As a new member to this site I would like to speak to anybody who has or is taking Iressa.

Thanks David

Hi David,

Try this:

Iressa search

Hope it helps.

Mimi

Hi Mimi
Thank you for your reply I have actually been on Iressa for the last 4 years and wanted to know if there was anyone else out there in the same position and, if they have any strange side-effects.

David

Hello David

Can you tell us a bit more about your cancer and treatment. Are you having any side-effects with Iressa?

Best wishes
Vinod

Hi Vinod
It seems to me that it is a very difficult process in diagnosing tongue cancer. It took the doctor nearly a year before I was send off for a biopsy, well 5 biopsies infact, before they told me I had T4 matastic sequemish something or other lol. So, I ended up having chemo and 33 sessions of radiotherapy. But first I was told I should have half my tongue cut out (Idon't think ss having seen how they butcher peoples faces).
Why in this day and age is treatment for cancer so barbaric? For all the millions spent progress seems very poor. Anyway, not having been warned of the after-effects of radiation I was totally surprised that suddenly I could not eat. Having had extreme cravings for Nutella chocolate spread and rice pudding, I could not eat enough of the stuff lol. I went on to use a feeding tube, here lies another story of nobody wanting to be responsible in replacing the tube!! so, in the end I did it myself. I must just say that the petty hassles I have had with many NHS staff have totally left me very disillusioned with our system here. Having said that there were of course many very helpful people.
I am now not having to use the feeding tube but still on liquid food. It is difficult as the inside of my throat seems all fused together.
I started taking Iressa in 2003 500mg although for awhile I just took half the dose as it made me feel so lethargic and really dehydrated my skin. I am switching between 250 and 500 depending on how I feel but my latest count was around 174 which is the lowest it has been so far.
The hospital are quite surprised that I have lasted so long lol as the Iressa trial has finished and was deemed not to work for H&N cancer so, I must be the exception to the rule
Looking back over these events the most annoying features were
!. that my doctor thought I was too young to have this type of cancer and consequently sent me home with pain killers for nearly a whole year.
2. the cancer specialists never told me what the consequences of radiation therapy would be and
3. that in the 21st century there is a lack of any decent progress in treating this type of cancer.
I must just add that with all that has passed I am surprisingly happy, its sunny today so that helps. I just miss my old social life so much revolves around eating and drinking lol

Best wishes
David

DAve,
i wish you the best. Mouth cancer is horrible.
Its probably the worst type cancer to heal from
because of so many post surgery symptoms.
The Tongue is a very delicate muscle and everyone needs it. Its too bad there is not
enough research done on surgery techniques and
post surgery besides the knife that they cut you with.

Best of luck

Jerry

David - I'm sorry to hear of your troubles. My mother's journey through the NHS has been fantastic, with a great team of people. She was told what she needed to know at every stage of the treatment, and although it didn't make it any easier to endure, I think it helps somewhat to know what you are going through is "normal" if that is the right word.

I struggled to even think about the barbaric nature of the treatment my mum was to endure, but she did it and now - 17 months after the op and radiotherapy etc. she is on the final lap, having dentures fitted to enable her to eat "a bacon sandwich". If it was in your foot or your arm, you wouldn't hesitate to have it cut off to get rid of the cancer, but because we all need to be able to eat, drink and breath, the terrible effects of surgery and radiation on the mouth are magnified.

Try to find a local support group if you can - my mum has benefitted enormously from the personal support of her group, in ways you could never imagine.

Hi Jerry
Many thanks for the best wishes. I certainly wish you all the best to. I feel that in many ways I have come out of this better than many. I decided not to have surgery, after seeing the results on other patients. Surgery was the first thing offered to me before any other options were discussed, very odd !! Even after 4 years my tongue is still very solid I can just swallow liquid food but, have so much thick saliva I have to spit all the time, which I feel very self-conscious about.
Well, I wish you all the best
David

Hello Winnie
Thank you for your kind thoughts. I certainly wish your mum the very best.
I must say that all the support staff were extremely helpful and friendly, however, I found many of the consultants need to upgrade their patient relationship skills (putting it as nicely as I can lol)
Anyway, enough moaning best wi sh es to you and your mum
David