Hello

Hi stargem, and welcome to the group. There are some people here who have had good results from immunotherapy alone. Hopefully some one will be along soon to share their story with you. 

Hi Stargem,

I too have stage 4 adenocarcinoma NSCLC and was given a prognosis of 3-6 months without treatment. I was put on immunotherapy (Pembrolazumab) as a first line treatment so unlike you I have not had chemo. in September of this year I completed my 2 year course of immunotherapy. I have had good results throughout those 2 years with both reduction and stable results. I am now on watch & wait, my last scan since finishing my treatment showed stable disease still in one tumour and further reduction in the other, so so far so good. There  are other people in the group, some like yourself who started off on chemo then completed their 2 years on immunotherapy and are still well with stable disease 2 + years later, I’m sure they will too be along to share their story with you. I hope this goes a little way to stop you worrying too much, although worry is and stays with us all, I doubt anyone will come along to say any different. I wish you well with your treatment.

Take care

Hi Stargem

Hello to you too but a shame we have to meet under these circumstances...

I had similar initial treatment (clicking on the mug next to my username will take you to my bio) but 4 cycles (AdvSt4SCLC), which was the most they would give me as they explained that the chemo element is like a shock & awe tactic and the immuno is much more targeted.

So, you've managed to get thru 3 cycles and had a really good outcome so far, let's hope you do as well or better on the immuno alone - I can tell you that I am doing really well (touchwood...) on just the Atezolizumab every three weeks and continue to see reduction 8 months on and I will be having my 13th infusion on Xmas eve (Yay! Merrry Christmas!!!). If you are responding this well, then hopefully you will continue to do so...

Given your treatment to date, it sounds as tho' you are soon due to have scans and assessments - please do not overthink the situation as many (including myself) have, as this is utterly counterproductive. Try instead to concentrate on positives like maintaining a healthy diet and doing whatever exercise you can.

My main aim, knowing that I cannot defeat my cancer, is to make it wait as loooonnnnnggg as possible before I am delivered up!!!!! (HA!)

This is absolutely the right place to gain insights from many, many souls who will do their level best to help guide you gently along our new journey - they have been great with me...

You may also like to take look at the "Incorrigibles" (more formally known as "Living With Incurable Cancer" forum), as everyone there is kinda singing from a very similar hymn sheet...

So, ask any questions you feel are relevant to your situation, slam in a rant if you need to...

In the meantime,

Stay Strong

SiT

Hiya Stargem, I am also stage 4 adenocarcinoma now. I was given less than 12 months without treatment in August 2019. I managed 4 cycles of chemo with immunotherapy (Atezolizumab) before the immunotherapy had to be stopped due to pneumonitis back in February 2020. At no stage did my tumours actually shrink. From Feb 2020 I was stable until my last scan last month and I’ve been told my next option going forward  so it ain’t over yet! Chemo induction in conjunction with immunotherapy work for a whole lot longer than science has enough data to analyse at the mo because it’s all so new! Plus - we are all different, our mutations are different and respond in different ways. Immunotherapy is way ahead of any old chemo promises so you grab that bull by his horns, let him know who’s boss and get on and show him who’s really in charge! Live your life! Don’t waste it worrying xx

Stargem Hi There. I am also stage IV NSCLC, when diagnosed October 2015 !!! they said about 12 months left, had chemo who did not work then immunotherapy, since Aug 2016...still on it now ( i am in Australia) still alive and well...so don't think about a time frame..oh and i did not had surgery because is was already in lymph nodes and later brain. Pet

Hi Stargem

I was diagnosed with stage 4, inoperable, metastatic NSCLC 2018, my cancer is incurable but treatable. I was treated with a combination of chemo / immunotherapy every 3 weeks for the first year followed by just immunotherapy every three weeks - now every 6 weeks. My tumours have reduced & are stable! The side effects from immunotherapy for me are mild compared to chemo! I too was concerned when my chemo stopped but I am (so far) feeling well! 

Hello.  I am a new nsclc patient and as yet have to learn my treatment.  I have been told my condition is incurable and I am looking through for people like me and wondering how they cope?  I am still in denial ! Regards mary

Hi lady Mary and welcome to the group, but sorry you have found yourself here. The early days are so very scary., and it’s certainly a shock to be told you are incurable. But this doesn’t mean you are not treatable. There are lots of us here in the same position. Once you get your treatment plan, you will start to feel better, because it is the start of your journey to take back control. 
Take care 

Hi Mary

The way I cope: I’m living with cancer & focusing on treatment, healthy eating, exercising, mindfulness so that I live the best life I can for as long as I can! 

take good care of yourself 

Thank you Lilie.  I am sorry to learn so much fear and heartache out there.  I don`t know what treatment is available to me until the 23 December.  This is a world I never imagined I would be in,  and although I hate to see others suffer, it helps to know I am not alone.  I recently qualified as a soul midwife so that I could help others who are terminal and no sooner than I completed!!!  I am told constantly that I am a strong woman!  I don`t feel strong I feel broken .  I try to remind myself there are people of all ages dealing with this and I am grateful for the 70 healthy years up till now.  I do admire your comments and hope that in my own time I can come to terms with what lies ahead.  Thank you and good luck on your journey.  xx