Secondary kidney cancer

Just wanted to say best of luck for tomorrow, could fortivida be an option (Tivozanib) rather than pazopanib maybe? X 

Hi ,

Just wondering if the oncologist came up with a plan as promised?

All the best,

Gragon

Hi Gragon, unfortunately they moved my appointment on one week to consult with neurosurgeon at St George's tooting. Went to see them yesterday they are going to fuse and cement my spine. Whilst it help wth  the pain,,they say it wont affect the tumour. As mr Tesco says every little bit helps 

Hi Eddy

I have one met on my spine and this was causing increasing pain in my right hip. At the time I had just come off Sutent and was about to start on opdivo.

I also had radiotherapy.

The onc was worried about the met on my spine and suggested an operation.

The surgeon would remove as much of the met as possible and insert a titanium cage and various screws.

I had 3 or 4 treatments with the opdivo and was told it would still be active in my body six months after the last infusion.

The last letter I had from the Onc suggested a reduction in the primary tumor and signs of necrosis.

Read my profile about the previous 8 years.

The operation.

I assume the operation in 10/18  was successful BUT  I caught menangitis. I am today in constant pain. The morphine I take daily helps. I also take twenty other tablets a day. I don't know if this condition will be forever or is just slow healing ay my age 68

Would I have the spinal operation again?

Yes I would.

Good luck

Hi guys 

I have mets on my spine and start Sutent next week. Are you guys still active here?

Alastair

Hi ,

there are certainly plenty of people here and ready to support you if we can help at all.

I was diagnosed with mets 18 months after having my kidney removed, in my case they are in the abdominal cavity with some very small ones in my lungs.  I'm on Pazopanib / Votrient, which is similar to Stutent, and have been so for five years now.

Don't be scared by the list of side effects, everyone seems to get a few but no one gets them all.  You will be closely monitored to start with to see how your blood pressure and blood chemistry respond.  One thing that you can almost guarantee is a future with pure white hair.  I quite like it myself but some are not so keen.

If you do get side effects then let your team know but you can also call in here.  People have developed lots of ways of dealing with the different side effects.

Wishing you all the best and I look forward to talking to you again.

Gragon.

Thank you Gragon. Your experience gives me hope. I start Sutent on Monday. I’m getting married in April and had booked honeymoon in Dubai just before my nets showed up. Sincerely hope i can make it!

Hi Alistair

Like Gragon I’m on Pazopanib. My main met is in my clavicle. Ive been on it just over three years. 

congratulations on you forthcoming wedding! I got married in 2018, and had. A treatment break just before the wedding and the start of our honeymoon   We went to the Caribbean and I was totally fine. Will keep fingers crossed you have the same luck too!

That’s very encouraging to know you were able to do that Jo. Do you know of people with bone secondaries who have continued to respond well to drug therapy for many years?

I don't know how many people here have bones mets and I haven't met anyone personally. What I've been told my my oncologist (and I know other people here have been told the same thing) is that kidney cancer is a slow grower and bone makes it harder to progress than soft tissue, so in reality bone mets should be a bit slower still. When I started on Pazopanib it had only been approved for 5 years and people had been on it for that length of time successfully and still going strong now - so that's 8 years.

Alistair one thing I forgot to mention and it's definitely worth asking about if it hasn't already been suggested is that I get a Zometa (zoledronic acid) infusion every 4 weeks. It's made a massive difference to my pain, massive - when I was first diagnosed I was basically walking round with the pain of a broken collar bone - now I have none most days. I've also read a study recently that would indicate that it has a positive correlation to life expectancy.

One thing I would say is with the advent of our new drugs, traditional mean survival times are seeming to be significantly increased. Rightly or wrongly I now take those statistics with a pinch of salt.