Whole brain radiotherapy

Hi ,

@irishrambling has had targeted brain radiotherapy (gamma knife) and  has had whole brain radiotherapy, but for secondary lung cancer. I have tagged them both.

is  now on immunotheraphy, can't remember what combo.

You might also try posting in the Brain, secondary cancer group 

Yes, I had gamma knife and then niv/ipi immunotherapy. I had no probs with first two doses but really bad reaction to the third one and ended up in hospital for nearly 3 weeks. Not sure what next treatment will be and because the immunotherapy I've had seems to be holding things at the moment am on watch and wait until end of May. I've got a note from the hospital saying that they are going to do my CT and MRI scan on same day. Meanwhile the GP's surgery is doing regular blood tests as they try to wean me off the steroids I was put on in hospital. 

I also have the immunotherapy rash which comes and goes. It doesn't hurt but it is odd. I'll suddenly look at one arm and it will be bright pink while other arm is normal. Mostly it's on my legs.

Before the gamma knife I could really hardly walk and was giddy and nauseous all the time. I live on my own so it was all very scary.  Now I can do 10000 steps a day and have no problems with stairs or looking after myself. 

Thank you for your response irishrambling, sounds like you are making great progress, keeping your strength up is great and also I’m sure gives you some relief from the lockdown.

my mum has her 1st immunotherapy treatment next Monday, she is feeling very well at the moment which is good as we know she may suffer from side effects.

Her full brain radiotherapy can’t be confirmed until June which is 6 months post targeted/gamma radiotherapy. Fingers crossed we get an appt in May/early June.

All the best of luck for your end of May scans, everything crossed for you.

xx

P.s. I’ve warned my mum about the rash...... thank you xx

The combined treatment is quite long. Mine usually lasted about 3 hours plus. So I'd recommend she takes plenty with her to keep her occupied. Snacks are a good idea too. Not sure if anyone can go with her. The friend that takes me brings cards, quizzes, crosswords etc.. So we have quite a fun afternoon. It's also a good idea to have something which means you don't have to talk to the patient next to you if you don't want to. I hate sitting next to people who slag off the NHS and their treatment and the staff, so try to have something I can escape into rather than getting trapped by their negativity. 

The reason it takes a long time is they have to give you each drug separately and flush the line in between. This is so, if you have bad reaction they know which drug you are reacting to. I'd assumed they'd just mix the two together, like some exotic punch. Not so simple.  Also the cost of it is so high, that they don't make it up your cocktail until you have arrived at the hospital. This is due to no shows. So I usually get there for noon but the actual infusion doesn't begin until well after 1pm. I'd also recommend that she drinks as much as she can before the treatment as this will make getting the cannula in easier. Don't worry about needing to go to the loo as a result as they will just unhook her from the drip or she can wheel it with her.. 

The possible side effects will be stressed again during the treatment but it is important to remember that no one gets them all. I had to go to an introductory session where one of the people fainted, resulting in the calling of the crash team. It was all a bit dramatic. But it turned out to be the person accompanying the patient rather than the cancer patient! 

It's an amazing treatment. She will be fine and well cherished by our wonderful NHS.

Thank you so much for this irishrambling.

My mum had her 1st treatment on Monday, actually enjoyed it!! Think it was mainly because she was out of the house for a few hours!!
everyone looked after her and went through every step of the process.

We are 48 hours post treatment and no side effects yet...... everything crossed for now.

4 weeks until the next one and hopefully in the meantime an appt to see the brain consultant for her multiple brain mets.

Thank you again, all helps with keeping my mum well informed.

XXX