Hello Ursula

I'm so sorry to hear about all that your husband and you have been through since his diagnosis. It's difficult to care for a loved one through treatment and I know that many of our forum members will understand the concerns that you've outlined in your post. 

Hopefully, the CT scan next week, and the Oncology review the following week, will bring some answers and reassurance. However, in the meantime, I would certainly suggest getting in touch with your husband's clinical nurse specialist if he has been allocated one. If not then you can contact NHS 111 for advice and support in managing some of the symptoms. 

If you would prefer to talk things through with one of our nurses for some advice and support you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

I do hope that things improve for you both soon. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi Ursula

I have kidney cancer that was diagnosed in 2019 - I also had the kidney removed straight away. Mine appeared in my lungs and pancreas 12 months after the removal. Then in my adrenal gland space and my abdominal lymph nodes. After the tumours started growing at a more accelerated rate I was started, in April this year, on Avelumab infusions and 2 x Axitinib tablets every day. I had my first scan after starting treatment at the end of June and I have had a really good response. My tumours have all shrunk some more than 50% smaller than the previous scan. I've also had some side effects (sore tongue, diarrhea, peeling feet) but milder, it seems, than your husband has encountered. I hope this gives you some hope that the treatment and side effects will be worth it. 

Thank you so much for your reply , it gives me Hope. Colin was going to be given avelumab by the NHS and because we have insurance we have gone private and they said he needed to go on Nivolab plus one tablet.

he has his scan Monday and results the Monday after. I hope the results are as good as yours.

could I please ask how old you are? Colin is 76.

Thank you so much for your kind words. Colin’s scan is on Monday so praying there is an improvement

Hello I'm 57 - i was 53 at diagnosis. My father is called Colin and my husband was called Colin so I will be rooting for him and yourself.

Claire xx 

Thank you so much. Oh my goodness , our daughter is called Claire. We will hopefully keep in touch with each others progress. Love to you and hopefully you continue improving and get rid of this nasty disease as I pray For you both xx

Thank you. Wow that is a coincidence. I'll look forward to hearing your news after the scan results xx

Hi Ursula

Oh that is good news . I've had a further infusion since we last spoke which went smoothly. My next scan will be the end of September. Keeping fingers crossed that we both keep on the same track with more good news. 

Claire

Hi Claire.

after the good news Monday night Colin is gradually getting worse. Our doctor told me to ring 999 yesterday and we were at the hospital for 6 hours. They put him on a drip, and took X-ray which was fine. They said his sodium blood was slightly low but put that down to not eating. He has now lost 2 stone in 7 weeks.

Having spoken to the kids we are considering changing hospitals as we feel the one he's currently at is now too far for him to travel .

He was fine before having the treatment although he has had cancer for 5 years, 

Do you find your treatment hits you like a bus? 

I don’t know what to do to help him and I love him so much it’s breaking my heart. I thought the good news would have given him a big lift.he just wants to sleep all day.

hope you are feeling good, sorry to offload xx ️