Immunotherapy and colitis

Morning , I too am in Immunotherapy Durvumulab for nsclc stage 3 , the diarrhoea is horrendous  but I just take loperamide 3 tablets when it’s bad it helps for a couple of days then starts all over again I haven’t told 5hem how bad it is as I’m frightened they will take me off it as this is all they can give me now after having my chemo and radiotherapy and it’s working. I also suffer from severe joint pain was put on steroids but side effects were horrible so now just on paracetamol and codein. Only got 3 more infusions so will just put up with it., hope they restart your treatment have you asked if this is the plan, take care .

Hi evelyns I’m a bit worried that you are not telling them because the immunotherapy is attacking your bowel I know exactly how you feel iv had 6 cycles my tumour has shrunk from 6.5cm to 4 the problem is with me I already have ulcerative colitis but not had a flair up for 17 years iv to see gastroenterologist for camera and biopsy’s to see if it’s a flair up or immunotherapy the oncology thinks it’s the immunotherapy and so do I do hopefully I will be back on my treatment in 3 months good luck with the rest of your treatment Lj56 

Keep going I have stage 4 incurable had immunotherapy but got liver damaged been terriable on high steriods ended up on hospital over Christmas my body rejecting my liver due to immunotherapy attacking it still on steriods but my recent ct scan showed I had chemo again my cancer has struck maintaining this so happy but relaxing of chemo for now as still on 60gsteriods a day from over 200 g  seen liver specialist like the doctor said chemo has done what we need they don't want me getting ill by pitting more chemo in as cancrr side now looks good hopefully 6g a week off steriods and hopefully liver don't flare up let the new liver tablet take over strriods it's all a rollacostet good and bad but there's light at the end great yo have some positive news keep going 

Hi Lj56, I did go thru tests a couple months ago, everything was fine thank god, it hopefully is the Immunotherapy as that can be a side effect. I feel worse the more treatment I get, as I said it’s the joint pain plus fatigue that gets me down . But it’s doing it’s job my tumour was 6cm shrunk to just under 3, Hope everything works out for you, take care, Evelyn.

Hi Toniblade, it is a rollercoaster but as you said there is light at the end of the tunnel . I’m stage 3 advanced nsclc treatable but not curable, Sorry your going thru a tough time  but hopefully new treatment works.

How are things now? I have stage 4 nsclc spread to lymph nodes. And am in hosp on steroids ? Colitis from my immunotherapy.  I have had 31 doses only 4 to go for my 2 Yr plan 

Hi Hollsmolls iv been in hospital twice more with diarrhoea since  my last post on hearbeen on steroids all that time seen gastroenterologist and it’s colitis but not caused by immunotherapy my oncologist is now having to reapply to nhs England for immunotherapy to start again because it was cancelled iv only had 7cycles and my tumour has shrunk from 6.5cm to 27mm I’m hoping to start treatment again on 19 September if nhs England accept me back on immunotherapy how much has your tumour shrunk hope you get home soon good luck Lj56 x

Hi 

Thanks for answering.  I'm not sure of present size other than oncologist said my scan results were excellent yesterday it started at 3.8 and spread to lymph nodes. Scope yesterday was clear for ulcerative colitis but they took samples for microscopic colitis.  Oncologist has now done a plan for medics and has added another infusion to add to steroids. infliximab is its name. So fingers crossed. I hope you keep well and your immunotherapy gets sorted. Up till now I had no issues with it. So good luck.

Hollamolls

Morning I’m sorry I can’t help with your questions etc I’m only just beginning this journey but wanted to say I’m sorry you’re going through this and send some support x

Hi hollsmolls

had scope done while in hospital and biopsy’s showed microscopic colitis gastroenterologist as put me on Budesonide so I can take that with immunotherapy hope you get results soon good luck Lj56 x