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 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

Morning - it's good that they have mainly stayed the same, and although it is disheartening that the one in the thorax grew, hopefully, they will be able to target that one with the radiotherapy and stop it in it's tracks.

I am on Avelumab - Immunotherapy (infusions every 4 weeks) and Axitinib - Targeted Therapy (2 tablets morning and night). So far, as side effects go, I could be so much worse than I am, so I'm thankful for that.

Much love

Claire xx