Hello,newbie here. I have been diagnosed with stage 4 nsclc after going  to the doctor with what I thought was a chest infection at the end of september. I am starting immunotherapy next week and wonder if any of you can tell me what its like

  • Hello Deso,

    Sorry you find yourself here but welcome to the group. It must be a lot for you to take in at the moment.

    It’s good that your treatment is mapped out for you so quickly! 
    I started my 1st immunotherapy infusion on 21st October but I’m on a trial which means my path might differ slightly to yours if you’re not on a trial. 

    I’ve had no bad side effects so far to speak of but appreciate it’s early days. The infusion itself didn’t take long at all- about 30 minutes and you’ll be monitored for a while after to make sure you’re ok. You might want to take something to read or an ipad to pass the time and some bottled water.

    My next one is on Wednesday so hoping that goes just as smoothly.
    Wishing you all the very best, keep us posted about how you get on.

    little-fi Blush

  • Thank you do much for replying,everything is as clear as mud at the moment. So much info after the devastating diagnosis. Its such a shock isnt it. 
    Your path is different to mine as I shall be getting it every 6 weeks. 
     Good luck with your trial,I hope it works for you. 
     Keep well

  • Hi Deso

    A shame we have to meet like this but a huge welcome - you have come to the right place for support and information.

    You WILL find that the first little while is like living on a rollercoaster but it DOES calm down...

    If you click on the "Mug" icon next to my username, you will be able to see my own journey to date...

    The chemo element wasn't very nice but the immunotherapy has been a walk in the park... 

    I now go every three weeks for just one hour in, out & done - amazing!

    Please remember that everyone reacts differently to treatment and you must speak and liaise closely with your CNS (cancer nurse specialist) - they have a wealth of knowledge and will give you the inside track on ay reactions (if applicable...).

    I very much hope that you respond well to your treatment and that you keep us updated...

    Stay Strong


  • Thank you Deso and the very same to you.

    A great reply from SiT! Blush

  • Hi Deso

    I have had 8 infusions of Pembrolizumab, which is an immunotherapy drug.I have been pretty lucky re side effects, but sometimes hard to seperate side effetcs  from symptoms!

    My diagnosis back in March was very similar, thought I had a chest infection, which I did but this was caused by the cancer.

    Hope your treatment goes well. As little-fi said, i only takes 30 mins, plus flushes either side, depending on busy the ward is.

    Take care

  • Hi all

    Deso, my hubby was diagnosed in Feb and gas had 4 x chemo plus immunotherapy   and is now on immunotherapy only ( Atezolizumab and Bevacizumab )

    He has had treatment 12 last week and like SiT the chemo was yuck but immunotherapy is do much easier. He has V cold hands especially finger tips, but that is the main side effect. Obv short of breath and coughs a bit  , but so much less than back in January . He has developed high blood pressure and is now on meds for that

    Sorry my reply has gone bold  , but I cut and paste the drug names as can't spell them,  and the text has stayed bold ....duh....need to learn to spell !!!!

    FYI hubby is 58, non smoking and was fit and healthy before this. Has lost a bit of weight but stable now.

  • Hi Deso

    i have been having immunotherapy treatment since January 2020

    Side effects have included aches and pains, more so at night, but nothing major 

    For the first few days after having treatment, I get flu like symptoms, sniffles and again body aches

    I had a scan in April and it was stable, which is good

    unfortunately I didn’t have another scan for six months, which was a few weeks ago, but when I had my telephone consultation with the oncologist, the results weren’t ready, so I have to wait a few more weeks.

    Hopefully things will be the same or better ( fingers crossed)

    I hope your treatment goes well, without side-effects and you get excellent results

    please keep in touch and let’s us know how things go

    “ Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning “(Albert Einstein)

  • Thank you all for replying to me. I hope your treatment continues to go well. This forum really does help to take stock of everything

  • Well I went last thursday for the immunotherapy but overnight it seems the tumour is pressing on the superior vena cava causing swelling to arms and both sides of neck. Breathing is a lot more restricted too. After waiting hours for them to decide the next steps it was decided to start on the pembrolizumab. 
    I have a telephone appointment beginning of december,making sure I have my bloods done the day before. Then back for second course on xmas eve. 
    Still have mixed feelings because II’ve finally started the treatment but at the same time feel totally abandoned as to what is happening with the superior nova cava. 
    Anybody else been or dealing with this

  • Hi Deso

    That sounds scary and nobody can advise or suggest anything to help with the swelling? 

    My last scan showed that the tumour is pressing on my windpipe and some other issues that I can't remember. Part of my lung has also collapsed. Do you have a lung specialist nurse who could help. They are usually very good. Isn't it rubbish having scans, treatments and telephone appointments near Xmas

    Take care