Hello guys.

Hi MuttleyBC and a very warm welcome to the online community

I'm not a member of this group but was passing and just wanted to say hello. I hope you'll find the group an informative and supportive place and if you have any questions I'm sure the other members will do their best to answer them based on their own experiences.

You might also like to join the secondary lung cancer group and, if this is something that you'd like to do, clicking on the link I've created will take you straight there where you can join and post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

x

Hi - Same!  ccRCC here and cycle 2 of Nivo/ipi immunotherapy tomorrow.   There's lots of friendly people, new terminology and support here.    

One thing we all agree on is the waiting - we hate the waiting game, the uncertainty waiting for critical appointments or for ways forward.

Any questions, ask away.  Claire xx  

Hi. I’m feeling very confused. After a number of ct scans and blood tests, last one New Year’s Eve, they now tell me everything has stopped growing. That’s the puzzle - I’ve never heard of cancer stopping - after or with treatment, yes it goes into remission - but stopping? Is this possible? Is it likely? Is it real? And how long will that last? 
Like some others are saying, it’s the waiting that gets you. And waiting for something unknown! I’m constantly tired, and never sure if this is just a stress reaction, or what? Over the last few months I’ve realised I’m being increasingly aware of my body and what’s happening to or in it. Subtle changes, intermittent runs, headaches, not sleeping well, all take their toll. But for them to tell me ‘go, get on with your life’ just seems difficult to comprehend. Of course, with various stories going around about nhs limiting treatment for the older members, and this convid thing, everything is getting to me. I feel as though I’ve been out on the back burner, and nothing is happening, just waiting for the coffin. 

Hi MuttleyBC

That's great news that your cancer has stopped growing. I don't know anything about kidney cancer but I know that melanoma, the type of cancer I was diagnosed with, can stop growing/spreading in response to immunotherapy.

I can see that you've posted about this in the ask a nurse section of the online community and the nurse that responded said:

"You ask if it is credible, likely that your tumours have stopped growing, or can be stable as your kidney cancer appears to be at this stage. This does and can happen even without treatment. In this situation your team would want to continue to monitor not only your tumour size but your symptoms as well.

Let's look for many more years of being stable