Not the news I wanted to hear :(( - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Not the news I wanted to hear :((


Just returned from my oncology appointment, the one I have been waiting for to get the results of my latest CT scan. Not the best of news....I have some tumour progression. I knew It would happen eventually and did expect it as I've been coughing for the last 3 weeks but still it was a shock. I've been feeling invincible, as if I could be the one who would have years on Iressa, I have managed 20 months progression free but now its back :(

So what's the next step? As some of you know, I was one of the first people to have Iressa on the NHS so what ever they try on me is early stage guesswork to some extent. There is the IMPRESS trial looking at whether to completely switch to doublet chemotherapy (carboplaitin/Alimta or cisplatin/Alimta) or whether to continue with the Iressa plus the doublet chemo. Evidence is saying keep with both as it is only a % of the cancer cells that have become resistant. This is not a 'standard' as yet though so at present it's a complete switch then, if it works start another TKI like Tarceva as a third line treatment. There is a drug called Afatinib which will be used as a third line but at present it is not approved by NICE.

For me, they are giving me 2 months to see how much/fast the tumour is progressing. They will then switch my treatment. This gives me 2 months to amass as much evidence as I can for me to say what route I want to ho down even if I have to pay for it.

For any one else taking Iressa, please see this for what it is and try and get something positive out of it. I'll do my best to pave the way for all of us.

Take car ll and wish me luck


25 Replies

what a shame, you certainly have a good attitude. I really do admire you and you have inspired me from the beginning when I joined this site. I wish you all the luck and love for your future treatment. :) xx

Hi Lyn

Disappointing news to say the least. You're such an inspiration to all of us on this site and elsewhere, and hopefully you'll feel the support we all have for you right now.

It's good that you have more medical knowledge than the majority of us (I presume) and this will help you make the right decisions for your future treatment.

Very best wishes,

Love bill xx

Hi Lyn,

I an so sorry to read about your disappointing news.

You have been my inspiration since I started on this site in July, as you may remember I am also on Iressa, and I am waiting to get the results of my first ct scan on the 17th. I too like you feel invincible. I know you will get a lot of information on how to progress through this.

So you can make the right decision for your future.

Sending you my very best wishes.

Georgie xx

So sorry to read this Lyn. Not the news you deserved. You have been such a positive inspiration for us since we started our lung cancer journey! Living life to the full and staying so focused. Don't lose that positive attitude. You will find the right alternative treatment Lyn! I don't know anything about Iressa or the other options you've mentioned but I do know that your determination and positivity will help you make your choice and get back on track. Thinking of you! And thank you again for being such a support x

Hi Lyn,

I wish you all the very best,I have the pleasure of knowing you personaly, you are a fighter do not give up. As you know my circumstances are different to yours. There is support out here. Our little support group will grow and we can work together.


Hi Lyn.

I am so sorry to hear your news,how I wished things could have been different regarding your results.I am hoping and praying for you that there are many options still available for you that can reverse the tumour progression.My knowledge of the technical side of treatments is pretty limited,so I have little insight on options for you,best I can do is to cheer you on from the sidelines.You are such a ray of hope for so many people with your positive attitude and that unbelievable energy you have in being a driving force for advocating on lung cancer issues,I so admire the work you do,wishing you every success as your treatments continue.

Hi Lyn,

Sorry to hear your news, you are an inspiration to all........research well and make your choice of treatment.

Best wishes and positive vibes to you

Love Debs xxx

So sorry to hear this news, my thoughts and prayers are with you.




