cancer in the lining of my brain - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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cancer in the lining of my brain

rottenrunner profile image

hi everyone just giving you my latest update, and despite this I'm still feeling so positive despite my oncologist thinking I'm now on the back straight of my life, as it's got in the lining of my brain and is so hard to get to, a couple of weeks ago I thought I had a mini stroke, my left side went numb, again a few days later, stroke, Neuro and oncologist consultants looked at my brain scans and decided it was cancer and now very little they can do, I'm at home again now after 8 days in hospital, I will be having some radiotherapy, but to stop the tingly episodes I'm having, not to cure or extend life, I'm 54, married to Sonia for 32 years soon, 4 kids, 6th grandchild arriving soon, I feel greedy to expect any more, but still, surprisingly, feel I will outlive their latest life expectancy, again, I just feel too good in myself, 15 months ago I had a year, now it's 3 months, update in May all being well lol, life is a journey live it well and we will all go in the end, life is a cycle it goes round and round, enjoy it I know I have and I will have another smug grin if i out do them again, as I expect too, take care, always 100% positive i feel too good to be dying from this #Followmylead David's story, wishing you all the best with you and your families journeys with cancer

lots of love

Dave and Sonia xx

looking forward to taking part in another campaign later this year, I'll never take doctor's seriously or life lol, I feel happy and hope to spread a little happiness with this post not dwell on the negative always take some time out to be happy!

23 Replies

The US actress Valerie Harper lived 6 years with her leptomeningal disease. They treated her with pulsed Tarceva (Erlotinib). Ask your doctors about it also whole brain radiation can be given.

rottenrunner profile image
rottenrunner in reply to Denzie

thank you Denzie will look into that but still feel too in myself to accept their diagnosis I prefer mine xxx

Your positivity is inspirational, all the best to you, you’re a fighter that’s for sure! Don’t let it beat you! X

thanks LewLew19 definitely have every intention of being here for a long time yet, just feel too good to be too ill from this take care xxx

Special blessing and prayers to you.

rottenrunner profile image
rottenrunner in reply to 1968

thank you 1968 xx

I am sure with such positivity, determination and so much to live for you will continue to defy your prognosis. Thank you for sharing your post and keep happy and enjoying life.

Sending best wishes to you and your family.

thank you Manninmaid I feel good in myself and fully ready a weird feeling under the circumstances but definitely up for the challenge thanks again and all the best xx 😊👍❤

Thanks for sharing and thanks for the positivity and the wonderful smile! <3

thank you lucanus15 😊👍❤

Such a wonderfully positive post!! Stay strong love and best wishes to you x

rottenrunner profile image
rottenrunner in reply to Elt79

thank you Elt79 😊👍❤

Keep going with your positive attitude xx

will do Kalilou2 thanks 😊👍❤

Amazing attitude to have. I send you lots of love and positive thoughts in the months ahead and keep fighting that fight you've got this👊👊👊 xxx

rottenrunner profile image
rottenrunner in reply to Bev86

thank you Bev86 and never giving up 😊👍❤

Thank you for your inspirational post Dave, it is great to read and thank you that you are sharing such an important part of your life with us all on the forum, this is bound to encourage a lot of people living with lung cancer.

Continue to enjoy what you have with your family and friends and keep us posted.

All the best

The Roy Castle Support Team

thank you and love the support we all offer each other on here and was great getting involved with follow my lead thanks

Dave 😊👍❤👊

Great approach and attitude - long may it continue.... many outlive others' predictions and hopefully especially as you're feeling well, you can continue to wring as much enjoyment from life and your family every day. Love the t-shirt slogan - it says it all.... take care

thanks JanetteR57 my son made it for our first cancerversary party I love it hoping to get back in the pool soon too thanks again and wishing you all the best😊👍❤👊

You got this! Come on going! Peace and Love to you.

thanks Marshmallows28, oh yes, last radiotherapy tomorrow and feeling good in myself, 😊👍❤👊

Hi - sorry to hear of your progression - I am in roughly the same position - lung was controlled with Afatanib but then cancer moved to brain, Leptomeningeal disease (as you know not great prognosis). Answer for me was to move to Osimertanib, which can cross the blood brain barrier and control the brain disease as well). Think it is working and will get results of MRI next week - only downside is that works for a max of 16 months - but worth a look in your case? - In order to qualify for the drug, normally very expensive, you are supposed to test positive for the TM 90 mutation, which is difficult in the brain as not as amenable to biopsy, but Astra Zenica do have a discretionary programme that I was able to get onto - worth a try in your case? - being treated at Guy's Cancer centre in London which has a good relationship with the company - best wishes Andrew

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