New to this

hi daisy 

I too am new to the forum,ive been on a similar journey as you if you care to look  up my profile.

its tough going but all we can do is battle on and i just hope i haven't messed up this message and you receive it (not too clever with websites) i wish you well and if you want to chat  no problem.

andy

Hi Andy 

thanks for your reply. You cannot be worse than me on this site,it’s taken me ages to navigate back here! I did click on your profile, blimey you have been on a rough journey! Mine is very simple by comparison. Hope you are feeling well on your treatment. Scan for me tomorrow- I’ve had so many now I don’t get “scanxiety “ may be a different story when I see Proff on 1st Feb!! I’ll update on here then.

wishing you all the very best

daisy

congrats on navigating your way through.

scanxiety is a brilliant word, especially in my case as what i didn't say was i cannot cope with scans in any shape or form.

i have to get general anesthetic to go through the process which causes a ton of paperwork for my consultant .

i do well on on the avumalab with only minor side effects ,nothing to worry about at at all.i wish you well for your scan tomorrow ,its treatment day for me ...yay...have a good weekend.

andy 

I have been on nivo since July 2021 just had my 7th monthly infusion. I have been lucky and have had no side effects at all and my scan in December showed shrinkage in all my mets. I consider myself to be very lucky and I wish the same for you.

Hi ellikate,really good news on your progress  and also the fact that you haven't had any side effects. I feel everyone is different when it comes to them and if you look on the advice of paracetamol, stheres a list as long as your arm of side effects pot luck suppose  ...I hope you continue to get  great results. 

Andy

Quote: "I’ve been warned that the cancer will probably be larger at this scan."

Is that because when the drug starts to work it embeds in the tumour so it looks like pseudo growth, but the treatment is probably working?  Then on subsequent scans you see the shrinkage?  I read that somewhere. 

I'm starting on ipilimumab  and nivolumab combination immunotherapy on Tuesday.  Can't wait!  

Thanks for the replies everyone. I don’t understand the science behind it being bigger at first scan. I tend to stay off the internet and leave the research into renal cell cancer and treatments to my sister who tells me all the relevant bits

Mmum- I hope you combined immunotherapy treatment goes well, keep us informed please.

Elliekate- great to hear that the Nivo- I’m calling it that from now on- is doing the business. It gives me a lot of hope!