Pembrolizumab & possibility of U. Colitis recurrence?

[MacColl]

I have just been approved for Pembrolizumab, but the only worry the oncologist had was that it could cause U. Colitis to flare up.

I had U. Colitis & sepsis in autumn 2015, and my GE had it under control within a few months using Octasa 800 - He told me to stay on two per day as a maintenance dose, and it has worked well ever since.

I'm just wondering if there's anything I can do, take or eat to help or hopefully prevent this happening. I do so want to give the immunotherapy the best chance of agreeing with me and working.

[powderpuff]

Hi MacColl,

Having just read a bit about this drug it seems that should the UC flare up steroids & immunotherapy can be used after (not before) the Pembrolizumab has started.

If you have remission at the moment its small comfort if on top of everything else you might have a recurrence, but the lesser evil!

The only other thing is diet but I doubt that would stand the test.

Take care & good luck.

[MacColl in reply to powderpuff]

Thanks for the reply.

The U. Colitis has been under control since mid 2016, but I've been very careful to stick with an appropriate diet, and avoid anything (including full doses of steroid asthma preventer inhalers) that could aggravate it. Any sign, no matter how small, and I'd increase the Octasa to 3 times daily for a few days.

I don't tolerate steroids well at all - they cause distension (which affects breathing), and lower back & hip pain. It took months for the side effects to go after I'd had colitis, and I lost a lot of sleep because of it.

Still, if I should find I have to take them, I will ...colitis is very unpleasant, but NSCLC is far worse.

[powderpuff in reply to MacColl]

Good morning MacColl,

I have had Crohns for 25 years so I understand rampant IBD & definitely echo your thoughts of steroids - their effects caused me all kinds of long term issues that I’ll never be comfortable taking them again. It’s reassuring for you to find medication that can keep your UC dampened down, so often disease is just unmanageable.

Very best wishes & good luck with your treatment!

[MacColl in reply to powderpuff]

Thanks - I think I was lucky in finding a GE who respected my thoughts on steroids, and once tapered off, put me on Octasa 800 4x daily. Gradually reduced to 2, and he thought it best if I stayed on them as maintenance. So far - fingers crossed - it's worked.

These diseases sometimes don't sound much, but anyone who has them knows they can be dreadful, and really alarming at times.

Just wish there was a 'plan' for NSCLC immunotherapy vs U. Colitis!