Hello!! Needing anyone whose on immunotherapy?

Hello Bellap44. I have kidney cancer too, spread to lungs etc etc. I have pembromizulab immunotherapy every 6 weeks but haven't so far had noticeable side effects from it. Do the pain and cramps occur straight after? Is he on pills too? Does he have access to a cancer nurse - I have phone numbers for mine and can speak to the kidney cancer ward when the 2 part time nurses aren't available. We also have a Macmillan nurse (again part-time but can leave a message) who is good to be a go-between. I hope there is help available for you and keeping fingers crossed that the immunotherapy is working...

Chillamum thank you,. That helps, he is on Atezolizumab,I have read about the different drugs before, I think they target different types of cancer or where it is. 

It's mostly at night when he gets pain and cramp, I think when you are lying down,it's worse.

I am calling oncologist secretary quite a lot and to be honest she is fabulous! We have only just had an allocated Mcmillan nurse,, I have emailed and called and she calls my partner back, he won't complain about any thing as he's worried they will stop the treatment.

I'm glad you seem to be doing well on the immunotherapy and its good to listen to another person's experience. Thank you.  

Hi Bellap44. It sounds like it's just been a slow start to get support which is what happened with me - there seems to be a gap at the start of it all then it comes together. I always seem to need help only on a Friday and can't get anyone til Monday or Tuesday so have had few scary weekends! So I am not going to wait if I have any concerns as they only get worse... I recommend keeping a diary right from the start so you can present a list of facts which would maybe carry more weight than just a description. I also found useful info about my mab on the manufacturer's website. Hope it all begins to show good results! Best wishes

Thanks

Hi how are you doing now with your immunotherapy? Hope everything is good  fir you ? 

My husband is very up and down and has recently had another scan to check on things. Mcmillan nurse came last week and said she is recommending  co codamol for the pain and also a change to a newishiquid drug   she took him off the morphine.  

Hope you are OK,  best wishes xx

Hi Bellap44

Unfortunately my immunotherapy/Axitinib wasn't working so that's stopped. I'm not happy losing the immunotherapy though. I felt it protected me in other ways too. I now am on a 2nd line treatment of 2 other drugs-4 weeks now. Just spent the evening in a&e with a very sore abdomen/tummy which has been iff and on for 3 weeks. I had a flu jab which has been really painful for 3 weeks now too and I wonder if I'm just tied in knots with that pain. We don't have an out of hours gp so it means going to the a&e annoyingly. I do feel GPs tend to see you have stage 4 cancer and give up. Waste of time!

How is hubby doing? I have cocodamol and morphine as a backup but I don't usually have any pain-just this flu jab and nothing helps that. I hope it helps his back. Still sore at night? I presume they think it's the cancer rather than the treatment? I really hope his immunotherapy is helping and will keep my fingers crossed. Best wishes x

Hi , sorry to hear the immunotherapy was not working as it should! Do you have the drugs intravenously? Did it make you ill ? Or did you have another scan ? I hope some suitable clinical trials come  through.   

I hear cancer research are doing trials  in the Black Country,  more prevention,  which is a fab idea! I have been saying this for ages as sometimes by the time you have found our it's at a late stage.. I think its important to be hopeful too !!!!.. 

My husband immunotherapy isn't working,  either, that's what the consultant thinks.  He had a scan last week and has results next. The pain is in his lungs, they said it probably is the cancer and this co codamol does seem to be easing it the last couple of days..

Weird the flu hab gives you pain? But then my friend refused to have it as she said she's always ill after it !! 

Sorry to hear you have been in hospital,  we are the same no out of hours GP!! And as you say they don't seem to understand.  I do pester people  though as I try and find out as much as possible!! 

Hope you soon feel a little better,  its mentally draining,  but the alternative is to feel low , I try to cheer my other half up, sending  best wishes, hope you get rid of that pain from the flu jab !! Xx