immuno stopped due to inflammation

[mishamilo53]

morning everyone , I’m currently on immunotherapy ( only had two so far) but this month I’ve developed a cough , chest infection, the hospital checked and say there is inflammation and infection in my lungs , either as a result of immunotherapy or previous radiotherapy… they’ve stopped my immunotherapy for now and put me on a course ( 2 weeks worth ) of steroids 12 a day ( prednisone) and antibiotics …I’m absolutely terrified of taking the steroids they get such bad press and I’ve heard horror stories … can anyone allay my fears about them please ? ….. also .I’m worried they will say I can’t have any more immunotherapy because of this reaction. …. I’m an anxious wreck this morning …… Elly x

[Cosmic54]

if the infection is immunotherapy led then they will stop it if it’s infection led the steroids should help then back on the treatment. They stopped mine for 3 sessions, steroids cleared it now back on treatment plus 5mg steroids just had my 21st session 😂 hope it all works out for you pet 💋 my treatment is Keytruda x

[mishamilo53 in reply to Cosmic54]

Thanks for your reply love …how did you cope with the steroids hun ? Are you still on them ? I’m scared of them I must be honest x

[Cosmic54 in reply to mishamilo53]

I’m on 5mg daily as well as treatment now, I was on 30 for 5 days then 20 then 10 now 5 and it seems to work, nothing horrid happened to me maybe I wasn’t on the high dose for long enough to have any side effects but my appetite came back big time I was hungry and kept getting the munchie’s 🤷‍♀️ Put on a bit more weight but I needed to 👍 I’m still on them and so far so good no more infections 🤞I also have laryngeal palsy thanks to my lung lodger so only one side of my larynx works so when I swallow I have to be careful otherwise any food or drink can choke me and go down to my lungs 👎 I’ve not herd my own proper voice for such a long time now, I did have a strong voice with a London accent, I can’t sing (couldn’t anyway) … can’t laugh properly … my voice is a bit breathy but thanks to speech therapy I have a stronger voice AND now my husband CAN hear me 😂 all in all it’s all a bit crap but mustn’t let it lead my life at least I’m still here 👍💋

[mishamilo53 in reply to Cosmic54]

thanks for explaining all that to me I appreciate it I’m in 60 to start with , being reviewed next week … glad they worked for you and you’re still living life .. much love Elly x

[Sydney1949]

hi Ishmaimil

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Mishamilo53,

I am sorry to hear that you have a chest infection and inflammation in your lungs. Your oncology team will want to get you back on treatment as soon as possible, it is very important that you continue to take your prescribed medication including the steroids. If you are feeling concerned about the dose of steroids please speak to your oncologist or Lung Cancer Specialist Nurse as they are the experts who know your case and will explain why this type of medication is necessary and allay your fears.

Below I have added our booklet on immunotherapy which has some information on side effects.

roycastle.org/app/uploads/2...

If you want to talk over the use of steroids or if there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600. Patients and relatives can use this number.

The Roy Castle Support Team

[mishamilo53]

thank you x