Group for those being treated with iressa

[LorraineD]

hello,

following interest from a number of users we agreed to set up this thread. The idea is it provides a location for people to share experience if they are or have been treated with iressa. It is also open to people who have relatives who are being treated.

Let us know if you find this useful or if there are other threads you would like to see. We are also considering other ways we can offer support to people affected by iressa so do share your ideas.

best wishes

Lorraine

[mags03]

Hi Lirraine,

I would be very interested to join the Iressa thread.I have been on it now since July 2011.and although I still feel good I am now worried that I must be getting close to rejection time..

I would also be happy to share my experience with anyone starting on the Iressa journey

Mags.

[annecarmel]

Hi,

This thread is great news for those of us taking Iressa. I have attended a number of cancer groups and courses but have never met anyone who is also using the drug. Even the professionals involved in the groups have been unaware of Iressa. I have found that oncologists themselves are on a learning curve, particular in respect of how to treat various side effects. The more detailed information exchanged the greater and wider the fund of knowledge that will be built up. I was heartened to learn that someone had been treated with Iressa continually for 8 years from the trials stage until recently. That's something for us all to hope for.

Anne Carmel

[LorraineD Partner Roy Castle]

Community blogIressa and continuity in the NHS.

Posted by annecarmel 3 days agoReport

NHS doctors generally do not appear to understand the importance of continuity of contact in treating long term patients. In the first 8 months of my treatment for lung cancer I saw 6 different doctors. After 2 months I was placed on Iressa. At the time this was a fairly new and infrequent (still is) treatment for the NHS. Each doctor I saw was at the start of a learning curve. When Sandwell Hospital appointed a new permanent consultant oncologist (whom I'd seen earlier when he was a locum at the hospital) I was offered an appointment with his registrar. I stood my ground and, explaining my reasons, insisted on continuing to see him. This has worked well for me in the past 18 months, enabling me (and my family) to build a close and trusting relationship with him.

This problem of continuity appears to exist throughout the NHS. It is sometimes a bind having to wait to see a particular doctor at my surgery. But I learned the hard way that it is worth it.

Early in my treatment I saw a gp locum about a stomach problem, for which she instantly prescribed Lansoprazole. I handed the prescription form back to her and explained that I had been taken off this drug when I began taking Iressa. Lansoprazole, and others like it, reduces the absorbtion levels of Iressa (by 37 percent I understand).

Had she prescribed a different drug in the same group I would have been unaware of the potential risk.

Doctor-hopping is unsettling for long term patients and, in my opinion, detrimental to their treatment.

[suelakes]

My Dad has been placed on Iressa and within a couple of weeks he started experiencing very bad memory loss and confusion. The consultant is adamant it has nothing to do with either the secondary brain tumour or the Iressa and that the Iressa has actually caused tumour shrinkage. But his memory is getting worse by the day. He has now been on it around 2 months.