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Treatment essentials

Posted by

Hi my husband is due to start immunotherapy on Tuesday and I was just wondering if anyone had any essentials items they think are helpful? Thinking snacks, ipad, headphones, blanket, pillow, lip balm. Many thanks x

Posted by

Hi , I read your profile to see which immunotherapy your husband was going to be on, I see it’s ipilumamab and Nivolumab. That treatment takes a bit longer than the Pembro that I’m on, for the first 4. 

I have taken sandwiches when it been timed to go over lunch time, but my hospital has usually handed out sandwiches at lunch time, I’m not one for snacks as I was diagnosed with type 2 diabetes at the same time but my husband always puts an apple and banana in his back pack incase we are not home for a meal time. 

We always take water with us so that I am hydrated before they try and put the cannula in, it’s the thing they always ask if they fail to get the cannula in first time, “have you drunk enough water today”.

Its usually warm in my hospital so no blanket required but I often fall asleep in the car on the way home so pillow and blanket in there may be nice. The hospital always have pillows to rest the cannulated arm on, I wouldn’t want to take in one of my own due to potential germs in the hospital, cross contamination and all that. 

I always wear something that I can pull the sleeves up on for them to put the cannula in my arm rather than my hand (the hand hurts more).

You do need something to occupy yourself, I always have a codeword book with me, but often they put the cannula in my writing hand so that’s out. My husband often gets a newspaper to read from the WRVS shop. My husband pops of when they put the cannula in as he has fainted at my daughters birth, and when they have had a few attempts to put the cannula in I prefer him to not be there. There’s not a lot of room between seats at my hospital so I’m conscious of not taking up too much room with stuff. 

Sometimes there are volunteers who come round to chat to people on their own or to couples and ask if you want a cup of tea, it helps to find out where everything is located so that you can do that for your husband when they are not around or are busy. 

They also send you home with any tablets that they think you might need. The first time that was anti diarrhoea which I didn’t need, I don’t have anything now but I have needed antihistamines when I came out in a rash 2 weeks after my first dose. 

They will give you a 24/7 telephone number to ring if you get any problems and you’ve probably had the list of possible side effects. I just get a bit tired for a few days. 

I hope this helps, good luck for Tuesday.


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Posted by

Hi Charlie_12,

I had my first Ipi/ Nivo a couple of weeks ago. My hospital rang the day before to tell me to come for a pre treatment blood test which hadn't been mentioned in my letter, so perhaps you should check into that too?  I understand that in my area the treatment will not take place unless the blood tests are complete.

Otherwise my book (old school paperback) my phone with radio app, (headphones) and a couple of twix fingers saw me through no problem.  From start to finish my treatment took over four hours so I expect your husbands will be similar.

So far, apart from an itchy rash I have had no side effects at all. 

Take care

Don't wait for your ship to come in, swim out and find it!

Posted by

Thank you for your detailed reply. I hope this finds you well. Take good care

Posted by

Hi thank you for your reply. We attended hospital on Thursday clinic where they informed us in his change of treatment and bloods were done then. We also attended on Friday for a pre treatment talk and clinic appointment, so full steam ahead. You’ve had a tough journey yourself so I wish you all the very best with your treatment and really hope its works for you. We know we’ve got a battle ahead of us but where theres a plan theres hope. Take good care