Photodynamic Therapy
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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
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.
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.
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/
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&URL=/MCGI/SEND1^WEBUTLTY(15807,657376)/2143871064The 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
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.
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
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
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
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
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.
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
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