Photo dynamic therapy (PDT)

Hi Cathy

This is a new treatment that I have not heard of before. I searched the group too for you and you are the only person that has mentioned it. Sorry that is not of much help.

I would suggest speaking to your team about having to keep out of the sun and the precautions you need to take. Once you know this it may seem more manageable and you may be able to do it. Hopefully it's ensuring you have sunscreen on and hats/ covered skin etc.

Sorry I am not much help.

Hi Gina,

This is what concerns me! not a lot of people have heard much about it.

Apparently used quite a bit in the States for lung Cancer - but used more in this country for acne and skin cancers etc.

However they are getting good outcomes for pre- cancerous cells in the lungs and windpipe on early stage - or so they tell me but not a lot of data to support this! The burns you can get from daylight is horrendous like 3rd degree burns apparently (the thought of wearing sunglasses for 6 weeks in doors and out and total cover up - maybe a Burka would be helpful?) - I think my mental health would seriously suffer with this treatment or maybe I just need a month or so to have a break from it all. Sorry that sounds so ungrateful - so lucky I have the choice at the moment when so many haven't.

Prays and Best Wishes to all......

XX Cathy

Hi Cathy

I’ve not heard about this treatment either, but have looked it up and it sounds very interesting. All these new treatments are coming through all the time. The good thing is, at least we are coming out of our summer, so if you do have to cover up you won’t feel so conspicuous. Any treatment is scary, the fear of the unknown.  We are here for you x 

Sent a long reply to you lovely ladies.....its disappeared lol..... cyber space xxx

Just wanted to revive this post as I think it might be interesting read for a few.

Although not a big fan on the idea of PDT I have done a lot of research and it is used quite a lot in America with some amazing results on oesophagus cancers and lung.

Because it can blast the same area more than once  - unlike radiotherapy I think they are appreciating the overall benefits for lung cancer patients.

I have decided I will have my quarterly bronchoscopy- see if they still say the abnormal cells are active! And if still advising me to go ahead with the PDT - then I will do.

In fact it's strange how I feel a bit more in control ! Having made the decision myself.

Anyway going to my brothers in Hertfordshire for a little holiday - it will be heavenly just to get out of this house for a little while and away from hospital appointments.

Hope you all have a lovely weekend.

Xxx Cathy

Hi Cathy

Im glad you have come to a decision about which way you are going to go with your treatment, even though you will probably have more questions to ask if that time comes. We all have to think through things ourselves and it does take a bit of time but we have to make peace with ourselves, it’s nice to get some input from others, it’s just unfortunate you had to pick a subject non of us had much knowledge of but it feels good when we come to a decision and as you say we feel better when we feel in control.

You will enjoy your little holiday even more now, a clear head for a while and you’ll be more relaxed. Enjoy yourself you deserve it

Enjoy

Hi Cathy

That sounds a huge advantage for PDT over radiotherapy being able to zap the same area more than once.  Glad you have made a decision and feel more in control.  You'll be able to enjoy your little holiday at your brothers so much more now that decision is made.  A change of scenery and the escape from hospital appointments does us all good.  Have a lovely time.

Hi all...

Having had my quarterly ct scans and bronchoscopy/biopsy  in the month of November  - I have been told ok scans  however the microscopic pre cancerous cells by the resection on the bronchi are active again and spreading.

They now want me to have this PDT treatment in January 2020. I have spoken in depth with a senior surgeon who will carry out this treatment. Yet they still have no data on this treatment and have to loan the laser from York where the photofrin chemical is also prepared and then brought to Manchester!

It would be very helpful if any new members had any information on PDT photodynamic treatment. 

Xx cathy

Hello all....

Just wanted to update you all on PDT Photo Dynamic Therapy -

As I write this I am in hospital having had the laser treatment yesterday on the microscopic cancer cells on the bronchi - they had become very active in November so this decided me to go ahead with this relatively new type of treatment. ( statistics  show that only 48 treatments carried out WORLWIDE last year - 485 cases in the last 10 years worldwide) - having researched PDT as much as I could with the most positive  outcomes in America it still came up with some scary stuff - like a woman in America losing her sight and then a lady in Europe choking on the debri  following the laser work.

Well you can imagine I have gone into this feeling very afraid and yet accepting it is giving me another option to radio therapy and with a possible curative role. I would have been a fool not to have gave it a go.

All the nurses and doctors are intrigued  by my cover up clothing and the fact I will now be sensitive to bright sunlight and indoor light for 6 to 8 weeks - this will be difficult for me as I live alone.

The hospital are keeping me in for a few days monitoring my breathing etc......although not great yesterday - it was manageable! I have another bronchoscopy tomorrow to clear any debri left behind after the laser treatment.  Been strictly doing my lung exercises every 2hours today. Hoping to get home Friday.

Sorry I've not posted for some time if honest I have been so anxious and undecided about this treatment thought it best to keep quiet until ide decided.

I would appreciate if Gina could put this post up so people who are offered the treatment have a sort of reference. I will keep you all posted of outcome.

• Xxcathy

Hi Cathy

Reading about treatments can be so, so scary. You came to a decision and it seems for you, it has been the right one. I do hope things continue to go well for you and that you feel a little reassured that they are monitoring you closely for a few days.

That really is a small number of cases, let's hope you can add to the positive stories. 

Let's hope as you have had it done in winter, that the exposure so sunlight will be minimal. Hoping by spring you will be able to go out without all your camouflage gear on.

So good to hear from you. Also happy that you decided to post about the experience, it will always help the ones that follow in your foot steps.

By posting to this, it instantly brings your post to the top of the most recent discussions page, so people should see it and they should also be able to search in the group too.

There is such a thing as a 'sticky' post which means the post always stays on the front page, but I have never sussed out how to do it. I think it is only the site administrators that have such powers.

Take care and let us know when you are ready how you are getting on.