Metastatic large cell neuroendocrine carcinoma

Hi EM1872, sorry to hear about your dad's diagnosis.

I was diagnosed with neuroendocrine adenocarcinoma, partially differentiated, with spread to lymph nodes last September. In my case, they think it is treatable but not curable. I am currently being treated with immunotherapy and am stable.

I wish your dad well with his treatment.

Hello, I was diagnosed with nueroendocrine carcinoma in January, I’ve had a lobectomy - bottom third of my right lung.  Am going for my second chemo session this afternoon.  Think I’m lucky and they’re sure they got it all - including lymph nodes.  After the first session I felt pretty good - hardly any nausea, hair  completely gone - shaved off the whispy bits!  Horrible nerve pain (we think) one hospital visit by ambulance as they thought it was a heart attack!  Seem to be tired a lot of the time and emotional - I cry a lot!! Nerve pain now controlled!  After today I will be halfway through my treatment!  It started as four treatments! I’m wishing your Father lots of luck and a full recovery! Please wish all the best from me

1. Maxine

Hi Patrick, so glad to hear your treatment is going well. Unfortunately my dads was to late to treat by the time we got a diagnosis. We fought for a long time to get answers to him being so unwell suddenly. He was given a poor prognosis and has suddenly become very unwell. I wish you all the best and take care of yourself and keep strong xx

Hi Maxine,

I hope your treatment goes well, unfortunately dad’s diagnosis was too late for any treatment and his prognosis is poor and has suddenly become very unwell. I wish you all the best. Take care of yourself and keep fighting x

Oh I’m so sorry!  How sad.  Sending love and prayers to you and yours xx

Sorry to hear about your diagnosis!  Similar to mine whilst they were Hapoy that they got it all - I have been told that it probably will come back - so lots of scans and tests coming my way once this is over!  I refuse to dwell on that and will take it as it comes!  I have my fingers and toes crossed for you and am sending hugs and love and prayers to you too!  Concentrate on now and keep hoping!  Xxx. Maxine

Sorry to hear that. I hope you have a good team and suitable arrangements in place to keep your dad comfortable and supported. My thoughts are with you.

Hi Maxine, I'm unfortunately not reacting very well to immunotherapy (stomach problems) so if the problems persist after giving steroids they will start chemo as a last option. What chemo are you on and is it more or less tolerable?

It’s not too bad Patrick - so many pills etc and two lots of chemo on the day plus injections.  Very little nausea, lots of emotions and a fair amount of crying but that probably me!  Lost my hair a three weeks but to be honest, no worries about it - beanies are great!  I’m halfway through now - feeling good today (after Friday chemo) but next weekend, after injections I’ll be queasy and a bit of heartburn - so will take anti nausea tabs and a nexium every day!  I wasn’t offered immunotherapy - I had no idea it even existed until joining the forums.  Good luck - I will look up the treatment names and let you know - you might be the on the same treatment.  Take care and stay positive xxxx

  Hi Gilpat trying to upload pics of packets of pills etc for you - fingers crossed!!  The last pic is the injections!  Mine has not mestasised so not sure if you’ll get the same but…  take care and best Maxine xx