Dr Vinod ,we are really struggling at moment with the worry of this negative biopsy and Paul is so down about the thought of more RT with this new IMRT that maybe be a possible treatment .We know this will only be an option if the MRI scan shows there is no spread anywhere else and the waiting for his scan to be done seems never ending although they have said he is a priority and it will be soon, it is now a week and seems like a month .

I have been searching the web for alternative treatments as at moment he feels so down.I have looked into Photodynamic Therapy and have e mailed a Mr Hopper who has said this has had good results with recurrent Nasopharyngeal cancer.He also said if the cancer has spread to other areas it would not be of any use .

Do you have any information on anybody who has had this treatment .I think it helps us to search out alternatives at this point if only to build up our hopes .

Thank you ,
Paul and Bell

Hello Bell

I am sorry but I personally don't know of any patient who has had PDT. I would suggest that you and Paul try and relax. Whatever the outcome, you and Paul should take each day at a time and realize that how each day is spent is the more important than trying to predict the future. Go for walks and do things together that you have always wanted to do, while waiting for the MRI scan. Let's hope for a favourable finding.

Best wishes
Vinod

Thank you for the reply Dr Vinod,you are totally correct about enjoying the present time and taking each day as a gift and making it count,yeterday was a better day and Paul feeling more comfortable after his operation 2 weeks ago .His nose has dried up a bit now and breathing easier.We managed a walk along the sea and chatted positively about the future and about the early days when we we first met,which was 32 years ago.We are like a couple cloned the expression our kids use !!.
Appreciate your reply ,and thanks for your good wishes.

Bell.

Hello Bell

Something that might help, acrticle taken from Daily Mail 22 MAy 2007.
You might also want to check AlanB posting (under medication) on 10 October 2007 his mother has been treated with PDT
I hope this info help you my best wishes to both Paul and you.

Regards


Tony



Could light therapy beat cancer in a single day?
By JEROME BURNE - More by this author »

Last updated at 16:30pm on 22nd May 2007

Comments (7)

A cancer treatment that is less invasive and gruelling than conventional procedures - and cheaper - is the Holy Grail of oncology research. So imagine if that treatment already existed.


The fact is, it does - but few people know about it and few hospitals offer it.

Photodynamic therapy uses tumour-killing drugs that are activated by light.

With skin cancer, first a cream is rubbed onto the affected area, then a light shone onto the cancer for 20 minutes. This creates a form of oxygen which destroys the tumour.

The same technique can be used to treat cancers inside the body, if the area can be accessed with an endoscope (a flexible tube) containing a light.

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Photodynamic therapy uses tumour-killing drugs that are activated by light

The patient needs just one treatment - unlike the repeated doses required for radiotherapy or chemotherapy, and the side-effects (pain, swelling and nausea) are far milder.

Photodynamic therapy is also cheaper - doctors offering the treatment claim it costs less than half the price of chemotherapy.

But despite its promise as the next generation of cancer treatment, photodynamic therapy is not widely available.

There are just seven hospitals in the UK offering it as a regular treatment, even though it is licensed by the National Institute for Clinical Excellence for cancers of the skin, head, neck and oesophagus.

Now the veteran broadcaster Sir David Frost has agreed to help an appeal to increase awareness about the treatment, and to raise £50million to fund research.

"I can't understand why it isn't standard

treatment," he says. "We are always reading about new cancer treatments that are so expensive there's a postcode lottery for them.

"Well here's one that works brilliantly and is far cheaper - yet patients are still having to fight to get it because cancer specialists often don't recommend it."

Sir David became involved in the appeal following the experience of Professor James Knowlson - Samuel Beckett's biographer.

Knowlson had already had surgery and radiotherapy for a mouth tumour, when his cancer returned a year later.

"More radiotherapy was not an option because it would have destroyed my cheek, while further surgery would have involved cutting away a considerable part of it, leaving me permanently scarred," said Knowlson.

"I would have to have had a skin transplant, and nerves controlling my mouth could have been destroyed. I would probably not have been able to produce saliva."

Then an American specialist told him about the National Medical Laser Centre at University College Hospital, in London, where a team were using photodynamic therapy.

"This saved me from the most dreadful surgery," says Knowlson. "Today I speak and eat normally."

That was eight years ago, prompting Sir David's question: "Why is it taking so long for this treatment to get the recognition it deserves?

"I've heard of areas of the country where out of a dozen patients suitable for photodynamic therapy, perhaps only two will be offered it.

"That's terrible when you consider the huge difference in terms of what happens to them."

This difference can be seen, for example, when comparing photodynamic therapy with conventional treatment for Barrett's oesophagus - a form of cancer.

The oesophagus is the tube that runs from the mouth to the stomach.

If you suffer from chronic heartburn, the acid that leaks from the stomach and into the end of the oesophagus can damage cells there, and they become pre-cancerous.

It affects about 8,000 people a year. The standard treatment is surgery, which takes around ten hours.

The oesophagus is cut out and the stomach is stretched to form a replacement tube.

Afterwards, the patient can eat only liquidised food. Recovery can take nine months - five per cent of patients never recover. Treatment costs around £23,000.

With photodynamic therapy, the patient drinks a couple of glasses of liquid containing the drug.

An endoscope with a light at the end is put down the throat under anaesthetic, and is shone onto the damaged cells for a few minutes.

The patient can go home the next day, and fairly soon is eating normally. This treatment costs £6,000 - £17,000 less than surgery.

