this they will receive a friend request.  If they accept this they can then exchange private messages which can be accessed via the site but also appear in their e mail feed.

I am happy to try and answer any questions you might have but I might be of limited assistance at the moment.  I am at still on my first line treatment of Pazopanib and although it seems to me that it is not acting as effectively as it was when I first started on it, it is still working so at this stage I have yet to look at what treatment might be used after this does eventually fail.

I have seen different treatments offered.  It used to be that a further biological therapy was used but I have heard of immunotherapy drugs being offered more recently.  A friend of mine was recently invited onto the Prism trial which I understand involves two immunotherapy drugs used in combination.  I think things have moved so quickly that I am not sure any previous guidelines will be relevant anymore.  It appears to differ depending upon where you are and would be decided after consultation with your consultant.  You should be involved in this decision not least because it is your body.  You cannot decide what treatment you will receive but you can influence this choice.

As I understand it bone mets tend to be treated with radiation.  I know that this is done to reduce any pain and believe that it might also be applied to prevent the met from growing further.  I also know that some people are prescribed "denosumab" as a targeted therapy drug and also to assist in strengthening the bone.  I don't know why radiation is used on bone mets when it is not effective on RCC?

I'm more than happy to try and assist with any other queries but you might want to try posting it in the Ask an expert section.  If you look at the top of this page the button is just below where it says Online Community in green.  There is an ask a nurse section where they may be able to offer some advice.

Definitely a "him" by the way, I thought the beard on my profile picture gave it away but bonus points to you for not making a judgement based on how someone looks.

I will send you a friend request.  If you look at where your username is and click on the silhouettes of the two people you will see a line which says "requests to review", click on that, accept the request and you can contact me directly if you want.

I look forward to talking to you soon,

Gragon x

Jo300
Posted by

Hi Jedijeep

I can't help further with any immunology questions as also still on Pazopanib as my liver query turned out not to be a met.

Just wanted to say that I wish you all the luck with it. I wish it was offered as an earlier stage treatment as I'm really keen to see if it could make a difference, but I know I have to wait ad in theory I also know that is actually that's a blessing.

seems we are at similar stages. I'm really interested to hear about the immunology trials as I've specifically told my consultant I'm interested in anything around this area.

I was offered radiation for my tumour (breastbone) but it was purely to relieve the pain when I was first diagnosed. As it happened it subsided very quickly once I was on Pazopanib and I didn't need it. I was told that it wouldn't actually do anything to destroy the met. I have a monthly Zomita infusion for bone strengthening.

Keep well all

Jo

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Jo
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