Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

No Evidence of Active Disease

Cherabell
Posted by

I was told yesterday that after almost two years since diagnosis, I reached ‘No Evidence of Active Disease’. I couldn’t be more grateful to the everyone who helped me. I’m  thrilled to have got to this point. Yet I keep crying. Hopefully this will pass.

Anyway, tests will be repeated in four months, but for now I will enjoy. I just wanted to let all you lovely people know as I don’t think anyone else can understand how I’m feeling.

flowerlady
Posted by

This is amazing news Cherabell! You must feel elated.

Xx

Flowerlady x
Tamencio
Posted by

Hi Cherabell

wonderful news I am so pleased for you. Take care xxx

Tamencio

Tinalay
Posted by

That's fantastic news, I'm over the moon for you! Have a good cry and then celebrate your socks off xx

Tinalay 
Alive
Posted by

Hi Cherabell, great news. I do indeed know how you are feeling. In April I was told I had gone from incurable to inactive. I walked around with a big smile on my face for weeks too. It is very emotional isn’t it? I have to stay on the Letrozole for life now, to keep it inactive, A small price to pay! Maybe eventually you will be told something similar.

It is a huge encouragement to everyone on here when one of us is able to give this sort of news. It is hope and a lift for us all.

You will slowly come back down to earth of cloud 9, and pick up on life again, just make the most of it and enjoy your new life.

love and hugs

Maggie xx

Johnty
Posted by

Dear cherabell, congratulations on your good news, now go and enjoy your life with a new spring in your step. After 2 long years there is bound to be a need to release a lot of pent up emotion, so let it all out, take a deep breath, then carry on putting one foot in front of the other and resist the temptation to keep looking in the rear view mirror, instead concentrate on the road ahead. Life is for living, loving and laughter.

best wishes 

jane

best wishes

jane

noswad1
Posted by

Hi  and , fab news from both of you. Would you consider adding your story to the Positive secondary BC stories thread on the Secondary Breast Cancer page on here? I'm sure that others would love to read your news.

https://community.macmillan.org.uk/cancer_types/breast-secondary-cancer/f/breast-secondary-cancer-forum/186433/positive-secondary-breast-cancer-stories

noswad1
Where there's hope, there's life!
Kym66
Posted by

Amazing news well done keep that smile going 

Kymxx

Kym xx 

Peggy24
Posted by

What wonderful news for you great to hear good news.

Keep strong and positive x

daloni
Posted by

Hi

That is wonderful news. Thank you so much for sharing it with us. I’m not surprised one bit that you keep crying. It’s been a traumatic couple of years, I’m sure, where you’ve had to face horrible treatments, horrible side effects and looked into chasm of your own mortality. I dare say you barely even recognise yourself when you look in the mirror.

For what it’s worth, I’d say that even though you have no evidence of active disease and have every reason to celebrate, you’ve still got a lot of recovering to do. I’d also suggest that it’s worth paying attention to this and treating it as your next project. 

So yes, please do celebrate and look forward. But don’t beat yourself up if you find you can’t - or can’t keep it up. I guess we all know the drill. Eat well, exercise in moderation, be kind to ourselves, practice meditation. I have found counselling useful up to a point and beyond that point I’ve found touch-based therapies such as massage to be more helpful in letting go of the trauma I carry in my body. 

You’ve had some really excellent news. Hang on to it but it’s going to take time and effort before you really internalise it. 

Xx

AP7
Posted by

Wonderful news, Cherabell. Let yourself cry, then celebrate!

(Hope this works!)

Graeme77
Posted by

I am in a similar boat - kind of.

My cancer recurred in October 2017 and spread to liver, adrenal glands, lymph nodes in my abdomen and there was a suspicious nodule or two on my lungs.

I was given the chance to try nivolumab an immunotherapy drug as one last hail Mary pass. Unbelievably i have had a tremendous response, with ky abdominal lymph nodes, adrenal glands lungs and liver now clear. 

I have another condition called sarcoidosis from which I have never had any symptoms, but does cause swollen lymph nodes in your chest. I now have slightly swollen lymph nodes in my chest.

Because of this, my oncologist is unable to tell me I am in complete remission, but in his words, he thinks these nodes are sarcoid but the only way to confirm is to open my chest and cut out the nodes and biopsy. 

So I'm kind of in a nice limbo (if limbo can be so described). My onc believes I'm in remission but can't say. 

I will be getting infusions for the foreseeable future once a fortnight and he sees no reason why these should stop. 

Anyway, Wednesday was the results of the 3rs scan in a row which showed the above results - I am scanned every 4 months so that's a year. 

When I think of the people I have met on here and IRL who have not been so lucky there is a tinge of guilt it has to be said. Just through pure chance and being in the right place at the right time I was offered this drug, and it has removed any visible disease from jy body (probably). 

anndanv
Posted by

  IVe just read your news and am delighted for you. It is a bit overwhelming on first hearing this fantastic news but I'm sure you will soon get used to it and only cry happy tears! I do hope this takes the weight off your shoulders and you enjoy life to the full ( in between regular scans etc!).

& I'm pleased to say, I am sharing the lucky boat with you, I also do feel a bit guilty sometimes but let's face it, we have no say in who these drugs work for or not. If I could, I'd make everyone NED ( no evidence of disease) wouldn't you?

Lets just count our blessings and enjoy every second of every day to the full!

Love Annette x