1 Topic by ukmember (edited by ukmember Mon, 16 Jan 2006 12:05:09)

  • Registered: Mon, 16 Jan 2006
  • Posts: 148

Topic: Photodynamic Therapy

My husband was diagnosed with cc in November.. Early scans suggested that the tumour was confined to the bile duct and the decision was taken to resect. Unfortunately during the op it became apparent that there had been a spread to the omentum. Liver, lungs, gall bladder and pancreas are all apparently unaffected.

My husband returned home mid Dec and since then we have been concentrating on building up his strength. Now he has good appetitie and energy, although he is very thin.

He has had no chemo and the proposed next stage treatment is PDT with Photofrin. Does anyone have any experience of this? I know that it is non invasive and has few side effects. A clinical trial was terminated because those having the PDT did so much better than the control group, it was considered unethical to withhold the treatment from them. http://www.nice.org.uk/page.aspx?o=212231

Here is the UK there is also PDT treatment with Photoflora  - billed as new generation PDT. There are no clinical trials as yet but I wonder if anyone out there knows anything more. The claim is that it can treat deeper tumours and the side effects of photsensitivity last for 3-4 days as opposed to 30 plus days. http://www.homeonthewww.com/xytos/biotech_how.htm



What about complementary treatments? my husband is taking anti oxidants, Co-enzyme 10, IP6 and AHCC.

I think this site excellent and my congratulations to the people who assembled it.
Well done also the the McCrea family for your drugs summaries. I would be very interested to hear what results you have with Avestin.

Patricia London England

  • Registered: Mon, 16 Jan 2006
  • Posts: 2

Re: Photodynamic Therapy

Hi Patricia,

Sorry to hear about your husband.

I hope the photodyamic therapy works.  I should state I have no experience with this but what I have read is that it is often used for palliative treatment, that is to ease pain or other discomfort but is not a recognised treatment that may extend survival.  Again that is my reading of PDT, I could be wrong.

Is there any chance your husband could enter a clinical trial in the UK for Avastin.  I don't believe Avastin is approved yet in the UK.  I am being treated at Duke and I keep hearing how Avastin has made such a huge difference in their approach to treating patients with cancer.  I think everyone at Duke is on Avastin just about.

Since I have 4 different drugs it is hard to know what combination  or which one is effective--gemzar, oxaliplaten, avastin and Tarceva.  As I mentioned, I don't believe either avastin or Tarceva are approved and marketed in the UK yet, but I may be wrong. 

Let us know what you find out about PDT and how your husband is doing.

I will be thinking about both of you and keeping my fingers crossed.

Best wishes,

Alex.

  • Registered: Mon, 16 Jan 2006
  • Posts: 148

Re: Photodynamic Therapy

Thank you for your reply.
How are you reacting to the cocktail of drugs you are taking? what are the side effects and what are the results of the treatment in your particular case?

WE are going to see the doctors about the treatment and I will ask what the effects of PDT are?

Patricia

  • From: uk
  • Registered: Sun, 08 Jan 2006
  • Posts: 200

Re: Photodynamic Therapy

patricia,

I am very sorry to hear about your husband.  I hope that he is doing ok.  We live in the UK also - i have not met anyone so far who has this rare type of cancer in the UK so I am very interested to know who is treating your husband.

my dad (61) was diagnosed with cholangio in July 05 at The London Clinic, Harley St.  He was admitted straight away to Charing Cross then transferred to Hammersmith for surgery.  The surgeon who performed the first op said that he could not remove the tumor.  We got a second opinion and my Dad was referred to Prof Lodge in Leeds. (St James Hospital). He said that the tumor should have been removed first time round and performed a successful second op on my Dad.  My Dad had a CT scan yesterday - we are waiting for the results.  I feel very annoyed that my Dad had to go through the first op needlessly and I believe that the surgeon was negligent.  Prof Lodge was fantastic and everybody in Leeds to great care of my Dad (he had the surgery at the Bupa Hospital, Leeds).

Some peoople say that the cancer will come back, some say that my Dad could be cured.  I know that the second op has given my dad the best chance and i just hope that this is the end of it.  Sometimes it is just so hard though to try to get on with life.  I feel annoyed that we are so behind in the UK in terms of the chemotheraputic regimes available, this is especially evident when reading the posts on this board.

Jules

5 Reply by ukmember (edited by ukmember Wed, 18 Jan 2006 14:13:46)

  • Registered: Mon, 16 Jan 2006
  • Posts: 148

Re: Photodynamic Therapy

I am very interested to read about your father's experience. Did they give you a reason why they couldn't remove the tumour. Was it because of the position? Did your father have scans to establish that there was no spread from the bile duct? How is your father doing now?

