Pneumonitis

Hi hartij,

I was about to post something similar.

My husband had his second CT scan on Monday and although the results look good with regards to the cancer it showed what could be inflamation - which can lead to things like pneumonia.

The MDT for our area looked at the scan today and they cannot decide if it is inflamation or infection ( hubby does have a bad cold), so our oncologist is showing the scan to others at The Christie tomorrow. We will then see her again on Friday to get to know what it is.

If it is inflamation then the treatment stops and steroids are given.

I was going to ask how long will he be on the steroid treatment and when things clear do we go back on Pembro.

Lets hope someone can answer our questions.

Good luck to you and your husband.

Jean

Hi Jean

Glad to hear someone else in the same position. My husband started steroids Tuesday and is feeling better, no immuno this week seeing oncologist tomorrow and find out what the plan is hopefully.

Will get back to you after that and yes lets hope someone out there has been in this position.

Hope all goes well with your husband

Jackie x

Hi

Just seen oncologist treatment now on hold and will probably not restart!

So where does that leave us, not sure very confused and disappointed.

Need to ask oncologist further questions which we will in 2 weeks

How did you husband get on ?

I'm really sorry to hear that treatment has ceased for now. Hopefully you will get the answers you need at your next appointment. 

I had my 2nd infusion Durvalumab yesterday. They are planning to scan following my 4th infusion which will be sometime after the 19th April if all goes well to then.

Hope it all goes well for your scan. My husband has been unfortunate to develop pneumonitis and durvulamab won’t help if it’s continued.

Anyway he’s had 6 infusions and a positive scan result so that doesn’t mean he won’t still respond even though the immunotherapy has stopped, we just hoped to have more.

Good luck and keep the infusions going

Jackie

Good morning Jackie,

We are no wiser, they still cannot decide if it is inflammation or infection. They have decided to do a bronchoscope which he vowed never to have again.

His treatment for next week has been cancelled and we go back to see oncologist on Weds.

Keep in touch 

Jean x

Hi Jean

Isn't it a nightmare! That's horrible having to have the bronchcoscope again but if it sorts out what it is I suppose that helps.

Is your husband well at the moment?

My husband has improved with the steroids and antibiotics but of course now he's immunosuppressive because of the steroids so have to be careful of infection the same as when he had chemo.

Hope things move along quickly for you

Jackie x

Hi Hartij 

My husband has had pneumonitis three times now. The first couple of times it resolved with steroids and he went back on treatment, but now he has had nivolumab treatment totally ceased. Our onc  has said thst a lot of people that have good responses continue to stay stable after treatment stops, and if the cancer deactivated he will try a different immunotherapy treatment x 

*re activated 

Hi

Thanks for that reply, it really helps to hear that.

I think onc wants to do a PET scan to see what’s happening with the tumour.

Hope all goes well with your husband 

Jackie