My husband has kidney cancer

Hello there, I am so sorry that you are going through this horrible time . I was diagnosed with kidney cancer in 2016 and like your husband I had no symptoms and felt very healthy until I found blood in my urine. I had my kidney removed and was told it was extremely aggressive. I did later on get mets in my lungs which were successfully removed. 
This is still very new to you both and it is hard to get your head around it. Your idea of keeping a journal is great I found it very useful, I would just let rip about my feelings and thoughts, swear words and all!!! 

 I don’t know if you have a Maggies centre near you. I’m lucky to have one in my home town. Cancer patients and their families are welcomed there. It would be great for you to go and discuss how you are feeling.

There are so many great treatments out there for kidney cancer and new ones coming through.

keep talking on the forum, look through all the different chats. It really does help.

Easy to say I know but keep strong, sending love and best wishes XX

Sorry to read your news.  

How old are your kids?  Mine are 17 and 20.  Concern for my kids not having a mum in a few years time was certainly my first worry, and the the trigger for the tears at first.  I've not cried about it for some time now so I would say it does get easier as time goes on.    I was diagnosed in Nov 2021.  

Hi. Our kids are 15 and 24. The 24 year old is so mature about it all and surprised us how he took charge. Our youngest isnt saying anything and really quiet. Have spoken to his form teacher in sixth form and they keeping an eye on him as dont want him suffering inside and saying nothing. It is so hard isnt it. Just at christies now waiting to see consultant to get results of recent scan before he starts trial next week.  Hand are shaking and husband so worried but trying to keep as positive as possible.  So sorry to hear u are going through all this also. Keep strong as i am sure everyone is constantly telling u that 

Hi. Thanks so much for your reply.  Yes feel like we are still coming to terms with it as had so many plans made and just feel like they all taken away at the moment.  Yes there is a maggies centre next door to christies here so we will definitely be going in as so many people have recommended it and will do the journal and yes may be a few swear words too lol just at christies now as had scan last week so getting results today before he starts trial next week so really stressed today but keeping positive.  Thanks so much for your wishes and hope u do are doing ok and sending wishes to u xx

What immunotherapy trial is it?  Is it Pembrolizumab/lenvatinib (short trial name = sub study 03a phase 1b/2 umbrella study of combination therapies in RCC)?

I almost went on this.  Really interesting study but in the end went for the nivolumab/ipilimumab combination.  

Hi. It is immunotherapy trial but phase 3 of what u had and he wont know what he is getting so it will be either 2 drugs or 1  drug and a water solution or 2 water solutions.  It will be every 2 weeks for 6 months and because he has a 50/50 chance it will come back due to his grade and he is a worrier so doing the trial and been checked every 2 weeks and under Christies care for 10 years is like a comfort blanket for him. Hope u are doing ok . How did u get on with the trial and are u doing ok if u dont mind me asking. 

Hello

sorry to hear about your husbands diagnosis. Sounds the same as mine (seeing blood after a run). I had the kidney removed in 2018, then some radiotherapy on some lymph nodes and had some spread to lungs. I have been on the Avelumab (immunotherapy) Atixinib (chemotherapy) combination therapy (had cycle 63 last week) for over 2 years.  The tumours have all reduced or disappeared so I can say it’s been a great success so far.  This treatment started as a trial but is now available on NHS. Might be worth discussing with Macmillan nurse if you are worried about being on a trial. 

I'm doing great thank you.  I'm a Big Fan of these combo immuno drugs!  A bit of a rash, intermittently is a side effect.  But, it seems to have fixed a lot of the cancer symptoms.  I have an appetite again, the weight loss is reversing, I feel normal again, not sweating in bed at night and significantly less tiredness and falling asleep on the sofa.   I had my first checkup scan at the weekend and I'll find out the story on 29th, although it may be "jury's still out" as first scans are notoriously ambiguous - tumors frequently show pseudo growth as they expand as the drugs embed and start to take effect. 

Hi. Lovely to hear from you. So glad to hear that your treatment has been working for u which is great although i am sure it has been tough but lovely to hear when things work. My husband is starting his trial tomorrow as been at christies this afternoon just to go through everything again and final tests and he has spoken to mcmillan nurses and Counsellors so it ready to get going but obviously nervous. Its the unknown isnt it. Hope u keep well and things continue to go well for u. Best wishes and always here to chat. 

Hi. My husband starts the trial tomorrow so we will see how he gets on and hopefully not too many side effects. I hope all goes well for you on the 29th and all is good news for u. Great to hear that it has helped alot of your cancer symptoms and nice to feel some normality again and not be so tired all the time etc. Take care and best wishes.