Hi Folks

Thought I'd give an update since finishing my 2 years of Keytruda treatment.

Had my last treatment 23rd December, followed by a scan 22nd January this year. I really wasn't expecting there to be any change as scan was quite soon after treatment and I was right, there was no change I'm pleased to say, both tumours on right lung stable with lymph nodes barely noticable.

 I was back a week ago for my three monthly scan when I received the news that they've now found a 6mm nodule on my left lung. Been told not to worry it could be just an inflamation which could have disappeared by next scan which is booked for July. Let them know if I've any pain, weight loss etc otherwise just to keep next app for scan and followup.

I am so scared, worried as I never had any symptoms at all until pain before being diagnosed with stage 4 lung cancer in  December 2 years ago. They have mentioned radio therapy if it is cancer but nothing about being able to back on keytruda. I don't know what to do! Should I just wait until July for another scan or should I maybe ask to go privately for one before then?

Has anyone any advice please. 

So your tumours are stable and lymph nodes are happy? That's great.

I think this means you can consider yourself potentially at stage 1 - nowhere near the stage 4 you used to be and only "potentially" at that. Also, 6mm sounds really tiny - small enough for accurate measurements to be difficult as errors of observation will be of a similar order. I'm in the same place myself, it's just that I'm in "if it ain't broke..." territory so the keytruda keeps on coming. I did ask what would happen to me if I couldn't afford the premiums any more and the conversation turned to radiotherapy, possibly cyberknife.

I'm no doctor, but stage 1 NSCLC has high survival rates and can be removed by radiotherapy to leave all clear. If that's your worst case scenario it doesn't sound so bad. Fingers crossed it's only a temporary inflammation - at least you know they'll be keeping their eyes peeled for it and they'll have a plan for whatever happens.

kind regards,
Steve

Hi

Thank you for your positive reply.

I'm going to try to take on board your comments and try to look forward with a more positive attitude.

Hi my Dad has stage 3 non small cell lung cancer and chemo is unfortantly not working ! I have been looking i to the gene's / mutations and I am going to speak to his consultant regarding immunotherapy . Fo you know what sort of lung cancer your Gran has , any mutations and which immunotherapy she was on ? 

I am so sorry to hear about your Gran and surely if she has not had the full 2 years of the immunotherapy she should be entitiled to finish the 2 years .

I can not bear how the NHS / goverment are putting a price on peoples lives like this ! A horrid and evil disease its so heartbreaking watching the people you love the most in the world go through this ! 

xxxxxxxxxxxxxx

Hi Steve ,

Are you on sotorasib for kras + nsclc ? my Dad has this and chemo not worked cancer has grown so starting him on the sotorasib . 

Thank you 

xxxxx

Hi ,

Sorry sorry to hear your wifes immunotherapy has been stopped , do you know if her nsclc was kras + ? my Dad has stage 3 kras + nsclc and chemo is not working so desperate to find alternatives for him , but his cancer is kras + and I know only certain things will help .

Thank you xx 

Hi Mich,

Sorry I don't have my file of letters and reports to hand (I keep everything, but by now its rather bulky) for my full-on detailed diagnosis.

I'm not on Sotorasib, however, I'm on Pembrolizumab for NSCLC - tested 80% suitable, which seems to be enough.

I've not tried to second guess my consultants, they seem way ahead of me on things even though I track The Lancet, Journal of Clinical Oncology, National (USA) Cancer Institute, Immuno-Oncology News, etc. to keep up to date.

Kind regards
Steve

I am about to have my last treatment which is Pembrolizumab I have been on this treatment every 6 weeks for 2 years, my health has been amazing on this treatment no side effects what so ever.  When I started this treatment I was not told it would be for only 2 years.  My cancer is in my chest wall.  It hasn't moved since being on the treatment.  I had 10 radiotherapy sessions and 4 chemotherapy, then started on the Pembrolizumab.  I did ask the question what if the cancer starts to travel again and was told I could try another chemotherapy.  I am feeling a little anxious about finishing the treatment.  I have been told I will have regular ct scans as I have been doing for the last 2 years.

I've just read the posts from 2020 on this subject of two years only for immunotherapy.  I have just finished 2 years of penbrolizumab and although not a cure I have remained stable and been able to lead a fairly normal life because of it. I have now also been told that my treatment is finished and my immune system should be able to take over.  Trouble is 12 weeks down the line I feel that I am going downhill and many of my symptons returning.  I am due a CT scan in the next couple of weeks so will soon know the outcme. I was wondering, though, if any of the people in this link have any further information that I could use when seeing my Oncologist.