Thank you  

Very encouraging especially as it had already spread to your brain, so pleased for you. I have just clocked up 8 years since my diagnosis and so happy that especially in those days immunotherapy was my first port of call. I began responding within 6 weeks of my first infusion and can't think that it was anything other than immunotherapy that saved my life.

I think the brain tumour saved my life if I'm honest because without that diagnosis I would not have known about the lung cancer. I wasn't surprised by the lung cancer diagnosis as it runs in the women on my mothers side so I always thought that I would most likely get it. The brain tumour was a bit of a shock, I named it Larry the lodger as I was convinced once removed it wouldn't grow back. So far so good. I just think that I've been very lucky both with early diagnosis and treatment.  I've celebrated a few Christmases and welcomed 2 new grandchildren in this time and just seen my eldest grandaughter celebrate her 18th birthday. I feel really privileged and truly blessed . 

I was diagnosed with kidney cancer and had my kidney removed in September 2024. I was due to start immunotherapy with Pembrolizumab in November. However, on 11th November the hospital wanted me to have another CT scan, and on my appointment on the 15th found I have 2 Broard bean sized tumours on my pancreas. As Pembrolizumab is a preventative treatment I was told it wasn’t suitable. So incurable the Doctor said, but treatable. They decided to use Nivilumab as the immunotherapy by IV, plus tablets which deprive blood to the tumours. However there was a trial drug being used, an updated version of existing tablet. So I agreed to the new updated tablet. Before starting on the drug (Zanzalintinib Stellar 002 trial) I had to have a bone and head scan, plus heart scan, fortunately they were all clear. I had my first treatment of the infusion plus 3 tablets on 9th December. The following day my knees were aching (I’ve had 2 full knee replacements, which have become really uncomfortable, plus other joints.

On 20th December I had my fortnightly check up,  and mentioned the joint pains, and the Doctor prescribed Meloxicam. Which I started that day. The next day, Saturday 21st  and Sunday I had headaches all day,  so took my blood pressure, and for the first time ever, my blood pressure was very high. I rang hospital on Monday, and on Tuesday 24th Dec managed to collect Candesartan tabs for BP. I was told to stop the trial drugs until my BP was less than 150, and as my BP was 150 on one arm and 145 on the other arm yesterday 3rd Jan I restarted the tablets. On the way home my headache started again. So now I’ve missed 10 days of the trial drug, which is worrying. So I’ve had really bad headache for two weeks. On Monday 6th I’m due for 2nd immunotherapy and I suppose they’ll decide whether to resume the tablets. It seems like Meloxicam and Candesartan both can cause headaches. I’ll go back next Friday, a week early, and they may increase BP tabs, I just don’t feel very well.
I wonder why I couldn’t have Pembrolizumab when it seems some people were on it, even with secondary tumours, and are luckily doing well. It’s so great to hear of the positive results, because it’s scary the thought of stopping the tablets. Best wishes to you all, stay well. Regards Carole

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. 

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