My mum went for chemo round three and told them she is having horrific headaches, nose bleeds and blurry vision. She has been coming off dexamothzone (not sure of spelling) its the steriod that she has been on since she was diagnosed and they said she may be coming off the drugs to quickly or.............................her non small cell lung cancer spread to the brain......

When she was first diagnosed they said there was a lump in the left hand side of her neck?! Doesnt that mean that is the secondary? how does it work?

Please help me does this really sound like it has progressed already? I cant cope I thought Lung cancer was bad and now we are faced with this prospect....

life is so so so cruel...has anyone else experience the above or have any advice?

thank you

smile28

It does sound as if they want to check out whether or not there has been spread to the brain, and an MRI should certainly show that. They will look, for example, particlarly at the parts of the brain which relate to her symptoms - eg, the section that deals with vision, to see if there is a secondary tumour there that might be causing her blurry vision.

If she is taking dexamethasone (just call it 'dex' - much easier, and it's the recognised shortform name for it!) for her lung cancer symptoms, it will also be having an effect on any brain tumours she may also have - ie, if you have brain tumours, you are often put on dex because it helps with the symptoms.

What dex does, being a steroid, is to help the brain get rid of the excess fluid that can leak out from any brain tumours. This fluid is hard to get rid of in the brain because it's encased in a solid skull (unlike the fluid from cancer cells elsewhere in the body), and if the fluid builds up in the brain it can put pressure on the healthy brain tissue (think of a sponge soaking up with water) and that can cause the symptoms  - so the underlying problem is the brain tumour, but the immediate problem is the fluid build up (it causes a rise in ICP - intracranial pressure, pressure inside the skull).

So, if your mum did have brain tumours, and was already on dex for the lung tumour, then it could be that the dex was also helping her brain keep ICP low, so coming off dex might be leading to her brain symptoms, where the brain tumours had been masked by having the dex for her lung cancer.

So, it could be that IF they see some brain tumours then they may increase the dex again, to deal with the symptoms, and make life more comfortable for your mum.

As for treatment, dex can't actually get rid of the tumours in the brain, but it could be that your mum will be sent for radiotherapy on the brain, to reduce them or stop them growing. There is lots of information here about brain radiation, and a lot of support, so I hope you can find that easily (We talk Brain Tumours is excellent).

As for whether the lump in her neck is a secondary tumour, well, I would say that until it is biopsied it isn't possible to say - I know when we have cancer we tend to think that 'everything' is part of the cancer, but it might be completely innocent.

As for the cruelty of cancer - yes, a cruel, pitiless disease. BUT with treatments improving all the time, we have to turn to whatever is there, and hang on like crazy.

All the best at an understanbly very worrying time.  Julie

Finally some good news.

It hasnt spread to the brain!!!!!!!!!!! We came home drank champers, ate dinner and talked like the olden days... Cancer wasnt on the list of conversational topics! Three weeks before next whole body scan and results so for now we will enjoy the moment of good news.

Thank you for your reply. It really is touching being on here and it helps so much.

Much love

XXXXX

That's wonderful - well, well worth a bottle of champagne!

Did the docs come up with any explanation for what was causing the troubling symptoms, and was it just coming off the dex?

In the meantime, as you say, we make the most of any good news that we get along this difficult and anguished journey, and this definitely does seem to be one of those moments for you -

Take care, regards, Julie.