Photodymanic Therapy (PDT)

[Nardobd]

I've just read a very exciting article from the Mail, which can be found on the following website: http://www.dailymail.co.uk/health/article-1219948/A-ray-light-kill-cancer-cells-leaving-terrible-scars--offered-it.html

The KillingCancer website gives contact details for the team involved and I've emailed the contact for pancreatic cancer asking about the clinical trial for PC and the funding stream. I will, of course, share the reply with everyone here.

Nicki

[Juliana]

My father found information on this therapy a few weeks ago, it was something I was going to mention at my next meeting with my oncologist. I had no idea it was being used and 'could' be done on the NHS.....this makes it very interesting. Still feels just out of reach though - it's so frustrating reading about these break-through treatments via the internet but not knowing how you could get it to work for you.

Glad you are on the case Nicki....it's like having our own Cagney and Lacey team rolled into one person

Juliana x

[Ellie]

Hi Nicki

Wow, this sounds very promising! At least for some cancers, anyway. It sounds possible for pancreatic, too, as long as they are treating one tumour. I doubt, from what I've read, that it would benefit secondary cancers, but please let me know if you learn otherwise.

Good luck in contacting the people involved and hope you get some positive info.

Best wishes

Ellie

x

[Ellie]

Hi all

I emailed the man behind this new therapy and had a very prompt reply last night. I asked if it was of any use to someone with secondary cancer in the liver and, as expected, the answer was no. They haven't got a team or money to fund research into the liver at the moment.

It's what I expected to hear.

Ellie

x

[Juliana]

Hi Ellie -

Could you tell me where to get the contact address (if you are not comfortable with posting it on a forum) so I could ask the same question, but for the lungs and superior mesenteric artery?

Thanks,

Juliana

[Ellie]

Hi Juliana

No problem with giving you the info. The director of the organisation is David Longman. The web site address is www.killingcancer.co.uk. There's a link on there that you can use to emai them and it says please do that if you want any more info or to donate etc. There is also lots of info on what they've been using PDT for so far, so you may find something on what you are looking for anyway.

Best wishes

Ellie

xx

[Juliana]

Hi all,

Just to let you know I've finally had my reply back and the answer is no:

"Unfortunately having any metastatic disease ie in the lungs excludes you from the pancreatic PDT trial at UCH".

I have read several trials currently underway in the UK, but find I am 'excluded' due to:

1. Having the primary tumor removed

2. Having already received Radiotherapy

3. Having already received Chemotherapy

4. Having more than one tumor or the fact it has metastised

(this site gives a list of all trials worldwide - or you can select UK only if you refine the search: http://www.cancer.gov/clinicaltrials/search)

How on earth are the likes of me supposed to get on a trial that may show possibilities or promise when I have been treated already, unsuccessfuly by the standard form of chemo/radio therapy? It's like even though mainstream didn't work, that is all you are left with.

I never received a reply from Dr W. Liu who treated the 73yr old with combination therapy of Lenalidomide and Gemcitabine.

Juliana