Receiving news on results of Genetic testing.

[Georgie1]

Last Friday evening, my Oncologist called to let me know he had received my results back and I proved to be Positive for the EGFR mutation. He was happy about this. So he told me to come in and see him at the hospital this morning at 11am. Got there and the waiting room was full and people were waiting in the passage way as well. Anyway, after a little more than 2 hours my name was called out to go and see my Oncologist. He asked how I was, I said I was good. That I was eating better. He seems happy with me and my outlook!

He informed me that I was his first patient to be proven Positive and that I was lucky. He then explained about he tablet he was starting me off on. It's called Iressa. I take 250mg. Every day until the cancer has shrunk or virtually gone! He will give me another scan in 3 months time to see how things are looking. I have to go and see him every month, and to pick up my tablets.

The cancer hasn't spread anywhere else besides my lungs, another positive! My Pericarditis is also much the same. No change. So I am feeling happy with visit today.

If anyone else has had this treatment I would appreciate hearing about it.

Many Thanks for all your messages.

Georgina x

[nancyjane]

hi georgina

my 87 year old nana also tested positive for EGFR. and is on day 31 of taking iressa.

we was delighted she was able to take it as it is less invasive than chemo. just praying it works.

so far so good. only side affects she has had is very itchy and dry skin on her head and back. her blood pressure is a bit low and her white cell count wasnt great at clinic last wednesday but that may have nothing to do with the drug.

she is stage 4 with spread in the lymph nodes and malignant plural infusion. we was given 12 to 18 months as a prognosis .so she is taking it hopefully to controll symptoms and may be buy her some time.

we are trying to stay positive and she is doing so well considering how advanced the cancer is and her age.

wishing you all the very best

regards

nancy jane x

[Georgie1 in reply to nancyjane]

Sorry to hear about your Nana. Hope the tablets will work for her and that you all stay Positive! That's important.

Please keep up dated with your Nana's progress. I will keep everyone up dated with my progress with these tablets.

Lots of luck to you all.

X

[chelemc]

great news georgina! im really pleased for you x

[Georgie1 in reply to chelemc]

Thank you! It's helped my family and friends as well as myself today. X

[willowtree]

Hi Georgina,

That is really good news. I am really pleased for you. I have read really positive stories on here and other sites of people taking Iressa. Good luck.

[Hidden]

Hi Georgie,

that's fabulous news. I was the first person in my area to receive Iressa on the NHS, that was 16 months ago!

I am stage 4, T4 N1 MXa. My main tumour was 11cms, I also has a malignant pleural effusion. My first scan was done 6 weeks after treatment commenced, is showed a 20% reduction in tumour size and no pleural effusion. The next scan I had was 6 months after that, the tumour had then completely collapsed and was immeasurable! my latest scan which was after another 6 months showed the same. I now see the oncologist every 3 months, I still have to go every month to the chemo unit for my Iressa though as pharmacy will only give me 28 tablets at a time! (its expensive and they don't want to issue 3 months supply in case I pop my clogs! I say that lightly as that's not about to happen lol) I did manage to get 6 weeks worth though before my holiday as I said in needed some in reserve in case there was another volcanic eruption and I got stranded in the USA! I usually get an xray in between too.

As for the side effects, initially I had acne type spots on my chin, about 30 everyday! Nothing that couldn't be covered with make up. I also had some diarrhoea and a few tummy cramps. I had had surgery thought (a thoracotomy, I was open and close, nothing removed apart from sample for histology, they had thought before the surgery I had unresolved pneumonia) so I was also on Morphine and other meds to stop the morphine from making me constipated. So for me it was trying to balance the effects of all the meds. It also affects your hair, it does grow like typical chemo hair, wavy! That includes eyelashes! I can't say I have suffered from fatigue, there doesn't seem to be anything I can't do that I did before. I go to the gym, walk alot, and on the whole my life is pretty much 'normal'!

These side effects lasted 6 months and then stopped. The only thing now is my skin is a bit dry. I use Aveno (available from boots) for that. My hair is growing much slower about 1/4 inch a month. I still have it coloured though every 6 weeks at the hairdressers with no problems.

One thing about Iressa is that there are no longevity studies. I was told the average for progression free survival was 13 months. That's what is quoted to you. However they only followed it up for 2 years to get it on the market! That means the 13 months is an average of 0-24 months! This is good news by the way. It means that they don't know how many people are surviving longer, and believe me there are quit a few. When you test EGFR positive you can also have one of the following 'Exon' deletions Exon 18, 19, 20, 21 22. I have the Exon 19 deletion, this one responds very well to Iressa. On the whole people like me who were one of the first and the ones from the initial trials will set the future stats. As yet they just know how long it will work for but its looking good!

Here's to a bright future Georgie, welcome to the Iressa club!

love Lyn x

[suesal123]

Hi Georgie,

I too have tested poitive for EGFR and I am 3 weeks into my treatment on Iressa. So far the only side effects have been a dry itchy scalp and a very spotty chin & back. Other than that I feel absolutely fine and very optimistic the more I read about this treatment.

The spots are a small price to pay in comparison to the alternative of Chemo. I have my first visit back to my oncologist this week but not expecting too much as it is very early days.

All the best

Sue