In my husband's case when they started the operation and looked inside they found that there was also  cancer on the covering of the bowel so they decided since it had spread they couldn't proceed.

We were treated at the Royal Free in Hampstead and have now been transferred to University College Hospital. We thought my husband was going to have PDT but the consultant says that he can only have the PDT if he is part of a clinical trial, so there  is only a 50% chance he will be in the PDT group. We asked if this treatment was available anywhere else privately and the doctor said no. Tomorrow I am going to ring the London Clinic, the Wellington and the private wings of the major hospitals to confirm that this is so. Though the consultant says there is no evidence that PDT makes a significant difference with cc, it is non-invasive and there are few side effects. My view is that nothing can be lost by doing it, so why not try. I would appreciate it if anyone on this board can offer any information about where PDT is available in UK, Europe or the States.


We have been offered a place in another trial for chemo - gemcitabane alone compared with gemcitabane plus oxyiplatin. WE have'nt made a decision yet about what to do next. I asked the doctor about some of the drugs I have read about here - like Avestin, and generally they were not encouraging. Their view is that since cc is so rare everyone is 'experimenting', whether they call it that or not.

Is you father going to have chemo? if so what?  is he going to continue with the treatment in Leeds? I would like to hear how he gets on and I wish you and your family all the best.

Patricia

  • From: uk
  • Registered: Sun, 08 Jan 2006
  • Posts: 200

Re: Photodynamic Therapy

hi, in my dad's case the tumor had spread from the bile duct into the liver and was actually covering about 60% of the liver.  During the first op the surgeon gave him RFA (Radio frequency ablation) which did kill off alot of the cancer cells however the reason why the first surgeon did not remove it was because he said that it was too dangerous as it was too near to the vena cava.

Prof Lodge operates with aggressively on these tumors.  We consulted surgeons in the US (Sloan Kettering and Mayo Rochester) nobody was prepared to operate.  We we referred to Prof Lodge through Prof Williams at the Cromwell Hospital.  Prof Lodge told my Dad that the tumor peeled away quite easily from the artery. 

My Dad had a CT scan this week - the radiologist had some concerns about enlarged lymph nodes, however they think that it is due to infection (my Dad keeps getting raised temps) - (if anyone else out there has any info that may help on this then please reply).  Prof Lodge said that my Dad will not need chemo, he was quite dismissive of it also.  Just before the second op my Dad was randomised onto a trial at Hammersmith to recieve a course of gemcitabine and cisplatin, we were told that the best that chemo could do is to 'extend life.'  I am concerned that maybe my Dad should be seeing an oncologist - reading some of the posts on this site and others it would appear that some patients are held stable on chemo for years and years.. could anyone out there advise me if they have any info on some of the more promising drugs available? - i know that we are limited in the UK as to the standard of chemo drugs available however we can get hold of promising drugs privately.

Patricia, I would advise you to seek second opinions if you can - keep on challenging and questioning the drs and get informed.

All the best to you and your husband at what is a very difficult time.

Jules

  • From: Denmark Europe
  • Registered: Mon, 09 Jan 2006
  • Posts: 20

Re: Photodynamic Therapy

Hi

Where are you patricia going to get the photodynamic therapy is it a clinical trial?

Randi

  • Registered: Mon, 16 Jan 2006
  • Posts: 148

Re: Photodynamic Therapy

There is a clinical trial starting in the UK at University College Hospital in London. We have also researched availability in Europe.
It is also available in France and in Holland. If you like I can send you the addresses.

PDT is not a cure but it has the effect of shrinking the tumour sufficently to allow bile to drain, because as the oncologist pointed out to us, it's not the tumour that kills but the effect that it has on the liver when bile and other toxins cannot drain.

  • Peter
  • Peter
  • Moderator
  • Offline
  • From: Vermont
  • Registered: Thu, 02 Feb 2006
  • Posts: 235

Re: Photodynamic Therapy

I have no direct experience or knowledge of Photodynamic Therapy.  There are however a number of posts on the John Hopkins site for CC from patients who have tried it with mixed results.  Below is a link to one post.
http://162.129.103.56/N/n.web?EP=N& … 2143871064

The JH site uses older forum technology and the searches are cumbersome but if you enter 'photodynamic' into the search box, and try it on a number of the different date ranges for posts at the bottom of the page, you will get some hits.

