Not so good/not so bad

[annecarmel]

I was diagnosed with stage 4 NSCLC in November 2010 and placed in Iressa in January 2011. By January 2012 my tumours had reduced by up to 60 percent. My scan in April this year showed that one of the tumours had grown from 8 to 13mm. The May Xray showed a fuzzy area at the base of my right lung.

The Xray at todays hospital appointment showed the fuzzness had reduced in area. My doctor is sending me for another scan prior to my July appointment.

He is keeping me on Iressa for as long has he believes it is dealing with the majority of the cancer cells.

Should the situation change, he says, there are two possibilities - one that is already approved for use in the NHS and one that is undergoing trials. He will submit for whichever he thinks as the best chane of success.

Individual doctors are at various stages on the Iressa learning curve. As my doc has attended seminars in the USA and Italy I'm happy to go along with his judgement.

I am very lucky in that, through posting my email ([e-mail]) on the Health Unlocked blog, I'm in direct contact with Iressa users in Wales, Ireland, England and Spain who have become personal friends are are very supportive.

Two have told me of cases in which tumours began to grow and then stopped. I'm hoping it will be like that in my case.

If not, I'm grateful that I have had 32 months of life (so far) in which I have been able to achieve many of my bucket plans and for the email friends I have discovered.

Reading the blogs, and support I've had from the Roy Castle Lung Cancer Foundation, have also been a constant source of comfort.

There are so few of us Iressa users that it is important that we stick together and swap stories, both good and not so good.

xxx

annecarmel

[Hidden]

Hi

Here's hoping that whatever treatment that you go on to will keep things stable for as long as possible and let you start a new bucket list.

Good Luck

Rabbie

[Hidden]

Unfortunately I am not an Iressa user and am on the bad boy chemo. Like you I have had periods of elation where tumours have shrunk and then come crashing down to be told they have grown again and in my case new tumours have developed. Its inspirational that you have filled 32 months doing things you wish to do. I am 15 months down the line and have made a 'wants, likes and needs' list that I am crossing off. Very slowly due to chemo side effects. I wish you all the very best. Trials and treatments are moving very quickly. Who knows, we may have many more years ticking off those lists. Lets keep our fingers and toes crossed for all with this dreadful disease. Keep in touch. I hope you continue to get a lot more 'good' news and less 'not so bad' x

Tallulah x

[sheeni61 in reply to Hidden]

HI, I too ave just started chemo due to the cancer returming I wish u all the best

[LorraineD Partner Roy Castle in reply to sheeni61]

Hello Sheeni

I hope your chemotherapy helps reduce your symptoms. Sorry to hear your cancer has returned. Hopefully you have had good support for your clinical team. If we can help in anyway please contact us,

best wishes

Lorraine

on behalf of the Information & Support Team

[woozer]

Hope everything keeps on shrinking ..... I think your positive attitude will help you too.

Take care and have fun in the sun if you can find some !

Woozer

[suesal123]

Here's hoping that the Iressa you are on keeps working.I started on Iressa and had great initial results, but after 7 months my tumour started to show progression so I am now on IV chemo of Carboplatin/Pemetrexed. It is not as bad as I had expected and does not seem as bad as some other chemo drugs around.

Like you I have been told there are other treatments down the line so here's hoping that we have many more options for the future

Sue xx

[Joewarren]

Hi Anne

we are all on a rollercoaster that we can't get off I know, but each month that we survive is another month that a break through could happen, after all 5 years ago the NHS weren't using Iressa and really didn't offer more than the hope of life for more than 6-12 months for a stage 4 diagnosis. I know you probably already know this and am not trying to " teach my grandmother to suck eggs" as the saying goes, all that any of us can do is keep believing that 'hope' is real, after all a few years ago that first 'Iressa user' turned on a light for those of us lucky enough to be EGFR positive and hopefully that light will lead to another one and another one

take care

Joewarren

[Harrypalmer]

Hi, I'm not on Iressa and I don't know the criteria for being given this drug, is it because it targets just one tumour, I have widespread Mets so perhaps that is why I'm starting Carbo/Pempt tomorrow and that Iressa wouldn't work on me. I'm waiting confirmation if I test positive for EGFR mutation which I believe is quite rare and was told by my oncologist that I would be her first!!! I hope it keeps working for you and that you keep on ticking things off from that list. Moni xx