You may or may not recall that my husband has been having chemo for metastatic sqaumous cell carcinoma of the tongue after surgery and radiotherapy failed.

He's had the two standard treatments - Cisplatin with 5FU and Docetaxol, both of which failed.

We have been doing lots of research and contacting Head and Neck teams/Oncologists around the UK and a few in the US for further suggestions. Hopefully none of you will need this information, but this is what they have come up with:

Iressa - currently being trialled in the UK but we didn't fit the trial criteria. It is available on a compassionate basis from AstraZeneca and takes a few weeks to come through. In the meantime we are trying:

methotrexate/cyclophosphamine - anti-angiogenic in reducing blood supply to the tumour.

Cetuximab (Erbiutux) does target VEGF, and is available commercially, though not licenced for tongue cancer but for colo-rectal. There is some new data with radiotherapy, but it could be used on it's own "speculativley"

Gemcitabine is a chemotherapy drug used mainly in lung cancer and bladder cancer in terms of licencing, but there are some reports in head and neck cancers.

And then there is the p53 protein gene therapy - currently licenced in China by Sibiono (and available for non-nationals to go out there to be treated privately) and undergoing trials in the US at Introgen. This seems to have the highest rate of success, but it isn't available in the UK although work is still being done.

Regards

spouse

You know I still find it odd that there are some that are having chemo for oral cancer. I had a team of doctors that told my husband and myself at the very begining of this in 1999 that chemo wouldn't help this cancer. That it is the rule that radiation is for the neck up, chemo is from the neck down. I was never offered chemo or talked to about it except that it wasn't an option for me. Yet I hear so many are having chemo for this. I wonder what the difference in treatments are from one land to another. Just odd to me....Always Vicki Lynn

Well the Gemcitabine suggestion came from an MD in Nebraska so it seems there are some docs over there who are using chemo.

I guess with us that as the surgery and radiotherapy failed, with further surgery not an option due to numerous skin nodules, chemo is the only thing left?!?!

Hello I'm not too shore how this works. I urgently tring to find out from "Spouse" who wrote the message contained in the link http://rdoc.org.uk/eve/forums/a/tpc/f/19510549/m/971106601. posted 17 November 2004 08:11 AM.
A part of the message says:"Iressa - currently being trialled in the UK but we didn't fit the trial criteria. It is available on a compassionate basis from AstraZeneca and takes a few weeks to come through. In the meantime we are trying:"
I have tried with AstraZeneca but without sucess to get Iressa, Maybe Spouse has in some way managed could I know if so how?
Please help, time is running out fast.
I managed to find a company in China selling the P53 gene therapy but China is too far for me to go.
Thank you

Dear Giuseppe

Sorry for not seeing your reply sooner.

My husband and I managed to get some Iressa from AstraZeneca through his oncologist. Unfortunately he passed away on the day before it arrived at the hospital so we will never know if it would have been successful.

If you want to know the name of his oncologist, so that you may contact him to find out how he got the Iressa, then please send me a private message.

Regards

spouse

Thanks for your reply. Please accept my condolences. We managed to find IRESSA too but unfortunately my mother is not in a good enough condition to take it any more. Unfortunately this is not the first time we have arrived too late. A lot of the blame goes on the doctors who just don't care. There is no justice in this world.

Hi Giuseppe

We all wish to do our best for our loved ones and will feel angry at the pain and distress they suffer. There often seems to be no justice or fairness in this imperfect world. Life is about living through it all the best we can and still being able to smile without anger for all life is transient and it is how we live it that decides our perception.

Best wishes
Vinod

Hello Dr. Joshi and Spouse,
Thank you for you kind words. Just to let off a little steam, Yesterday the doctor in charge. After stating again that nothing from the oncological view point could be done I mentioned how a British doctor ( head of the head and neck dept. in a London hospital)and how a German professor studing these malignancies sugested we try IRESSA would you like to know what the pompous a.... replied. Well then take out you mother from this hospita and take her to England. I was strongly tempted to give him a puntch on his nose, fortunately for him and may others I have a family to think of. He continued saying that from England the send patients to them. Is it the position of power that turns these people into monsters or is it in thier DNA?

Giuseppe,

I know how you feel, we've had a similar situation in Belgium, where my dad has ineroperable squamous cell carcinoma and the surgery & radiotherapy failed. His sruegry was in Aachen, Germany, as my dad couldn't get to see a good surgeon in Brussels (holiday...). The radiotherapy took place in Leuven, Belgium, and now he is being treated in the UCL, Brussels, Belgium.
We tried to get him into a clinical trial for chemo with the standard cisplatin & 5FU, as well as Cetuximab. He is so far gone, he didn't get into the Cetuximab group.
How did you manage to get Iressa?? Did you write to Astra Zeneca or call? What are the criterai to get it?

Thanks,
Suhela

Actually, I just read that AstraZeneca is severely limiting access to Iressa, as the clinical trials are not going well...

I think for head and neck cancer, Cetuximab has shown good results, it's in clinical trials phase 3, so it's been around a while. There is also a new antibody drug called Proxinium, but that is only in early clinical trials phase 1. It was tested in South America and Russia..

Dear Suhela,
I wish you and your loved ones all the best. Unfortunately my mother passed away 8 days ago without the possibility of trying Iressa or any other product thanks to the "humanity!" (or lack of should I say) of the doctors. Iressa could be easily obtained from the Vatican farmacy with a doctors perscription.
I'm so sure that had my mother been diagnosted sooner and in a proper way the story would have ended in a better way, but we will never know, or will we?.
I personally feel that Proxinium and the P53 gene therapy is "the way to go" as the tumor is attacked directy at it's site and the obvious side effects reduced.
This whole story has left me wishing I had made my childhood dream come true studying Medicine instead of Physics and at times feel like trying anyhow, but for obvious financial and to a much less extent age reasons this is a bit difficult, but as they say, "the lords roads are infinite" (Thats translated from Italian) so who knows, when these's a will at times theres a way.
I'm sure I would have made a least, a more humane doctor than the majority of ones I have met to date.
Best wishes to all and lets hope and pray (for the religious) that one day the lives that have and are being sacrified to find a cure to all the "non cureable ailments" has served to help the future generations.

Dear Giuseppe,

I am so sad and upset to hear that your mother passed away so recently.
We try to do all we can when our loved ones are this ill, but even if you had known more about medicine, you can't know about everything. My sister works for Roche and is a clinical consultant on oncological products. She has a lot of contacts and knowledge about new medication, even then ultimately you are dependent on the doctors and getting into a clinical trial for the specific types of cancer. Most will opt for "standard" chemo, as it's available cheaply. We considered paying for Cetuximab, actually buying it in Germany (because you can get it there outside of clinical triels) and then administering it at the Belgian hospital. However, for legcal reasons the Belgian doctors aren't allowed to do that... What do they expect.. we can't move an terminally ill person to another country for treatment..

My hope is also that things like Proxinium and gene therapy will offer a breakthrough for head and neck cancer. Time will tell, but unfortunately our families didn't have that time.

Please look after yourself, you must have been going through hell, as well. My thoughts are with you.