I was given 5 months to live back in 2016 when diagnosed with stage 3 lung cancer. I did a clinical trial with infusions of pembrolizumab and ramuciromab every 3 weeks  for 2 years. I am still here, good luck.

I was diagnosed with a secondary brain tumour, primary being lung cancer. Brain tumour was removed completely and I had pembrolizumab treatment every 6 weeks for 2 years. I am pleased to say that it worked so well for me with mild side effects of tiredness and dry skin. The tumours were reduced in size and have stayed the same ever since. My brain tumour has not grown back and here I am 5 and a half years later living a normal life as if the cancer never happened.  I set myself little goals and keep a positive mindset. I'm awaiting my most recent scan results and I fully expect things to be just as they have been each time but obviously you never know, so I do prepare myself for bad news just in case. I am one of the lucky ones. I lost my mum and aunt to lung cancer, my aunt was 53, my mum was 57 and passed away just 9 weeks after diagnosis. I turned 60 last July and put it all down to the immunotherapy.  Treatment has come such a long way since my mum and aunts days. 

Have you asked why you couldn't have pembrolizumab? I'm sure there must be a medical reason for it. I was told that I was given it as they have seen really good results in lung cancer patients having pembrolizumab as a targeted therapy. 

My only symptoms of lung cancer were breathlessness, a cough  and an extremely runny nose, not enough to persuade me to visit a doctor but my nephew insisted. (Also, those symptoms may have been the result of a chest infection.) By then it was stage 3, I could easily have put off the doctor until  stage 4. A cancer caught early enough can be cut out but it was already too late for me as it is for so many people. 'Larry the lodger' love it, uninvited and once evicted you are not having him back.

No one has ever mentioned stages to me but I assume I'm classed as stage 4 because it had already metastasised.  I've also not heard the word terminal used either, it was described as incurable but treatable. 

Larry is well out of the picture now and I don't want any more lodgers lol  

My understanding is stage 4 is as you said, the cancer metastasises and secondary tumours develop. I don't remember the terminology the doctor's used but I was told it was terminal and was given a probable 5 months, a simple estimate on how long does it take a tumour the size of mine to be terminal on average according to the data available at that time. 'Incurable but treatable' sounds a little anodyne to me but maybe a more positive way of putting it, as when the dentist mentions you may feel a little discomfort,

Reading these posts makes me want to hug you both. You are both walking miracles and it’s like getting the best Christmas present ever knowing that you are both survivors. Keep going. Onwards and upwards. It’s an absolute joy hearing that these miracle drugs are doing what they’ve set out to do and more. Yippee. Xx

No I just accepted what Doctor said, that Pembrolizumab was preventative, and as it has gone to my pancreas they opted for Nivolumab. Hope that is just as good. Hope it’s not because I’m 70. I’m back at hospital tomorrow I need headaches to stop.

Glad you’re doing well. Great to hear. Regards Carole

I think pembrolizumab is used differently with different cancers as it effects them in different ways so I wouldn't necessarily doubt what your oncology team have said. I know that it's used in metastatic disease for melanoma and some lung cancers but I really don't know much, especially not about how it's used with kidney and other cancers. Always worth asking questions though. When we have little control of what is happening with our bodies it's important to at least have clarity so the decisions we do make are informed.

Wishing everyone the best of health in this new year x

I wish everyone a happy new year and good health and news

Hi Rose

Good to hear you are getting on well and remember you promised yourself a holiday after treatment early January. Me too, I get immunotherapy cycle 4 this week. Then were off to Spain for a break. Lots of good news on this thread.

Ed

Wonderful to hear from you dear Farmer Ed. We should have flown over to Spain but ️ it until next Saturday morning. I’ve now had 3 cycles of Pembrolizumab and all is well. Delighted to hear you too are heading to Spain. It has started to get warmer again after a cold snap. Where are you going to? We’re going to Torrevieja as usual! We bought a house there 23 years ago and we love it there. Enjoy your much longed for holiday. Xx

Wonderful to hear from you dear Farmer Ed. We should have flown over to Spain but ️ it until next Saturday morning. I’ve now had 3 cycles of Pembrolizumab and all is well. Delighted to hear you too are heading to Spain. It has started to get warmer again after a cold snap. Where are you going to? We’re going to Torrevieja as usual! We bought a house there 23 years ago and we love it there. Enjoy your much longed for holiday. Xx

Thanks Rose

I'm so happy that your treatment is also going well.

Enjoy the break to your home from home.

Whatever the weather is like Seville will be great and warmer than UK, might drive down to the coast for a couple of days.

Ed

You’ll have a wonderful time for sure. Don’t forget your Global health card. Be careful of thieves while sightseeing. Don’t carry your passport, take pictures of it and all other important documents. Sundays are the worse days for pickpockets. Don’t keep your wallet in your hip pocket. Make it difficult for the opportunists. Seville is a lovely city, enjoy it. Remember, it’s warm during the day but the minute the sun goes down, that’s the end of any heat!  Make sure you have wool sweaters with you. Safe travels. Xx

Hi Rose

Thanks for travel tips re warm clothes etc. Croydon has us well versed in awareness. Looking forward to our break.

Ed

Baltic over here in NI. Can’t wait to be in the sun. Hope we all have a great time. Best wishes. X