Immunotherapy

Hi Theo2708,

And welcome to the group I understand the worry you must be feeling with your world being turned upside down, I actually did not experience the same as you but, I am on immunotherapy after having my left kidney and spleen removed, I was waiting to have the tumour on my right kidney taken out but, the cancer had spread to my lungs and liver, so I am on a targeted immunotherapy for the other tumours I have been on three lots now and my scan in May shows that the tumours have gone from my lungs and liver and my kidney cancer is stable, the problem with immunotherapy is everyone experience different symptoms my first treatment was infusion for six months I had no symptoms at all just a bit of hair thinning, my second therapy was tablet form I did have a sore mouth but was given mouthwash the worst for me was I lost my taste buds so I do not taste my food, I am on a targeted tablets now but still no taste, sorry this is long winded, but I am sure the other members will have different results we are a great bunch on this community all willing to help where we can, so if you have any other questions please don’t hesitate to ask take care Sandy xx

hi Sandy. I'm very grateful for your response. I sounds like the Immunotherapy is generating results for you. i hope it does in my case too. Its sounds amazing that they can target in this way. I've not seen an oncology consultant yet so I'm wondering what my prospects are? So far all i know is i have one good lung and one good kidney!  I hope your treatment continues to be stable for you. I'm happy to be part of this community and grateful for any advise and support. All the best xx

Cheers Theo2708,

You will feel so much better once you see your oncologist they will go through your treatment and plan your treatment, once they explain everything to you you will be surprised how much better you will feel good luck with your appointment Sandy

Hi.  Nov 2021 I was diagnosed with metastatic ccRCC.  57mm tumour on the kidney and small lung mets.  I started immunotherapy in Jan 2022.  Lung mets now undetectable, kidney tumour 26mm.  Because my kidney tumour has spread, the approach is immunotherapy and the kidneys left intact.  I don't get the standard side effects of sickness, bowel issues.  I've just started on a medical trial (modi-1) alongside nivolumab which has great results in mice!! 

Thanks for your update and your Blog. My situation seems very similar to yours and I hope I can get the kind of results that you are getting. I'm not looking forward to the immunotherapy but I guess this is the only choice I have. Best of luck and I look forward to reading about your journey x

Hi Theo2708,

If it's not already a trait you have, you'll need to learn patience, above all else! Not much happens quickly, or quick enough for most people. "Be prepared for the long hall".

Side effects wise, those are down to the individual, but for the most part is minimal or mostly none at all if your very lucky. Diarrhoea will probably be the most common side effect you'll notice more than anything. If your regular, you can plan around this, so it doesn't affect your day too much. When you need to go, you really need to go.

So long as there are no other medical issues apart from your diagnosis, chances are you will probably be able to continue as normal with your daily routine while on immunotherapy.

Good luck on your journey.

Andy

Thanks for your response Andy. Patience is a trait I will need to learn I guess. I'm not expecting quick results . im focused more on some kind of positive outcome. I just read about your journey, and I wish you the very best and good luck with your treatments. 

Hi Theo

I'm in a similar situation as you can't have kidney out until they've dealt with my lung mets. I've started my Immunotherapy and haven't had any nasty side effects as yet. Hoping it's doing 's stuff and I can have my kidney out eventually. Like Anddy said it all about patience, I know there's a long way to go. I wish you well with your journey.. Stay positive!

I'm amazed at you two (Flipping heck @Theo2708 ) two being advised a treatment plan of immunotherapy to remove the mets then potentially a nephrectomy.  It's different to the pathway I'm on and treatment approaches/articles I've read online.  

@Mmum 
'Started combination immunotherapy (nivolumab / ipilimumab)' 

That's exactly what will be on commencing Aug. 3 small mets in one Lung. All the MDTs at 2 locations have all targeted kidney removal. The second kidney is apparently ok ... for now.  I'm happy at 62 to get rid of the one kidney.