A bit of research! Please help if you can

Calling all who are taking 'Iressa'!

I'm thinking of doing my own bit of 'simple' research on how well Iressa is working for us as there doesn't seem to be a 'national' data base.

What I want is for anyone taking Iressa to get in touch with the following info. I won't use your name I'm just looking at figures.

Here's the kind of thing I'm looking for: (this is me)

1/ diagnosed march 2011, Stage 4. T4, N1, MXa, . Inoperable.

2/ EGFR positive. Exon 19 deletion.

3/ started Iressa April 2011

4/ First scan (6 weeks after treatment started) showed 20% reduction in tumour size.

5/ Second scan @ 6 months. Showed complete tumour collapse, now immeasurable.

6/ third scan @ 12 months. As above. no change no progression.

7/ (awaiting 18 month scan)

You can up date me on scan etc as and when they happen. I'm hoping this may show us a pattern and hopefully some hope.

Look forward to hearing from you.

Lyn x

[rainman31]

hi Lyn. Would love to take part will sort it out this week.

[suesal123]

Hi Lyn,

Only too happy to help in getting a picture of how this drug works.

So my details:

1. Diagnosed July 2012 with NSCLC T3N3M0. Inoperable

2. EGFR positive (not sure what the other bit is)

3. Started Iressa July 2012

4. First scan last week, 3 months since starting on Iressa. Tumour has shrunk by just under 50%

5. Oncologist very happy with progress and few side effects - just a few spots and dry skin.

I'll keep you updated with my progress

Sue x

[rainman31]

1. Diagnosed March 2012 NSCLC Adeno T2 N2 M1b. In operable

2. EGFR positive

3. Started Iressa April 2012

4. First scan @ 3months. Was told treatment working on tumour and lymph nodes, however debate because of activity (white bone) on spine. Oncologist thought it was indication that bone was healing.

5. Next scan this Friday, results in a weeks time.

[mags03]

Hi Lyn,

Very happy that you are doing this research,I am really interested and will help in any way I can. This is my latest update.

!. Diagnosed June 2011 NSCLC,adeno.(pleural effusion).

2.EGFR Mutation positive-not curable.

3.EXON 19

4.Started Iressa July 2011

5 Scan @ 6weeks after starting Iressa showed 60% reduction.

6.Subsequent scans showed no change.

7.Latest scan Oct.-no change.

[rainman31 in reply to mags03]

hi Lyn

Latest scan, stable- no change.

Onwards and upwards

[Joewarren]

Hi Lyn

diagnosed June 2012

EGFR positive

NSCLC adenocarcinoma of lung with pleural effusion non operable

CT scans 3 monthly

Scanned August 12 November 12 and March 13 no change in any of the scans but no progression either

side affects spots to face neck and abdomen, sores to scalp, occaisional nausea and fatigue

As an extra it may be of interest to ask people did they have any strange sensations or effects/pains before the obvious coughing or wheezing. 9 months prior to diagnosis I suffered with unexplained vertigo that subsided after about 3 months, to be replaced by intermittent right sided sinus pain particularly around the orbit of the eye and side of my nose, a symptom that has remained and my tumour is on the right side of my lung, Then all the more obvious lung related synptoms started after a further month i.e. coughing and wheezing. As a non smoking group it may be of interest to see if we can find any common earlier symptoms amongst us that may help with earlier diagnosis for others, because unfortunately as non smokers it is not at the forefront of anyones mind to get an X Ray done until our condition has advanced.

[unica55]

Hi Lyn, this is the second time that I try to reply to your message and I hope that you are still interested on researching about Iressa. (I'm not so good with medical terms, but I'll do my best to help you)

1) diagnosed with terminal cancer in November 2010 (cancer spread to the Lymphatic system and effected the nodules in the mediastinum area...after the first operation in 2008)

2) EGFR positive

3) Started with Iressa in January 2011

4) The first scan after about 3 months, showed a considerable reduction of the tumours

5) The second scan about sex months after showed very little of them to be seen, immeasurable.

6) The third scan showed no change.

7) After almost 2 years from the start of Iressa the scan has detected "new nodules sprouting up" I was devastated by the news, because I thought I was with the golden tablet, so on the mend or at list controllable! So I had 22 sessions of radiotherapy to try to eradicate them. The tablet was suspended until the treatment was finished and now I'm back to it as before. It's now 37 months since January 2011 and I keep positively happy and hopeful that all will be controllable. I have faith in my oncologist and all the team that looks after me.

I hope that you had good results and continue to feel wonderful.

Look forward to your news

Best wishes to you and

best regards

Franca xx

[unica55]

Hi Lyn, are you ok? Not heard anything from you from a long time and I'm just wondering how you are doing.

Look forward to hearing from you.

Best wishes

Franca xx

[LorraineD Partner Roy Castle]

Hello Franca

I think Lyn is fine but has not been on this siet for a while. She is has a blog which you can find by typing Lyn Barrington's blog into a search engine.

I hope you are doing well and continuing to cope with your treatment,

best wishes

Lorraine

on behalf of the Information & Support Team