I am new to the Community and fairly new to the experience of having lung cancer. I was diagnosed with it at the end of August 2020 and had quite a rollercoaster ride so far. Surgery for it is not an option as I have two tumours in my right lung and both are already quite big and the cancer had already spread into two lymph nodes. I started immunotherapy in September and at the end of September they found out that I also already had a brain tumour which luckily the surgeon was able to remove at the beginning of October. The surgery stopped the immunotherapy for the time being and I only started it again last week. Currently I am not receiving any preventative treatment re the brain tumour, but going to have a MRI scan soon to check that really all of the brain tumour is gone. I found the last couple of months very scary and overwhelming. Thank you for listening xx
Welcome to our community although it would have been much better to have met under nicer circumstances...
If you click on the mug icon (very apt in my case...) next to my username you will be taken to my bio - many of us have written them so that others have an idea of our journey to date.
I was diagnosed in early April this year so I can understand if you feel you are still on a crazy rollercoaster ride - it does often calm down, giving you a chance to catch your breath and come to terms with your/our "new" normal...
You will find a wealth of generous and supportive people with a great deal of experience of our issues in this community - just ask and people will respond. Or just let out your worries and concerns, it can help...
May I ask, what stage are you at? Let me know if you want to share...
I hope you respond well to your treatment and use this community often.
Thank you SiT. I think I will do my bio in the next few days, it sounds like a good thing to do. It also gives me a chance to put it all in order. I was diagnosed with Stage 4, the tumour at the top is 8cm and the other one further down is 3cm, at least they were that size back in August. I expect them to have grown as I missed one treatment due to the brain surgery. My immunotherapy is normally every 3 weeks. Thanks again
So, as you can see from my bio, I am adv4sclc and incurable but... they are doing tremendous work keeping me alive and, for the time being, quite well (fingers crossed/touchwood etc...).
I too have 3 weekly infusions of atezolizumab (in, out & done in ONE hour...) which I can have for up to two years (if I make that, I will have outperformed my sell-by date considerably - HA! We'll see...).
So there is another forum for incurables (we prefer "Incorrigibles") and if that applies to you or anyone else, click on to my bio, scroll down just past friends, and you will see my member groups - click on "incurables" to have a mosey around...
Don't forget that cancer treatment is rapidly approaching it's "Golden Period" with ever newer more effective applications coming along all the time. Just a few years ago my own goose would probably have been very well cooked by now!!!!!
So, come regularly and look around, ask questions pertinent to your situation, you will find a wealth of experience willing and able to support you, even in dark moments...
Take good care &
Sorry for the late reply, was rather tired over the last few days, but managed to do and upload my cancer journey to my profile. So, if you want to have a look, just click on my mug, hahaha (I do feel like one sometimes).
I am on Pembrolizumab and it is supposed to keep me going for at least another two years, we will see. I have a lot of faith in the research the academics are doing and they are constantly developing and discovering new things. As a very good friend of mine said, 'medicine was never as advanced as it is now' and she is right.
I will have a look at the 'Incorrigibles' Forum, I like the name. My consultant made it very clear that we are looking at disease control rather than cure, hey ho, we take what we can get. It doesn't dampen my positivity or will to live and to kick Augustuses (I named my lung cancer Augustus, it helps me to deal with it better) butt big time!!!
So, you take care and stay strong too please and I hope to chat to you again soon.
Hi Sorry to bother you. Where is your bio so I can go into the incurables please
If you click (or double click) on the MUG icon next to my username that will take you to my biog then scroll down past friends and you will see the groups.
Otherwise, put "Living With Incurable Cancer" into the search box at the top of the page. You will have to sign up to post...
Hope that helps...
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