-Peter

  • Peter
  • Peter
  • Moderator
  • Offline
  • From: Vermont
  • Registered: Thu, 02 Feb 2006
  • Posts: 235

Re: Photodynamic Therapy

My apologies.  The link I posted above was cut off.
Here is the short link to the John Hopkins CC site.
From here you can enter 'photodynamic' into the search box.

http://pathology.jhu.edu/gbbd%5Fchat/

  • Registered: Fri, 06 Jan 2006
  • Posts: 258

Re: Photodynamic Therapy

We consulted with a Dr. Ian Renner in California about PDT, but Mark was not eligible for this kind of treatment because he has "intrahepatic" cholangiocarcinoma.  He explained that the photo-dynamic therapy is useful for extra-hepatic only.

  • From: Denmark Europe
  • Registered: Mon, 09 Jan 2006
  • Posts: 20

Re: Photodynamic Therapy

Hello Patricia.

Sad to hear that your husband has been admitted but at least he is being taking good care of at the hospital.

I am very interested in the adresses for the PDT trial you mentioned starting. Is it this trial your husband is going to take part in?

All my best wishes for you and your husband.

Kind regards Randi, Denmark

ukmember wrote:

There is a clinical trial starting in the UK at University College Hospital in London. We have also researched availability in Europe.
It is also available in France and in Holland. If you like I can send you the addresses.

PDT is not a cure but it has the effect of shrinking the tumour sufficently to allow bile to drain, because as the oncologist pointed out to us, it's not the tumour that kills but the effect that it has on the liver when bile and other toxins cannot drain.

  • From: Denmark Europe
  • Registered: Mon, 09 Jan 2006
  • Posts: 20

Re: Photodynamic Therapy

Hello Patricia

Has your husband had the photodynamic treatment yet?

I would to have the adresses for the places you have researched that could offer photodynamic therapy in Europe.

I hope your husband is feeling better.

Kind regards

Randi

14 Reply by ukmember (edited by ukmember Fri, 17 Feb 2006 04:22:31)

  • Registered: Mon, 16 Jan 2006
  • Posts: 148

Re: Photodynamic Therapy

My husband should have had the PDT last week but was not happy that the post procedural care was good enough. After they inject the dye you have to avoid bright light. He is in a brand new hpspital and it is full of light. They put him in a south facing ward with light streaming in all afternoon and  the only protection he would have had would have been a thin curtain. He would have had to stay in that space for seven days in total. He didn't feel there was enough protection and they didn't have a single room to give him. He wasn't prepared to take the chance that he would maybe be burned. By that time he wasn't eating anything was getting depressed and had lost 3 kgs, so he checked himself out .

I don't know what we will do next. He will have a stent put in and they will probably do the PDT at the same time.

WE are going for 5 days to the Bristol Cancer Centre for alternative treatments and to kick start our fight back against this disease. My husband is firmly of the opinion that the most potent way of him dealing with this illness is through his own actions and therapies that empower him to build a stronger immune system .  As yet we have refused chemo and will probably make a decision when we come back from Bristol.

Two centres in the UK are carrying out PDT for cholangeocarcinoma:
Mr Steve Perriera at the University College Hospital in London. They will be recruiting for this trial (Stage 3) very soon.

Mr Ian Tait at Ninewells Hospital / Medical School in Dundee, Scotland.

In Europe;


AMC Academisch Medisch Centrum
Meibergdreef 9
1105AZ Amsterdam Zuidoost
Tel:  020 5669111

Also Nantes in France (google for further details.)

Hope this helps.
Best wishes

Patricia

  • From: uk
  • Registered: Sun, 08 Jan 2006
  • Posts: 200

Re: Photodynamic Therapy

patricia,

I am sorry to hear that the hospital were not able to provide an adequate standard of post op care, are you NHS or private? - I would have thought that private would be better..

I admire your husbands strength and determination to gain some control over this - I think that it is all too easy to allow the conventional medics to take over - and in the case of cc chemo is undeveloped and so hit and miss.. my dad is reluctant to try chemo, he has been told that there is only a 20% chance of chemo working and if he goes down that road it would severely limit what he can do in the time that we have. 

It is a difficult decision to make, and we feel so helpless, I suppose that all we can do is support them in any decisions they make and keep searching for hope.

Best wishes

Jules

  • From: Denmark Europe
  • Registered: Mon, 09 Jan 2006
  • Posts: 20

Re: Photodynamic Therapy

Thank you for the adress info.

How is your husband doing and how are your plans now? Has he had the PDT yet.

Looking forward to hearing from you.

Best wishes Randi

  • Registered: Mon, 16 Jan 2006
  • Posts: 148

Re: Photodynamic Therapy

Hello Ranner,
Based on our recent experiences we have decided to have PDT in a private hospital.

They have now finalised the details for Phase III Study Photostent 2, so that it looks set to start at the end of March  Details of this study are posted on the National Cancer Research Network website. 

