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.

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, got great news Claire. All the cancers are reducing…they are changing his sickness tablets and anxiety tablets to help but to be honest think the news will give him the biggest boost. Starts the immunotherapy again Thursday . 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 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 ️

Hi Ursula

I am really sorry to hear this. Don't apologise for offloading - we all need to sometimes.

The side effects I've been having from the treatments I've been lucky and tolerated well so far.

I do know how frustrating it is to not be able to help him and not knowing what to do for the best. I lost my partner Colin in 2021. The doctors weren't taking his condition seriously enough (due to covid - which he didn't have - and them only treating him via telephone appointments) he had bilateral heart failure and finally a major stroke. Also I am currently looking after my father (Colin) and he's 86. His health is failing and no matter what he or I do nothing seems to work. It is very frustrating. 

I hope the doctors manage to stabilise him and maybe change the dosages or the treatment to regulate or change the side effects.

Claire x

Aww Claire I am so sorry about Your hubby and your father. I have been having trouble getting an appointment with our doctor who we have been with for over 40 years. You have a lot to deal with , bet your father is so proud.

the hospital have just rung and said they can’t give him any more treatment while he is feeling like this and they think he has gone into a deep depression. My appointment with our local doctor I have finally got for tomorrow after did a sit in last Wednesday. Yes a sit In .Refusing to leave till I got an appointment. … 

so I can have a chat to see the way forward. The hospital we're currently at have said would it be easier if you found somewhere more local.

will keep you updated. Where do you live Claire if you don’t mind me asking? Xx sending all my love. Ursula xx

Hi Ursula

I'm sorry to hear about the problems getting an appointment. I live in West Yorkshire and I have my treatments in Leeds at a teaching Hospital. Where are you based? How far away is the hospital? 

Claire x

Hi Ursula - I was wondering how Colin is and how you are?

I'm still having the treatment. My next infusion is on Saturday 2nd Nov. Having some different side effects along with the original ones but still not too bad. They have discovered a second cancer, totally unrelated ?? A raren indolent, type of Non-Hodgkins Hodkins Lymphoma. 

I had a scan on the 9th Oct and getting the results on Tuesday - nervous.

C x

Hi I am so sorry Claire I missed your  message two months ago, I didn’t get a nudge to say you had written.

Colin was so so poorly on his infusion and has taken a break for 2 months. The good news in that the cancers reduced and he has new bone growth on his spine. We decided Derby was too far for him to travel so we are now going to Sheffield. We live in Worksop, so half an hour away.
Colin had his CT scan a couple of weeks ago and gets his results Thursday so I pray for both of you, same week results.
he will then most likely go back on to the immunotherapy. Our new consultant reckons it was the daily cancer  tablet that made him so ill so we will see. He had lost two stone but the break has done him good and he is at least going out now and wanting to socialise. He has put 10 pounds on so I know you are nervous but be strong my love. Please keep in touch. Lots of love Ursula  

Hope you are ok

Have you had your Ct results yet? Hope they are good luvvy xx

Hi Ursula - Yes I had my CT Scan results on Tuesday and it's all good more shrinkage in all the tumours. So we’re keeping going with the immunotherapy. They have reduced my bloods to every 8 weeks instead of every 4 weeks, so less visits to Leeds. I had my 8th infusion on Saturday and all went well. How did Colin's CT results go?

Oh I am so so pleased for you Claire. Colin has not had his immunotherapy since 27 th July and it’s done him good to have a break he was so so ill and had lost 2 stone. He has now put 9 pounds on and his c.t. Shows that all have stayed the same except one which is on his thorax. The new oncologist we are seeing in Thornbury think it’s the daily cancer tablet they were giving him in Derby that made him so ill. At least some of them reduced last time. So upset that the thorax one has increased. They might zap some radiotherapy on it as it is in a tight space so hasn’t got much room to grow more! 

He wants him to have another scan at beginning of January and we will get results on 16th. Then they will make a decision what way to go after that. 

He has given him the o.k. to go to Barbados on Tuesday with our son to watch the cricket. I think that now he is feeling good it will do him the world of good.

which immunotherapy are you on is it Nivolab? and are you on tablets as well

Sending you all our love.

Ursula and Colin xx