Has anyone had experience of PDT (Photo Dynamic Therapy) for a Mouth cancer?

My Mum was diagnosed with mouth cancer (roof of the mouth) just over a month ago. This is the 4th different Mouth cancer she has now had (first was 7 years ago, 2nd in summer last year, and 3rd in late autumn last year). She had surgery for the first 2 cancers, radiotherapy for the 3rd (ending early this year) and for this latest time her consultant sent her to Bart's where she has just gone through the PDT injection and the light operation last Monday. She is now back at home, in the dark, but still has a lot of pain and some other problems.

What I really want to be able to tell her is how long she needs to stay in the dark, or away from bright lights/daylight. We seem to have different advice from different sources. The CancerBackup website says 2 weeks, the MacMillan nurse at Barts said 3 weeks (due to going through radiotherapy recently), one of the ward nurses said 3 months.

So if anyone has gone through PDT (particularly with the radiotherapy beforehand) it would be good to be able to pass on any advice or experience that you have.

Thanks very much. Alan

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hello Alan


Very sorry to hear about your mother.

PDT seems to be a very interesting form of treatment.
A while back the Daily Mail did a section on PDT which was very interesting.
I have put a link to another UK web site that you might want to check out.
They might be able to help on your question about staying in the dark.

From what I have read the treatment is very promisisng for mouth cancers, I am sure all on the web site would be very interested in how your mother is progressing.


PDT website

Regards


Tony

Thanks Tony. I had not found that website before. They also had a link on their to a website that has some interviews Chris Tarrant did that gives an intro into PDT and one patient who had it Interviews with Chris Tarrant about PDT

I have also posted a question to CancerBackup to see if they can clarify the length of time for staying in the dark. I will post back here the answer and how Mum gets on.

Hi Alan

Thanks for the link.
Hope all goes well.

Regards

Tony

I got a response from my query to CancerBackup about the length of time to stay in the dark. It seems it can vary according to drug used and the individual patient. Below is an extract from their reply...

quote:

It’s difficult to give an exact period of time that your mother must stay in the dark and away from bright lights for. This is because there are different light sensitive drugs that are used and they may cause different periods of side effects. Every individual will also have slightly different sensitivity to light after PDT treatment.

Generally after 3 weeks most people can then expose themselves to bright lights and go out in the sunlight. However for some people this can take 4-6 weeks. It’s usually advised to expose a small part of the body to direct light for a short period of time, such as 5 minutes, and then assessing the skin reaction the next day. Light exposure should then be increased gradually.

It’s also important to take care in the sun after treatment. Although having radiotherapy does not mean that you have to stay indoors it’s important to take care in the sun. This is because the skin in the area treated can be more sensitive to the sun after, particularly when someone has had more than one treatment.

I will post again later on to say how Mum is getting on. But if anyone else does have some experience of the PDT treatment then please pass on some details if you can. Thanks

Hi Alan

Thanks for the posting.

I have not come across anyone on the site that has had PDT apart from your mum.

Have read a little and it seems to be a very interesting treatment with good results for certain types of cancers.

Good advice about to much sun after R/T, factor 50 for me know.

Keep on posting, hope your mother is recovering well.

Regards


Tony

from the Northamptonshire Evening Telegraph - Kettering,Northamptonshire

quote:

Treatment is dying man's last hope

A DYING man will find out today if he is suitable for a revolutionary cancer treatment which experts say could save his life.

Brad Tompkins will undergo an MRI scan at University College Hospital in London which will determine whether he could benefit from the breakthrough laser therapy (photodynamic therapy) to treat his mouth cancer.

Mr Tompkins, of Rushden, has rejected the chance of chemotherapy and radiotherapy, as well as surgery to remove parts of his tongue and throat, because it would severely affect his quality of life.

It leaves the new treatment his only hope for treatment.

So what happened?

So what happened?

well.....

from the Northants Evening Telegraph dated 21 July 2007:

quote:

Laser therapy joy for cancer patient

A CANCER patient is facing a new lease on life after finding out he will get revolutionary treatment. Last week, Rushden man Brad Tompkins underwent an MRI scan at University College Hospital in London to determine if he would benefit from breakthrough laser therapy to treat his mouth cancer.

He was delighted to learn on Thursday that he is suitable for the treatment, leaving him ‘over-the-moon’.

The 48-year-old said: “They’ve accepted my treatment and I will be going in either this week or next week, and it’s absolutely brilliant news.

“If I had chosen to go down the chemotherapy and surgery route I was facing the prospect of losing my voice-box and my throat glands and I could not have lived without being able to communicate with other people – what is important is my quality of life, however long that might be.

“Hopefully within three weeks I will be back to normal, and even if the treatment only holds the cancer off for, say, a couple of years, that’s two years more than I was expecting.

“It’s an immeasurable feeling of relief and I’m over the moon.”

Mr Tompkins was diagnosed with cancer in April and found out about photodynamic therapy (PDT) as an alternative to chemotherapy and radiotherapy through a newspaper cutting a few weeks ago.

The laser therapy was pioneered by Colin Hopper, an expert based at the London hospital, who will be working with Mr Tompkins. It uses

lasers or similar light sources, combined with a light-sensitive drug to destroy cancer cells.

The question of funding the treatment is still to be decided, but Mr Hopper said he was expecting to start the procedure within the next few weeks.

Mr Hopper said: “We are making a commitment that we will treat Mr Tompkins so he will get the light-surgery.

“We are in negotiations with Northamptonshire PCT with the intention of recovering the cost of the treatment, but we do intend to give him the treatment he needs.”