Actor Mark Kingston, whose credits include playing opposite Julie Walters in Educating Rita, underwent photodynamic therapy when he was diagnosed with the disease.

"What happened was so simple that part of me wondered if it could be doing me any good, when other patients with the same condition are ripped apart. I came home on the bus the next day."

Photodynamic therapy has been licensed to treat cancers of the head and neck for five years.

The difficulty with conventional treatment is that nerves can be severed, with long-term effects, and radiotherapy can damage saliva glands.

But Colin Hopper, consultant maxillofacial surgeon at the Laser Centre, says he hasn't found any damage to nerves with photodynamic therapy.

A study presented at the 11th World Congress of the International Photodynamic Association in Shanghai, in March, involved 39 patients who had already failed regular treatment or were unsuitable for it.

Hopper says: "Photodynamic therapy was successful for 68 per cent of them. The success rate for chemotherapy as the first line of treatment is about 7 per cent."

He estimates there are more than 3,000 head and neck cancer patients a year who might benefit from the treatment. It could help limit nerve damage in those with prostate cancer - which can cause incontinence and impotence.

Mr Hopper said a new study reported impressive results for patients treated with photodynamic therapy, after radiotherapy had failed. "This was a difficult group of patients with a poor prognosis," he says.

He adds: "Out of 13 patients who had the highest and most effective dose of light, six had no sign of cancer after six months. None of them had nerve damage.

"I think there is still a feeling in the profession that it is a treatment of last resort.

"Even when patients ask about it, they can be fobbed off with comments about how the evidence isn't in yet, and how it needs more trials."

Sir David Frost is emphatic: "If there still isn't enough evidence of its safety and effectiveness, then let's get it fast."

Stephen Bown, professor of Laser Medicine and Surgery at University College Hospital, said: "It's been quite a battle to get doctors running clinical trials comparing treatments to include photodynamic therapy in them.

"We've spent 20 years making slow and painful progress because of a chronic lack of funds."



• Visit killingcancer.co.uk

On the KILLING Cancer website you'll find all the topline information you'll need about PDT & Photodynamic Therapy.
Link: KillingCancer.co.uk

Thank you for your respose Tony and Kathleen, that was an interesting piece to read .Had already found the the killing cancer link and e mailed Mr Hopper who has said he would talk to Paul after his MRI scan results, which we got the date for today, it is on the 26th of this month so we are sitting tight .The other possible option we may have is the IMRT at The Royal Marsden .Paul is in shut down mode at moment and would like to feel this time should more treatment be an option he could make a personal choice with a view to some quality of life afterwards.I will print off your information for him to read .

Thank you so much.
Best wishes Bell

Hi Bell and Paul

Glad the Daily Mails article is of help, it is well worth buying on a Tuesday and Sunday.

See if AlanB is around his mother was treated with PDT and the last time I heard from him she was doing well.


Science Daily well.

Yorkshire Laser Centre


Bell, I have included a couple of other links if you search the Seience Daily it has some amazing links about the latest technologhy.

Also of interest I hope is a link to the Yorkshire Laser Centre.

Keep on posting, very best wishes to you both.


Regards



Tony

Dear Tony, you have been so helpful with the links you have sent .I am going through them and letting Paul read them ,he is still not into computers yet and I am still getting the hang of it.The articles and links are most helpful .We will keep posting. At moment we are waiting for the MRI scan to be done on 26th of this month .Apparently it will depend on whether there is any other problem other than reoccurence beneath the original site whether Paul can benefit from IMRT or the PDT.So we are sitting tight at moment.
Thank you again Tony .
Bell and Paul.

Hi Bell and Paul

Glad to here the links are of help, I kept a big scrap book last year there was one article I will see if i can find it again, it was about a UK dr well known that has had treated "difficult" cases,if I can find it I will post it.

I have had a bad tooth ache this week, so I am off to the dentist on Monday, your mind starts to think - well you know what I mean.

Regards


Tony

Hi Tony ,that would be great thank you .Replied to your other post about your sore tooth .paul had similar problems ,also when you are sleeping and your mouth is dry you can catch the inside of your mouth and lips to cause the swelling .Paul did this a lot especially when he had a painful tooth he also got bad ulcers due to gums catching teeth when sleeping due to lack of moisture and being so congested .

This may just be heightened sensitivity due to RT and some sealant will help or could be just normal teeth wear and tear Tony ,because of your treatment simple tooth problems spiral out of control and it is only natural as everyone on the site knows .
Let us know what dentist says Tony the worst case sonario is that your tooth is needing some more root treatment if it has been previously crowned .Paul had to have a crown redone this year but was successfull and has kept his tooth .
Good luck at dentist ,I still get the jitters when I go ,always had soft teeth and wish I had looked after them beter when I consumed copious chocolates in my teens .

Best wishes Bell.

Hello Bell

I have found the acrtile it is from the Times.

The Fast Track Cancer Cure

Regards


Tony

my father suffering from head and neck cancer had undergone 3 surgery. 1st surgery was for buccal mucossa (nov, 2006) followed by radiotheraphy, 2nd was MRND(DEC,2007), 3rd for sub mandable(march 2008).now again recurrence on sub mandable.we have been advised to go for radiotherapy combined three choice of chemotheraphy 1) Platinum based chemotheraphy 2) Platinum based chemotheraphy along with BIOmab 3) Eributex (whatever v choose depending upon the cost 1st least costly followed by 2 and 3). Please advice the pros and cons of each.