j ross

Dear Randy Firstly let me thank you for thinking of us in the UK. I have been lobbying my member of parliament about this. I have been in touch with press etc. I have been in close contact with Roy Castle foundation (british lc charity). I did manage to get on TV over here. We are lucky we have access to both tarceva and avastin and Barry is now nearly three years into this disease and although he has stage 3b he is still fit and healthy. I feel I am banging my head against a brick wall. This organization NICE does not even reveal the formula on which it basis its decisions. It would do starlinist ussr credit and this is the UK. I have tried to get uk lc patients to help but so far with no success. Maybe they are too ill and their relatives too stressed. There I have vented.

Barry has six cycles of alimta. Side effects we bearable. Flu like symptons a few days after infusion which lasted a few days. No hair loss. Blood counts were ok. Significant shrinkage. Jennie

Great to hear you are doing so well. Barry is due to reach the three year mark soon and for all that time he has been almost asymtomatic. We were also given little hope on diagnosis. Very best wishes Jennie

hello lung cancer treatment in the uk on the nhs if very poor. oncologists are restricted in drugs they are allowed to supply and I think many have a mind set that once they read lung cancer they give up. the first oncologist we saw said that there was little to be done he could have some chemo but it did not make much differenced. that was in may 04. he is still here and fit for purpose. jennie

A very big thank you for all you do. Not only do you research for the US people but you don't forget us in the uk. THANK YOU Jennie

hi I am going to pm you with my telephone number. Please get in touch. Jennie

Yes I am so angry and noone seems to really care. Yes it stinks and you are lucky to live in the US. I used to support the nhs now I think our current government is without morals. We are fairly fortunate in that Barry over the years and through working has share options etc so ,so far we are able to afford a treatment. He must be the only lung cancer patient getting avastin at the moment but if needed for maintanence I not yet sure what will happen. I have tried to start a campain via the roy castle site but have not have a single reply so maybe everyone is too ill to care. Jennie

Barry is currently on both. 3 treatments so far. Last scan showed shrinkage. Feels under the weather about the third day after treatment, this lasts approximately a week lessening all the time. Currently working and feeling fit and ok. Jennie

It is strange that no two people even with the same disease are alike. Barry is on alimta and avastin. About three days after treatment he feels tired and a little unwell but bounces back after a week. He finds this treatment much kinder than the gemzar he was once treated wtih. Jennie

Sending very best wishes for a good outcome. My husband Barry was given a virtual death sentence in May 2004. Although he has never been given a clean cancer free bill of health he has never really been ill either. Scans have shown both some growth and lately shrinkage but throughout all of this our lives have been normal (apart from worry). I now kind of treat it like a chronic disease. Yes I am scared but when I can put it to the back of my mind life is good. Jennie

Hello Barry has just had his third round of avastin together with alimta. The scan after two rounds showed the tumors are shrinking. Side effects are fairly mild. Three days after infusion he feels tired and a bit below par but this goes after a few days. Otherwise he feels normal. Best wishes Jennie

Hello Barry had a plueradesis in May 2004. No problems since. Jennie

Dear Randy Thanks for thinking of the uk. LC organizations here are not very pro active. Drugs like Tarceva are being denied on a regular basis and try as I can to push some buttons it is like screaming in the wind (excuse the mixed metaphors). There is never an adequate response from anyone, it is so frustrating. Best wishes Jennie

Dear Don My heart is also heavy today. Condolences to you and your family. Jennie

May I please add my name to those who feel so so sad. He always gave one hope. I will miss him although we never met and lived so far apart. Jennie

I will also miss Jimben's posts. Very sad to hear this news. Jennie

Just to say our sad I was to hear the news. Her fight was inspirational. Jennie

Hello Barry had a talc procedure done in May04 and there has been no problems with effusion since. Best wishes Jennie

YES! Great news. Inspirational. Jennie

YES! Fantastic This helps us all. Jennie

Can I second that. Jimben you have also been an inspiration to us. Jennie

Welcome from a fellow Brit My husband was given a poor prognosis over two years ago and he is still here feeling fit although he still has the disease and the last scan showed slow progression. Please let me know if you would like me to share any informatiom experiences with you in relation to UK. Jennie

This drug kept Barry very stable for over a year. So it does have its uses. I cannot understand this. Jennie

I am so so sad. her courage was evident in her posts. She will be very greatly missed. My condolences to her family. It is so unfair. Jennie

Good news for one member is good news for all members. Great Jennie