Side effects when immunotherapy sessions finished

Hi Pots

I haven't had immunotherapy so don't know if these symptoms you have are normal or not. As I understand it, you should have a 24-hour contact number to speak to a member of the immunotherapy team so it might be an idea to give that a ring this morning to check that everything is okay.

Let us know how you get on.

x

I was told that I was now off the cancer helpline . Have spoken to oncologist so had more blood tests today.  She will be able to pinpoint what’s going on. Thank you so much for getting back to me. I know you have your own troubles to deal with. Pots 

Hi, I have had my sixth session and 3 more left. I have had aching joints this time and have felt fatigued and I am always cold !  There are also a lot of cold bugs going around. How long ago was your last session. Hope you go on okay and are feeling better. 

Hi

thank you for that. My last treatment was 2 months ago. My bloods came back showing low glucose and my thyroid was too high. More bloods in 3 weeks so hoping they find out what is causing all my symptoms. I did have covid in April so maybe that is a contributory factor. I didn’t have these symptoms at the start of treatment. Got worse after covid. You keep going. We’re definitely lucky to get this treatment. Pots

Hi All

I finished my immunotherapy 2 years ago, it did a grand job of saving me (inoperable etc) but it did leave behind a few issues.  When I was on it i got auto-immune hepatitis, auto-immune colitis and generally was pretty ill all round, lots of trips to A & E and almost permanently on steroids.  Now i've finished, it turns out it messed up my endocrine system so i'm on HRT (I'm a bloke by the way), borderline diabetic, have got peripheral neuropathy and random extreme fatigue events, I feel the cold the whole time and spend my life in double t-shirts, big jumpers and thermal leggings.  But considering how damn awful i felt at the time I am now orders of magnitude better, some of the side effects do go away and some get better over time but unfortunately some don't, only time will tell, you work through them one at a time day by day. I know its hell at times, keep strong and there is a light at the end of the tunnel, I've seen it.

Hi heath

thank you for your reply. I’m beginning to get a bit further in everyone believing me that something is definitely not right. Have had more bloods done, synacthen test and seeing endicronologist on Thursday. I keep searching online and think I have quite a few symptoms of type 2 diabetes but they’re looking at thyroid problems at the moment. Steroids have come into the conversation but to be honest I’m not keen on having them. You’ve had such a hard time so hopefully you keep improving. I’m just hoping something positive comes out of my appointment on Thursday. I am so thankful I got the treatment and couldn’t fault nhs for anything. Everyone has been so kind and helpful. Keep smiling. Pots

I have been on immunotherapy for two months now. Touch wood, the only symptom so far was a rash on my back. Aveeno cream sorted it out. All the best all and stay positive!

I had round 6 of Nivolumab last week and feel a bit achy in my joints and muscles. I think I’m a bit dehydrated so going to down some water!  Only felt like this one other time and it was following my second treatment. Oncologist put that down to a virus and there certainly are a lot of bugs going around. Keep us posted! I hope they get to the bottoms of it xxx

Hi everyone 

after more bloods I have been started on medication for under active thyroid. Hopefully this is going to relieve my symptoms. Low dose for 6 weeks then more bloods. Pots

Hi can  i ask where you had this treatment