Immunotherapy

Dear

i am so sorry to hear your latest news that you have gone from curable to incurable. As for a prognosis of a year, I wouldn’t focus too much on that as it’s based on what has happened to people in the past and not you as a individual. There are many members of the incurables forum who have gone way past their initial prognosis, so use it as a guide only, mainly to sort out practical issues and focus on living your best life instead. Morphine is excellent for pain relief but it can turn you into a sleep monster if your not careful, so try to keep it to a minimum. You’ll find lots of support here to get you through the bad days and a safe space to say how you feeling.

Hi !

I have primary Lung cancer with mets in Lymphnodes . They said to me 10-12 Months...that was October 2015!!!

I am on Immunotherapy since Aug 2016 , Opdivio/Nivulumab. Had a few side effects mostly Thyroids. But i think your tiredness comes from Morphine.

Don't give to much of the time frame they give you. I'm still here living a good life since nearly 5 years now. So stay strong and ne positive.

Pet

Thanks for replies... Currently in hospital since early hours Monday morning, just in agony, been on a cocktail of meds and slept loads, feeling brighter today, going for mri of back to see if anything going on there. Very much ready for home, missing my dog like mad, and he doesn't eat if I'm away.... Will update later. Xx

Oh Gsd

So sorry to hear this, hopefully you will be going home soon. Thinking of you and hope its not to long a stay.

Take Care Ellie xx

"You Never Walk A Lone"

Hi GSD

I agree with Jonty, I was told in 2016 that my life expectancy was 12 to 18 months, I am still here 4 years later.  Keep your pecker up live for today I know it is hard when you feel so knackered.

take care

debbiedo xxx

Oh Gsd I am so sorry to hear this. Hope you are soon home with your dog. Thinking of you. 

Hi Gsd Rule

I am sorry to hear about everything you’re going through. It’s been really tough, I bet. 

I have had immunotherapy while on morphine. It’s very hard for me to disentangle what were treatment side effects and what was simply being unwell as the pain was (is) caused by a tumour growing into the renal vein that cut off the kidney blood supply. The kidney died but acted like a blocked sink. On a CT scan it’s the size of my fist compared to the normal kidney that’s the size of a walnut. I can feel it through my tummy - it’s supposed to be at the back. I was absolutely knocked sideways during and after the immunotherapy with hideous fatigue and horrible pain. Looking back, I think the immunotherapy really had an impact but it wasn’t the whole story. At any rate, it achieved nothing for me and the cancer carried on growing. I’m on another trial drug now, the cancer has stabilised and we are on top of the pain with a higher dose of morphine (35 micrograms per hour patch) and pregabilin tablets. The patches work well for me and I’m not drowsy from them. My energy levels have picked up  too. 

I think sometimes it’s impossible to know what’s treatment related, what’s medication related and what’s cancer related - because tiredness is a cancer symptom too. I think we need a narrative or story we can tell ourselves about why we feel the way we do so I get where the question comes from. 

I am sorry I can’t be more precise. The longer I live with incurable cancer - and I’ve been at it nearly four years now - the more I realise how little I know and the better I am able to live with the uncertainty. For me, it’s all about what I can achieve and enjoy today. 

I do hope you’re home soon with your pain under control and a warm dog at your feet 

xxx

Hi GsD!

Oh no, i hope you feel good enough to go home soon. I had a Dog like that, and once i had to be away for a week, and she did not eat. Not even treats..Poor thing.

Hope all will work out for you, Pet

Hi , I haven’t had morphine but have had immunotherapy drug Pembrolizumab (this time from June2018) and always have a few days of fatigue/sluggishness afterwards. My next dose is due tomorrow and I plan things around not feeling different until Tuesday or Wednesday, so I hope your mega rest does you good. Immunotherapy can be a bit of a game changer for some, my under a year was spoken to me in 2015. I hope you are fortunate with your treatment. 

So sorry to hear you're in hospital, but it sounds like you're in the best place at the moment.

My Consultant said in our situation it's increasingly difficult to work out which of our symptoms are caused by cancer, which are caused by side effects of treatment and which may be unrelated, it's very complex.

I hope they'll be able to get on top of the pain and you'll soon be home with your dog.

xx