Hello Lyn, so very sorry to hear your news. If anyone can fight this you can, you are a true inspiration and ignite the fight in all of us. I never tested positive for any mutant genes so was put straight onto chemotherapy first with carboplaitin, pemetrexel and avastin for 6 sessions and am now having indefinite chemo with just the avastin and pemetrexel. The oncologist raves over avastin and although the last scan didn't show any decrease in the tumour it has stopped the progression. If I can be of any help at all, please let me know. My thoughts and best wishes are with you. With love xxx

Dear Lynn,I am so very sorry to hear your have been my inspiration since we first started corresponding.It is difficult to know what to say,but having met you I don't doubt that you will fight this.You are such a positive girl ,and hopefully all the research you have done will help you to continue with the next stage.As you may remember I started Iressa two months after you and I get the results of my next scan on Mon.17th.

You are in my thoughts and prayers.

Mags xxx



Sorry to hear news of the last scan results. You and yours are in the team's thoughts. Hope your research gives you positive treatment options and I am sure your medical team will work with you. If we can be of any assistance do get in touch,

Lorraine on behalf of the Information & Support team

Hi Lynn

Sorry you haven't had better news but I know you will keep positive and you are an inspiration to everybody. Thinking of you.

Love Beryl xx

Hi Lyn,

So sorry to hear your disappointing news but if anyone has the right positive attitiude to meet the new challenges then it's you. As so many others have said you are an inspiration to all of us so I hope and pray for you to get a good outcome.

I too am on Iressa with good results so far, and as you say, it does make you feel very optimistic. I hope the research you are doing will help you in the next phase.

Wishing you every success

Sue xx

mags03 in reply to suesal123


I saw your mail to Lynn on the Roy Castle blog yesterday. I hope you don,t mind me contacting you as I am on Iressa also and don,t know anyone else on it other than Lynn.I was diagnosed in June 2011 and started the tablets in July. apart. from reasonably minor side effects I have been very lucky.(so far).Just had C.T.scan on Fri.and see the oncologist on Mon 17th.I would like to hear your story if possible and hope you are continuing to keep well


So sorry to hear this news Lyn, you helped me when I was first diagnosed and helped me to put things in perspective, if anyone can get over this you can, just look at it as a bump in the road on this lung cancer journey we are on. My very best wishes and thoughts are with you


Thank you everyone for your kind words and support. I didn't sleep too well last night but I am still positive. I have great team of supporters and will endeavor to find out as much as I can about treatment options. I'm hoping that this will help everyone who may find themselves in a similar situation. I am lucky to have friends in the medical profession (some are doctors) who are trying to help me find out the best places to go and ask for advice/ second opinions so I will keep you all informed. I am very lucky in lot's of ways.

Love to you all

Lyn xx

FrancesP in reply to Hidden

Keep the faith Lyn, you never know what's around the corner, will be thinking of you as you have helped me a lot xx

mags03 in reply to Hidden

Hi Lyn,

Just wondering how you are,did you get started on the Afatnib?Been thinking a lot about you and would love to hear from you when you feel up to it.

Lots of love,


Sorry to hear the news of your scan wasnt good but i am a firm believer in positive thinking. I am sure you will take the right choice of medication especially as you have friends in the know. Thinking about you and will say a prayer for you too xxxx

JoannaHoyleRoy Castle

Hi Lyn

You are an inspiration and bring rays of sunshine to us all. I am thinking of you a lot and being the person you are you will continue in your own wonderful way to get through this and have the very best outcome. Sending you lots of love and positive thoughts. xxx

hi lyn

so sorry to hear your news.

you have been a constant support to people on this site so its our turn now to support you.

im sure your strong positive attitude will see you through what lies ahead.

stay strong

best wishes

nancy xxx

Dear Lyn

Sorry to be so late in sending you a message. Have been thinking about you though and wondering how you are feeling.

As others have said you have been such an inspiration to everyone on this site.

I hope you have a good new year and wish you all the very best.

Love Sandra xx

How are you Lyn thinking of you take care xxx

It is so wonderful to come on here and read all of the lovely message of support for my mum :)

Try going to natural health clinic like OHI in Texas or San Diego - many cured from cancer by going to raw food diet, doing coffee enemas, cutting out meat, diary, sugar, candy, etc. out of diet. no smoking, no alcohol

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