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Kidney cancer

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

state of shock ......

StephenJ
Posted by

I thought I had beaten it and it's now returned....kidney removed a year ago and now a secondary spread, just started immunotherapy, I don't know whether I should be happy its been detected or would blissful ignorance have been better....according to Dr Google even if successful, immunotherapy will only give me a few more months, am I wrong? what if its unsuccessful? any thoughts appreciated.

Gragon
Posted by

Hi ,

Sorry that you have had to join us but you are very welcome.

In this situation Dr Google is not your friend.  Immunotherapy has only been available for use in the UK for a few years now so any statistics to date are only the result of short term studies.  Some of the combinations that they are trying now are even more recent.

I am on a biological therapy, a tyrosine kinase inhibitor and I started my treatment over five years ago.  My treatment has been successful to date but immunotherapy now seems to be as popular a choice and more so for certain areas.  I doubt that this is due to cost but is more likely to be because they believe it to be more suitable.  As such I would be hoping for years and possibly decades not months.  If the treatment suits you then it can continue indefinately.  If it does not work or if the side effects are too limiting then there are several immunotherapy drugs to try as well as the biological therapies.

There are a number of discussions about different treatments in this group and if you click on "discussions" at the top of the page you can see if yours is mentioned.  If not if you put the name in the search in group box it will find any references.  This would help you to find out what other members are experiencing and any tips that they might have for coping.

There are quite a few of us who have gone through this experience and it is difficult to see much of a future to start with but you should be able to do pretty much as you have been doing to date.  I drive, go on holiday abroad (when out of lock down) and although I am now retired this was not just because of the cancer and I worked full time for a few years after the cancer had spread.

Wishing you all the best with your treatment and please let us know how you get on.

Gragon

buttercup01
Posted by

Hi , like I've been on a tki for several years - Pazopanib since 2013, with a treatment break 2016 to 2019. So many drugs have indeed been developed since.

I too took early retirement but not due to the cancer n also worked full time up till then, driving to work etc.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
StephenJ
Posted by

Many thanks Gragon, that is very reassuring, wishing you the best too

StephenJ
Posted by

Many thanks buttercup, I am moving from terrified to numb which must be a good sign and your post is a great help

Ian436
Posted by

Stephen, I am going to see oncologist this afternoon as my kidney cancer, which I thought was cured 5 years ago has reappeared in my pancreas. What immunotherapy have yo been offered and can you tell me where yours had spread to ?

Ian436
StephenJ
Posted by

Hi Ian,

Pancreas and lung, quite small, Ipilimumab and Nivolumab.

I'm at Christie's.

Let me know how you get on.

S

Ian436
Posted by

Hi Stephen, a strange consult with oncologist at Beatson today. I am to have another ct scan and if there is no change it will be just monitor for time being. If not immunotherapy plus a tablet, or tablet only. The immunotherapy side effects sound pretty bad. Take the drug for 3 months but side effects could stay for ever. She was pushing pazonibib I asked about Tivozanib but was told that is usually given to frailer patients who can’t cope with Paz. The results are the same but to me it sounds like Tivozanib is milder. I asked if I could have that, she told me no one had ever asked before she would have to ask her boss ! I also asked about taking cbd oil for anxiety, as I find it does work. She told me cannabis does affect chemo but she would have to ask about cbd. I asked about diet, alcohol etc, and was told balanced diet, and not to go mental with drink. Everything up in the air until my next ct scan, on the plus side my blood pressure and heart were good. 

Ian436
StephenJ
Posted by

Well Ian at least it is being looked at, I am impressed with your knowledge of the medication.

I am simply relying on my oncol at the moment in terms of what I am prescribed as I am in no place at this stage to question or analyse anything. I am too terrified as I stupidly thought this was sorted. I am taking a punt on side effects.

Good news on bloods and heart.

I am having therapy which I am finding a great help.

Do you have support? My wife is devastated but trying to hide it.

S

Ian436
Posted by

Stephen, support from family and friends. I had no knowledge of this at all until a couple of weeks ago. All has come from buttercup, Gragon, jo, Sue, ormebeau, and cyclingmadman, on this group. I’ve had a look on google but when you look at the posts a lot of them are years old, so well out of date. Some have lived with kidney cancer for over 20 years, so I think we have to be positive even though that is very difficult. The only thing that worries me are the possible side effects. As long as I can keep them manageable and I can lead a normal life that will do for me. I’m nearly 63, I was going to retire next year,  but might be sooner now.  As for tonight I am going to have a large dram of superb Benriach cask strength whisky. 

Ian

Ian436
StephenJ
Posted by

haha that's the spirit Ian, I have had a cheeky red, I have stopped Dr Google......yup I'll take 20 years, its nice that people are so helpful, I have heard from a couple of them, side effects I suppose it's a case of see what happens, and change stuff if necessary

Ian436
Posted by

Cheers Stephen, keep in touch and we will try and keep other going.

Ian

Ian436
StephenJ
Posted by

Indeed Ian

S

buttercup01
Posted by

At least you have ,each other to compare notes ,withn

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.