New treatment

Hi Sweetpea21,

Wow that's quite a journey, I don't know much about Renal Ca but what I wanted to say is how much I admire your tenacity and resilience in getting RM to review your case.I must admit only today I was thinking I have next to zero rapport with my Consultant Oncologist and how I wished I could have someone I felt I was in partnership with.Im sure he's very bright and academic but he has no bedside manners or warmth so our meetings are rather disappointing.I stopped one of my Chemo drugs on Sunday as it was making me so ill.Today the hospital have made a new apt for me to see him next week...and like a child I felt he was going to " tell me off" ...this is what made me realise he's perhaps not the consultant for me.But RM is miles away.SO well done you for sticking to your guns.RESPECT.

Lizx

Oh Liz I"m so sorry to hear this.  Don't think you have no options, my palliative care nurse said once you have to be comfortable with your treatment worry is not good. Find someone to talk too, gp, Macmillan or you could talk to pals at the hospital.

Also look into private second opinions they are more reasonable than you think and most will do a written report or zoom call which is what I did with RM. I wish you well and please speak up.

Hi

Well done for seeking 2nd opinion from RM. I am glad you have moved your treatment to a different hospital. It is essential that you have confidence and feel comfortable with your clinical team. Best of luck with your new treatment. X

It must feel good to get a more specific diagnosis and a way forward through a new team. I don’t have experience of Atezolizumab, but I do have experience of a similar drug, Pembrolizumab, for a different cancer. Checkpoint inhibitors like these can often have really good results - mine has put me in remission. Wishing you all the best. 

Hi, I have been on Atezolizumab since March, it's the standard ommunotherapy for lung cancer and other cancers here in Germany. I am a bit reluctant to share my experience because the response to it is highly individual. I think it is safe to say that if NICE has approved it, it works for the majority of people. I personally had a mild form of colitis in the early stages but it has got progessively better. I know of one person who developed pneumonia but most people who I have talked to notice nothing more than dry skin or a rash. Go for it and good luck.

Hi I can only speak of my experience of immunotherapy which really wrecked me from walking everyday to a total coach potato. I suppose I felt rubbish for over 6 months and the treatment didn't work and didn't leave me in a good place . They have since put me on Dexamethasone which is like a miracle drug as , I can now function properly. The issue now is  just waiting or risking hospital with chemo for the potential of an extra few months of living. I am about 5 years in and had chemo , radio , surgery , immunotherapy so its not like I havnt given it a bash getting well. I am not. a quitter by any means and dealt with some pretty harsh side effects. Its just to easy now to end up in hospital . Any chance is better than nothing at the early stages imho . All the Best Minmax

Hi Minmax, what imnunotherapy were you on? I wonder why they didn't give you steroids sooner. If the immunotherapy doesn't work for me, I will be facing exactly the same options as you. Keep safe.

Hi Sweet21Pea, Well done for taking the bull by the horns and seeking out a second opinion. I’ve actually done it myself for a Consultant Optholmologist, he was meant to be the Big King Pin that everyone wanted to be seen by. Not me, he never spoke to me but to his registrar who then told me what we were doing next, it happened every time I went over about 6 months. My eye and sight were getting no better. When I was told to make another aptm I said to the girl on the desk could she please put me in with another Consultant. Oh that’s not the way it’s done, I couldn’t possibly do that.    I walked away, I wrote to the Head of the Hospital (because HE was head of the eye dept) told him I wanted a second opinion from someone who didn’t work with him. Three weeks later I got it as part of the screening for a drug trial and was told I had A Melanoma in my right eye. I had been treated for months for inflammation. Even those at the top can make mistakes but it was his arrogance that got me. Even when I tried to addressed him he turned away. We are the patients, because of us they get paid, they are no better or worse than we are but if anyone is not happy with a doctor, Registrar, Consultant or Surgeon, there are plenty more out there and they are not all at the RM. So please look around.

Please Liz, don’t feel you must attend if you are told to, ask for a second opinion. You will be amazed at the respect you get for doing so. The only person who “told me off” was my own fantastic Oncologist and it was for not mentioning it to her first  that I wasn’t happy. You go for it!

Well SP why stop at a book, what about the Film Rites! Lol! Now I’m off my soap box,sorry!

Hi anndanv lovely to hear from sadly it's more common than you think and unfortunately it is part of the NHS problem. I just hope by speaking out I can maybe stop someone reaching the end unnecessarily. Sending love as always 

Hi Gilpat Its was the one that acted like a fertiliser growing my tumour by 50% so you defo dont want that one lol . We're all different and these drugs react accordingly . I was told there is a 20 % chance of it working so hopefully you will be grand , Think positive , I dont know why they didn't give me the steroids earlier. At least they work that's the main thing as I cannot change the past. I am suppose to be tapering off to a tablet every second day this week and stopping the following week . I hope I dont crash without them and my body has improved if that's possible. All the Best Minmax