A spokesman for Northamptonshire PCT said: “We have not received a report yet from Mr Tompkins' consultant or an application for funding.

“If we receive a report from his consultant recommending that we fund it and if there is clear evidence that photodynamic therapy is the most appropriate course of treatment for Mr Tompkins, then we will be very pleased to consider it.”

Hi all, just thought I would post an update on my Mum's progress as it may help others to know what has happened and what the PDT experience is all about.

When I last posted in July my Mum was going through the PDT injection and the op to expose the tumours to the laser light....

For the record the injection is not a normal injection, it lasts about 30 mins and is moderately unpleasant as the drug to be injected is very thick and it takes a while to be injected. After the injection we had a couple of hours to get her back home into near total darkness - not easy getting from central London to Essex in the middle of the rush hour!
It should also not be underestimated how much effort you need to darken a normal house - cardboard over the windows, very low power lights, dim the TV, tape over all those bright LEDs on everything from phones to fridges (and even cover over the fridge light)!
After 3 days of darkness resting at home we had to get Mum to hospital in central London for the laser op. We left at 9pm hoping to miss most of the summer sun, but even at that time it is incredibly bright so we had Mum all covered up in the back of our car wearing sunglasses, scarves, gloves and hat and sun umbrella - quite an unusual sight!
The op was pretty straightforward, but she needed a few days to recover in hospital before going home as she suffered with dizziness and poor balance (due to drugs she had for pain control during and post op). She did suffer from a LOT of pain post op, the severe pain subsided after a few days, but she was on string pain killers for a good few weeks.
We had the same drama going home as we needed to leave at night with minimal light exposure.
Getting home was a relief to Mum and she recovered quite well. But taking the cautious end of the advice she waited 3 weeks from the injection before exposing a small patch of skin on her upper arm to sunlight for a few minutes. This did not go well and she ended up not only with a very nasty sunburn, but it also seemed to wither the muscles/tendons under that patch of skin and it still look bad 3 months later! So here is a warning be VERY careful before exposing skin and only do a very small area for a very short period of time (say 1 to 2 mins max). If all goes well you can always repeat the next day in another area for a bit longer, if it does not go well you have limited the damage.
So Mum stayed in dark for another week but gradually increased the amount of indirect ambient light.
At the moment Mum seems to have recovered well and is fully back in the light. The PDT seems to have done the trick with the mouth cancer, she needs to go in for a minor op next month to 'tidy up' and remove a tooth that has been damaged and would most likely fall out soon anyway. So that is all good news.
I must admit we are not too happy with the surgeon who did the PDT op. So far he has failed to turn up to the 2 post op checkups that we have had, so she saw junior registrars instead who had no prior knowledge of the op she had gone through!!

I will post again in a few months or sooner if we have any more news or questions to answer in the posts. Meantime we will be going on the walk on Sunday so we may see some of you there?

Hi Alan

Really good news to hear that you mother is doing so well and in such a short time since June

Your posting is really helpful, it is truly amazing and lets hope the procedure is offered to more people.

I can see the down side with having to stay out of the light etc, if offered PDT or RT, I think I would have gone for the PDT. Side effect with RT last for months (forever) it can be brutal.

Keep posting, it a shame that the after care is let down by sloppy dr's.

Regards


Tony

Hi, yes staying out of light in mid-summer can be difficult and frustrating

As per the other posts/links PDT treatment has been around for more than 10 years but is not so well known. I would encourage anyone with a mouth cancer to at least ask their consultants to see if it is an option. My Mum actually had surgery, followed by the max course of Radiotherapy (RT), then followed by the PDT in the space of about 9 months. When she was assessed for the op the surgeon thought an op alone would suffice, after the op failed to remove a sufficient safety margin around the tumour the options provided were either further very dramatic and disfiguring surgery or RT. Mum opted for RT and as you say that is indeed a very tough option too. It was only a few months after the RT that another tumour was spotted and this was when PDT was first offered as an option. With the experience of all these treatments Mum has said that she would have preferred the PDT first before the RT, if that had been offered. So I would like more people to know about PDT, and more patients or relatives to suggest it when they discuss options with their consultants. N.B. PDT is not suitable for all mouth cancers - the main limitation is that the tumour has to be in the upper layers of the tissue so that it can be exposed to the bright laser light that starts the process of killing the cancer cells. If a tumour is too deep or inaccessible then I do not think PDT can be used.

Yes it is a shame about the PDT consultant she saw letting her down post op. But the main thing is he seems to have done a good job with the treatment so for that we are all greatfull.

Laser Technique Fights Cancer With Light
ScienceDaily (Jun. 6, 2008)

quote:

When Sammie Bush mentioned to his doctor that he sometimes felt something in the back of his throat, he didn't expect to learn that he had cancer or that he would be the first patient at the University of Illinois Medical Center at Chicago to undergo photodynamic therapy -- a new procedure that uses light to destroy cancer.

Bush's physician, Dr. H. Steven Sims, assistant professor of otolaryngology and director of UIC's Chicago Institute for Voice Care, determined that surgery would not be enough to completely remove Bush's cancer.
Using a laser technique that pinpoints cancer cells, Sims removed the cancer from around Bush's vocal folds without affecting his ability to use his voice. The worst side effects may be a sore throat for few weeks, and the need to cover up to avoid sunburn.
Photodynamic therapy has been used in other contexts, but its use to treat cancers of the throat is recent, said Sims. "Most importantly, the sensitivity of the voice box to other cancer treatments makes this treatment option particularly significant," he said.

Link to full article: Laser Technique Fights Cancer With Light