Because of the rarity of this disease they may be open to registering people who in the EU like Denmark. Why not give it a try?

best wishes

Patricia

  • Registered: Mon, 16 Jan 2006
  • Posts: 148

Re: Photodynamic Therapy

My husband will have the dye injected today (Sat) and on Monday will have the PDT. On Wednesday he will have a metal stent inserted and the biliary tubes internalised.
Wish us luck and I will keep you posted on progress.

Patricia

  • From: Ouray, Colorado
  • Registered: Thu, 23 Feb 2006
  • Posts: 85

Re: Photodynamic Therapy

Patricia-

Thinking of you and your husband today and all this next week.  I will be most anxious to hear about PDT, as your postings are the first I have ever heard of this.  Wishing and praying for the very best of outcomes.

Your post to Jules had some good info and gives me hope.

-Caroline Stoufer

-

20 Reply by ukmember (edited by ukmember Sat, 11 Mar 2006 17:06:31)

  • Registered: Mon, 16 Jan 2006
  • Posts: 148

Re: Photodynamic Therapy

Thank you Caroline,
My husband had the dye injected today and is now sitting in a low light room. He has to avoid bright sunlight for 30 days. No problem for us here in London where the weather is really dull. On Monday he will have the PDT. I will keep you posted.

Some good news. The blood tests done yesterday are all normal or very close to normal. ALP and GGT are raised but I have just read an article saying that high doses of milk thistle can help with this. Bilirubin is normal (16);  considering it was 600 in December this is a very good sign that the biliary drains are working.

I asked the doctor about the scans, he said he would have to look at them with the radiologist on Monday but there is no obvious sign that there has been any spread to other organs.

My husband appears to have some ascites (fluid in the abdomen) which is not a good sign. They will check it out on Monday and probably drain it at the same time. My husband has had this before after his operation when they drained it and it didn't recur until now. So let's hope for the best.

Thank you for your support and kind thoughts.
Patricia.

  • From: Denmark Europe
  • Registered: Mon, 09 Jan 2006
  • Posts: 20

Re: Photodynamic Therapy

Dear Patricia.

I will pray that the procedure will be succesful this will give you longer time together.

I have asked my dad if he would try pdt but he decline since it is in england and he doesnt speak english.

Would you tell me the name of the hospital where you are having the pdt.

Are you having to pay yourselves could tell an estimated amount.

I cross my fingers for you. My dad is jaundiced again and is going in on monday hopefully to have the stents replaced allthough last time the said that they couldnt changed them anymore because the tumor is hard as wood, so it is very difficult for them.

Just had a thougth is your husband in room without other patients so now one accidentaly lets sunshine in?

Best of luck to you both

Randi

22 Reply by ukmember (edited by ukmember Sun, 12 Mar 2006 06:05:32)

  • Registered: Mon, 16 Jan 2006
  • Posts: 148

Re: Photodynamic Therapy

Thank you for your kind words. We are quite optimistic that this treatment might help. It can also be repeated if the patient is prepared to put up with the restrictions on exposure to light. I heard of a patient who had four treatments and is 4 years survival post diagnosis.

Have you spoken to the doctors in Denmark about the possibility of PDT? Maybe it is available in another Scandanavian country where your father might feel more comfortable. Please email me at drav62@yahoo.com and I will give you a contact where you can find out where trials are being done closer to Denmark or possibly even in Denmark. I have found that doctors are not very well informed about this type of treatment and don

  • Registered: Mon, 16 Jan 2006
  • Posts: 148

Re: Photodynamic Therapy

I have had another thought. There are only 600 cases of cc in the UK every year. That amounts to 1 in 100,000 of the population. In Denmark where the population is very much snaller, the experience that doctors have with this rare disease is probably very limited and therefore they are unlikely to consider non- traditional treatments. They may not even have the right equipment /machines, although PDT is widely used in oesophigeal cancer.

  • From: uk
  • Registered: Sun, 08 Jan 2006
  • Posts: 200

Re: Photodynamic Therapy

patricia,

i have read alot of very encouraging reports of PDT, it certainly looks like a very promising treatment - good luck, jules

25 Reply by ukmember (edited by ukmember Tue, 14 Mar 2006 09:17:32)

  • Registered: Mon, 16 Jan 2006
  • Posts: 148

Re: Photodynamic Therapy

My husband had the treatment yesterday. Felt a bit poorly afterwards but today he is back to normal. The doctors drained the ascites. They are not sure if it is a sign that the peritineum has nodules.
Now I think we will try to get on with business as usual. Concentrate on alternative approaches  to self healing and hope for the best. The next step is to try and build up strength through exercise and good diet.
I have asked my GP to monitor my husband's liver function by regular blood testing so that we can keep an eye on how things are developing without having to go the the hospital.