Newbie to this group

Hi little fi

Not sure what immunotherapy you be offered. I tested positive for the one i had my PDL1 was low at 8  the higher than number the better in regards for a good out come.

I had two year of Keytruda and finished on the 20th Dec 2018 have had stable ct scans results since, due another scan tomorrow so lets hope it continue's.

Every one reacts differently , keep us updated.

Mine is Lung C

Take Care Ellie xx

Hi Ellie, thanks for explaining that to me. I’ve just been trying to look it up and it’s all mumbo jumbo to me! I’m just so happy that I can have the immunotherapy.

There are a couple of trials I can go for. Keytruda + a combo or Cemiplimab + hpv vaccination which is the one I’m thinking of going for. My surgeon says they are seeing good results so far.

I’m so pleased for you that you’ve gone getting on for 2 yrs without treatment and remaining stable. 
Good luck for your scan tomorrow. You must be feeling a little anxious now. I hope you don’t have to wait too long for the result.

All the best

little fi  x

Hi little-fi welcome...i live in Australia, had immunotherapy now for over 4 years!!! Nivulumab...for lung cancer, could not be operated as it had spread, my sell by date was 10 to 12 months...that was October 2015!!!! So i hope your's will work for you to . Don't give up, we are may uncurable but not dead yet!!!

Pet

Thank you Pet, that is really good news. Long may it continue for you. I’m feeling hopeful and will try & stay as healthy as I can.

Best wishes to you

little-fi x

Hi little-fi.

Yay, we can be newbie sell by date buddies.

Best wishes

Stuart x

Hi little-fi

Welcome to the group that no one in their right mind ever wants to be a member of! Well, it's true isn't it? Once you're here though you never want to leave it, lots of good friends that are nice to you and say the right things 

You have adopted the right attitude to your sell by date, it's true that some have been told that they had just a few months and are still around a few years later and still going strong.

I have a rare incurable blood cancer, MDS and there's an MDS support group that I belong to, nothing to do with MacMillan, a separate support group so I know a fair amount about my cancer. I was diagnosed in March 2015 which was a shock, I didn't know that what I have is so serious. I spent the next couple of years in a bit of a haze, no prognosis, my Haematologist just ssys that different people go down at different rates. I'm now enjoying life, especially my garden. I have a project going that my wife has spent her time away from school for the last 5 months helping me. There's a gardening thread here where you'll see some of my my work and also the pleasing results.

I'm afraid that I don't know anything about your cancer although if a nurse tells you that she's pleased with your numbers and you're getting on a clinical trial then that is good news and keep us informed of how you're doing, we love good news. 

I also have a rare hereditary blood disease called haemachromatosis that my parents went to their graves unaware that they had it because it wasn't discovered until the 1990s. It's colloquially known as the Celtic Curse or iron overload. My wife would probably agree with the statement that I'm a rare one ha ha, but in a good way though, I hope! Lol!

Ok, I'm going to try to get back to sleep now, I am kept awake every night by back pain that has put me in a wheelchair, the only way I can get around pain free. Almost. Sorry for such a long post, my posts do tend to be.

Take care and stay safe little-fi, I hope to chat again.

Tvman xx

Haha, that made me laugh Stuart! 
little-fi

Thank you Tvman for the lovely, warm welcome. I’ll be a regular on here I’m sure.
I will look out for your posts re: your garden. I bet it keeps you busy as well as giving you great pleasure seeing what you & your wife have achieved. 

I’m sorry to see you have the Celtic Curse as well as MDS. You sound very positive about it all though. 
Thanks again.

All the best,

little-fi x

Dear @little-f

Sorry ti hear your news. When I got my diagnosis I was told that I would never again feel good as that day. No bedside manner eh? 
i started reading and found a new doctor. I was given 24-36 months to live. Its been almost 7 years. I just wrote Stuart a long message that is also for you.

welcome! You will a lot of kindred spirits here. Do you garden?

Hugs to All

Millie

Thanks for the welcome Millie,

Unfortunately I live in a flat so I don’t have the luxury of a garden.
I did have a static caravan for quite some years but we threw the towel in last October. I enjoyed pottering about in our little garden there but was limited to what we could grow as we weren’t there enough to look after it well.

I sew & knit but not as much as I’d like to. Hobbies take up a lot of time.

 
We’ve recently been made grandparents (our first) and this little man has given us so much pleasure,it has taken the edge off my diagnosis.

I’m so glad I joined this group too as it has given me more reason to not give up hope especially when I read posts like yours. 7 years and still going strong- that’s fantastic!

I had so many plans in my head regarding the future that all of a sudden were wiped away on the day my consultant told me the news. I’m now thinking just to plough on & stop trying to organise for something that might not happen for many years. There’s nothing to say that I won’t be one of the 5% that make the 5 years & beyond just like you! 
Take care Millie

little-fi x