Delayed immunotherapy colitis

Hi Tillyboo 

You should get more relevant responses if you post in the lung cancer forum, as this general chat group may not have people who have experienced the same as your husband.

I’m so sorry you are having such a difficult time while you are trying to take a short break away, but at least your husband is getting treatment at his hospital visits while you aren’t with him.

Sarah xx

Thanks. I thought I did, my heads a mess at min! Just reposted in lung group

Hi Tillyboo 

It sounds like your husband has had what’s known as an immunotherapy related adverse event, where the immunotherapy has resulted in his immune system attacking healthy organs. I don’t have the same cancer but I did have a serious IRAE after about 5 or 6 treatments with Pembrolizumab. In my case my attack primarily impacted kidneys and thyroid, but I also had some lung damage. The main treatment for this sort of thing is steroids. I also had IV steroids and then progressed to high dose prednisolone. I had to spend 9 months slowly weaning off the prednisolone but did gradually recover kidney function. My only surprise is your husband had this when they said the immunotherapy wasn’t working on his cancer - IRAEs are often correlated with a good response. The positive benefit for me was a - so far - sustained remission.

There are several drugs in the same class as pembro. Anything classed as a PD-L1 inhibitor or PD-1 inhibitor can cause these effects. The science is along the following lines. Where a cancer expresses PD-L1 it can be treated with a PD-1 inhibitor, and vice versa. PD-1 and PD-L1 bind together to create immune privileged zones around key organs. The cancer is using this same mechanism to hide from the immune system and by breaking the bind, the immune system can ‘see’ the cancer. Plus the organs that should be hidden. Colitis is one of the most common IRAEs. 

These drugs have a long half life so late effects are not unusual. 

I had a few calls today with doctor. Hes now on oral steroid prednislone. All happy with CT & bloods, no antibiotics needed. Saying keytruda as caused this bowel inflammation. But happy how hes responded to IV steroids & fluids yesterday, hence oral steroids from today. He managed to eat & keep the food in the bowel all obs ok. 

They want him back tomorrow in urgent care just to make sure alls ok & have said all other organs fine & to attend hus next chemo next week & the onco team will decide then whether to give or delay. But no other tumours have shown anywhere else, thank god! 

His calcium level had dropped so giving him a higher dose than adcal d3. All because of the bowel problem, he was losing bowel movements like water & couldnt keep any food in. So a bland diet for a few days & will be weaned off the steroids. To say we were shocked at the fast onset of this. He was feeling fine eating going out etc the best he'd felt, so decided for me to have a break & its been hell. I've literally spent my time on phones to docs & urgent care at Marsden, who have been amazing. 

My husband doesnt cope with medical things & gets anxiety, but doesnt tell docs nurses. So I've been explaining to them as they werent aware & todays last call was a speaker call with me doc & husband so doc was talking & I was asking questions, then relaying back to my husband. Who had convinced himself the CT scan was going to be cancer spread etc so its been very stressful, in fact I feel more stressed having a few days respite, than if I'd stayed at home. But I'm back Thursday early & hopefully by then all this would have settled.

Its been a tough few days! 

Thank you for your reply x

That sounds good. My advice would be to expect it to take time to resolve. I thought I would be weaned from prednisolone within 10 weeks, but it took 9 months, I was on 60mg a day for the first few weeks. Pretty miserable on that dose, no sleep, jitters, no sense of taste. Keytruda (Pembrolizumab) is a wonderful drug but can have some horrible consequences. I tell people it saved my life, but nearly took it in the process. 

It didnt work for my husband. It did at start then lung tumour grew & changed to chemo. Been a nightmare

Hi Coddfish many thanks for all your comments. You said you were on prednisolone for several months. My husbands reducing dose from Monday 60mgs down to 50mgs per day. He as gone back to normal re food & as to have a sigmoidoscopy to check for any bowel damage, apparently normal after an event like this? 

He is back in Marsden Tuesday to see about radiotherapy on iliac crest, as he had lung cancer spread to 2 bone mets L5 had radiotherapy in April & they plan to do some radiotherapy on the iliac crest, but due to the bowel event that as been delayed, hence Tuesdays appointment & aim to start on 20th Oct.

He is also having all bloods done to see if he can have 2nd chemo as planned on 17th Oct. Oncologist is calling me Tuesday to advise.

Is there anything I should be asking onco re length of time on prednislone, seems quite a short course in comparison to youself? 

I really just need to know what I should be asking have it all written down, as currently my heads a mess, tired stessed etc & husband doesnt take anything in, he blanks out & as always been the same with anything medical.

He hasnt had any side affects to the prednisolone, he was also given extra ADCAL D3 for calcium & Sodium Phosphate. As all his levels had dropped. Hes now stopped the Sodium.

Also takes metoclopramide for nausea, but hasnt had any since the urgent day care.

So any advice you can give me to ask onco Tuesday re meds & this colitis reaction, I would appreciate, as I'm trully out of my depth & so tired my thought process isnt great at the minute & I have no support network at all.

Again thank you for your comments.

They will judge when to reduce based on the stability of his symptoms. My issue was how long it took my kidneys to recover - I couldn’t step down the steroid until my kidney function improved and then had to go very carefully. Then, I had been on steroids so long, the wean itself had to be done very slowly to stop me having withdrawal issues. It was about 3 weeks before I could go from 60 to 50 a day, and by the end I was taking 2 weeks to get from 2 to 1 and so on. But it all worked, kidneys eventually returned to normal. 

Ok thanks