The Roy Castle Lung Cancer Foundation
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My Mum - an update

My mum has non small cell adino carcinoma, she was diagnosed in November, which was a massive shock and has left us all reeling. She's had a rough time since, with biopsies etc. She started chemo in Jan. but had a terrible reaction and it also didn't work so she is now on Tarceva, as of 3 weeks ago. It's not making her anywhere near as ill, but she does have a chest infection and at her appointment today found out there is fluid on her lung and she is very anaemic. She is having a blood transfusion tomorrow and her lung drained on Tuesday. I'm assuming this is quite common, but it is still hard to see her suffering. We're hoping the two procedures will really help give her a boost as she has been getting very down due to the constant pain etc. Does anyone have any experience of Tarceva? It's nice to get some of this stuff of my chest so you may find I am on here often now I know there are people out there who will understand.


2 Replies

Hi, I am on Iressa which is essentially the same as Tarceva. I was diagnosed with NSCLC adenocarcinoma too, mine is stage 4. I have been taking Iressa for 12 months now and so far am doing very well, there are a few side effects which are minimal compared with traditional chemo and for me all but the dry skin only lasted about 6 months. My cough and the fluid around my lung went within weeks of me starting the Iressa. My main tumour which was 11cms was immeasurable after 7 months and not of the mets could be seen on the CT (the mets were seedlings in the same lung) I am due for abother CT in May so fingers crossed the Iresssa is still working.

I am fit and active, I go to the gym, walk for miles there is nothing really I can't do. There are lots of really positive stories for TKI's like Tarceva and Iresssa and people living for many many years. There have not been any logevity studies done on these drugs though so you wont find numbers of years of survival published anywhere. I am also on a forum called 'Inspire' most people on there are from USA but there are many stage 4 survivors on there who have been on Tarceva for 5 years plus. Being positive about thisand keeping active is also key, many of the long term survivors have this in common,so help your mum to be positive and encourage her to keep active and hopefully she will do well.

take care

Lyn xx


Hi Lyn

I have read your response to my Mum, who was really pleased to hear such positive comments. She had a blood transfusion today so is very tired, but remaining upbeat. At the moment she has no energy but she is not the type to sit still if able and I know as soon as she feels well enough, she'll be up and out of the house. She told me today that she found another lump on her leg a few weeks ago which had been growing but that it seems to be smaller now, that has also given her a boost. She is due a scan in about a month's time, maybe around the same time as you. I will keep my fingers crossed for you also!

My Mum also has deposits in her chest, small deposits in her right lung (main tumour in her left) and has a lump under her arm, which she is due radiotherapy on. She has had radiotherapy on a lump on her side and on her pelvic area already. Her tumour is referred to as a T4 tumour although she has never been told what stage she is at. I was told about the T4 tumour by her nurse, but have not passed this on. Last September I was on holiday in Dubai with my parents, partner and our 2 daughters and my partner's daughters. You would never have known what was going on inside my Mum, she looked and felt amazing and had my 2 1/2 year old in with her and my Dad to help us out. This is a very scary disease!

Sorry if I have rambled on, too many thoughts!



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