Kidney cell carcinoma

Hi there, I hope you'll find us a friendly bunch.  I note you tried tivozanib.  I'm on ipi/nivo since diagnosis started Jan 22.  RCC under control but I've experienced a stage 3 immune related adverse event with kidney function (oh the irony) dipping into the amber zone.  My ears pricked up on tivo because that's a TKI my oncologist has on the radar if we need to stop ipi/nivo.  It's supposed to be good for people who experience immune reactions.   My kids are 18 and 21.  I must agree that it was a totally different experience telling my kids than others, but they were very mature about it.  "We know about cancer, mum.  We've seen it in films" they said lol.  And "is your hair going to fall out?". 

Hi, thanks for replying Mmum,

Great to hear from you, my youngest was 13 when I told them and she just cried for hours afterwards.

I've also noticed that some extended family and friends don't mention the C (cancer) word in front of me where as others will tell me of people they know who have cancer and go into great detail about it!

Hi,

I was diagnosed with Stage 4 renal cancer in April.  Spread to lymph and lung.

I am a single parent.   My husband died when my girls were much younger.

I am finding the toll on me huge.  It is really affecting my mental health.

If anyone has ideas of supportive organisations , please let me know

Joan

Hi Joan, sorry to meet you here.  I was diagnosed on Nov 2021 so I'm a bit ahead of you.  I feel for your predicament.  Maggies do some support groups in some areas and Macmillan have some local units.  However, they do seem to be hidden in my area.  I saw a poster of "groups on " recently at the hospital but it was out-of-date and I'd never seen it before.   

Kidney Cancer UK <kcuk dot org dot uk> (external links are sometimes removed by moderation) have support groups and employ specialist nurses in each Region.  I connected with them in Feb (my region covers the whole of Scotland) and had a zoom chat with 4 people.  It was fab.  Details on the website.  I joined the mailing list, and I think I responded saying I wanted to join a local coffee chat group and the nurse then added me to the distribution list. 

I haven't managed to make any buddies at the hospital during infusions.  It's a different lot of people every week, although I sometimes recognise people,  we haven't really struck up long conversations unfortunately.  If you go for infusions regularly, or have regular meetings with your oncologist, or have a specialist oncology helpline, I'd ask these people for support groups.  

Whereabouts are you based?  I'm in Fife and I'm at the Western, Edinburgh.  

Hi, Jackie, I contacted  Macmillan after my diagnosis about my mental health. They referred me to a very nice lady who has been actively talking with me through some of my issues. This service was with BUPA, and before you panic, as I did, the service was paid for through  Macmillan.

Hi,

Thank you both.  I have been working up til now......a bit of denial i think so haven't really followed up on things. 

Its something that i am going to do.

Xx