Pneumonitis

Hi seafarerwife how did hubbys last scans go ..im on similar journey with my hubby and im scared to get too optimistic about treatment.  Helen x

Hi Jackie,

Sorry for the delay in replying.

Health wise my husband is ok and that is what is very encouraging.

He had the bronchoscopy with a wash yesterday and we saw the oncologist again today. The wash showed no sign of infection but they were waiting for one more result.

He has been the topic of a lot of discussion. The cancer is in the left lung but what has been giving them concern is in his right one. She mentioned a three word term - the first word began with g - but that is all I can remember.

As of today, they are going to see him on Tuesday and if everything is the same another infusion of Pembro will take place the week after.

Hope all is well with you and your husband.

Take care

Jean xx

Hi Jean

That sounds very encouraging and glad all seems to be resolving and you can move on with the treatment.

My husband is so much better than last week but I think the high dose steroids and antibiotics have sorted him out. It's still likely he won't restart treatment as he was on Durvalumab which is a new immunotherapy drug which our oncologist has accessed through the Early Access to Medicines Scheme.

I hope everything continues to go well and keep in touch, I will let you know what the outcome of our next appointment which is Friday week.

Jackie x

Hi Jackie,

How is your husband doing?

Del is having another treatment of pembro tomorrow, oncologist will see him weekly until they are sure it is not inflammation. So it is good news here - hope you have received some too.

I have placed a friend request - hope thats ok.

Take care

Jean xx

Hi Jean

Great news for your husband, pleased for him and you. My husband feels much better, breathing better, coughing less steroids have done the trick.

We're seeing the oncologist tomorrow and hopefully start steroid reduction. We'll know for sure if he can have any more immunotherapy, think he won't but we'll see and we have quite a few questions.

Accepted your request, thanks for that nice to know there's a friendlier there

Hope immunotherapy goes well tomorrow and will let you know how we get on.

Jackie xx

Hi Jean

Saw oncologist yesterday and he reduced his steroids and will re-assess him in 3 weeks. If the inflammation continues to reduce then he will restart his immunotherapy. Good news at last, obviously need to shift this pneumonitis but cheered my husband up no end...and me. Just felt as if we are getting somewhere again. He's having another CT the week before so that the onc can see whats happening and then fingers crossed hell restart the following week or so.

Hope all went well with your husbands immuno last week.

Keep well

Jackie xx

Hi Jackie

I was pleased to read that your husband was feeling much better. Has he managed to restart treatment? 

Unfortunately I developed inflammation in my lung following my 3rd infusion of Duvalumab  (which I too have via the early access to drugs scheme) It was only indetified as I was given a CT scan, I had no symptoms. I've been prescribed a steroids for a period of 7 days. My oncolgist is currently on leave but I expect that next week's infusion will be cancelled so feeling a little deflated. 

All the very best to you and your husband

Nikki

Hi Nikki

Don’t be too downhearted this is a common side effect of immunotherapy and easily treated when caught early. Our oncologist put him on high dose steroids and is on a reduction plan and has a CT booked in 2 weeks. If the pneumonitis is under control he aims to restart after that. My husband felt the same as you, disappointed and worried that the treatment would finish but apparently that is a 12 week window to get this sorted and restart so we felt much happier once we heard that. Really hoping the CT shows a good response to the steroids and he can get going again.

So hope your inflammation settles and you get restarted soon.

What stage are you? Do you know, hope you don’t mind me asking.

Jackie xx

Good morning Jackie, 

That's very reassuring to hear that there is a 12 week window to clear the  pneumonitis. I can relax a little now, although the steroids are making that very hard at the moment. I've been up since 04.30 but looking on the positive side I've cleared all my ironing. They prescribed 40mg which I thought appeared to be a high dose, you mentioned that your husband has a dose reduction plan in place. There has been no mention of this to me. I'll check with the lung cancer nurse on Monday. 

I'm stage 111b T2 N3 M0 - my understanding is that to qualify for Durvalumab apart from from testing positive for PD1 then this particular immunotherapy is for those whose cancer had not progressed following chemoradition. Do you mind me asking what stage your husband is? 

 I hope that your husband has a positive scan result in 2 weeks time and that he can resume again. it certainly sounds that he is heading in the right direction for this to happen. 

All the very best wishes to you both

Nikki xx 

Hi Nikki

My husband started on 80mg steroids and is now down to 40 then 30 next week. Think he was put on very high dose as he had symptoms and am sure once you see oncologist they will reduce them slowly. 

His stage is the same as you 3b T2N2M0  really great to get access to the drug.

Everything crossed for a good result and he can carry on.

He’s had those miserable side effects of waking in the early hours.....I could suggest my ironing pile to him lol.

Best wishes to you too that everything settles. Keep in touch and let us know how you get on.

Jackie xx