Hello

So sorry to hear about your Dad. Sending all the positives vibes. 
 

my partner was diagnosed with stage 4 non smell cell in a February. They said 6 months without treatment, approx a year with treatment. He is only 32 and we have 2 young children. 
 

he has had 3 rounds of carboplatib, paclitaxel, atezolizumab & bevacizumab and has his final round in 2 days. From there they'll probably just continue the immunotherapy for as long as possible. 
 

he is the same, has a humongous appetite some days, and nothing some days. I think that's down to the steroids, energy levels & if he's experiencing any side effects it can put him off eating. 
 

he has had no voice since before he started treatment which is what bothers him the most. 
 

I too am curious about end of life expectations. I feel like his treatment has been a safety blanket and I'm scared what will happen once they stop that. I'm not sure why they can't carry on if it's doing the job. 
 

I hope someone can give us some more information. I hate anticipation of any kind. 

I am so sorry to hear that. 

Being 31 myself with three young kids I just couldn't imagine it.

Dad is having his 3rd round on Friday, I can't for the life of me remember what one it is they give him, I know he has 2 days of 2x x chemo tablets the following days after.

We are waiting results from him CT scan to see if it's even working, we have a call with them on Tuesday which should help clear up some bits. 

Today hasn't been a great day, he's been very weak and tired and just sitting, which frustrates him hugely.

The only other meds he is on, is fludrocortisone for the his blood pressure, larazapam for his mental health and a spivia inhaler.

He doesn't actually seem as breathless as if expected at this point, but equally doesn't seem to have had much of any side effects from the chemo. I don't know if that means his body doesn't react to chemo or it reacts very well. One of the two!

If you ever just need a chat feel free to message me :)

To me that sounds like he's doing great, if for the most part he is still self sufficient and living a normal life, that has to be a good thing! 
 

I think with my partner being so young they are throwing everything at him. He's got a ct scan in 2 weeks to see how the treatment has gone but that's all we know. 
 

it's terrifying really 

I hope he is, but I also think he hides a lot and puts on a brave face. He's always been very independent.

Is that the first CT scan for him since starting treatment ?

No he's had xrays before every round of treatment. They said after the first round of treatment there was a little improvement in his scan. But since then there's been no change that they've told us about (good or bad) 

to look at him most of the time, you wouldn't know what was going on inside him. I am hoping he has age and general good health on his side! 

Dave, how are things? 
 

jamie

Hi Jamie,

Honestly not too bad this far.

He has a few bad days after each session of chemo but otherwise he's relatively ok. Certainly no  real lung related symptoms as far as I can tell.

Although mind wise he isn't 100%, not sure if that's chemo, old age or the cancer spreading.

They don't really tell us much but they did say the prognosis has not changed in terms of life left.

We aren't too far from the half way point of "from 3 - 11 months" so that's a good sign I hope.

How are you keeping and doing?

Hi Dave 

similar here - it's been almost 7 months since diagnosis and this is probably the best he's been in all that time. They've finally got his meds sorted and pain under control. His energy has increased, no more chemo symptoms (chemo finished in June). 
 

However he had 1 round of "maintenance" immunotherapy, was due a second but his lymph nodes flared up and was causing him a lot of pain. They scanned him sooner than scheduled and we had a call yesterday to say don't come for the immunotherapy as there's activity in the lymph nodes. They need to reasses his treatment plan. So waiting for a call today. It was already in his lymph nodes but they just believe it's grown. 
 

so more waiting and wondering and worrying for now. 
 

ive got everything crossed for you