Search Results for 'gavin pdt'

Hi Moonpie,

PDT for CC is not really new either and has been around for a few years now. Some trials for it have been done and at least 1 I think is underway in the US. Most of the trials seem to have come out of Europe where I understand that it was offered more that in the US I think. The data from these trials and the one in the UK has been mixed and personally, I feel that much more investigation, work, trials etc needs to be done on PDT with regards to CC.

Here is a link about my dads experiences with it –

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1940

As to how it works, they would inject a patient with a chemical as you say up to 48 hours before they do the treatment. The chemical, Photofrin spreads through the body’s cells and masses in the cancerous cells. Then they go in with the laser and when the laser hits these cells with the Photofrin in it it reacts with the laser and hopefully attacks the cancer. That is of course just a very basic run through of how it is supposed to work.

My dad handled it well but there are some very very important side effects one has to deal with, and I can not stress enough how important it is to know about the side effects. A person is extremely sensitive to direct light of various types and in my dads case this lasted for a few months. Direct light would include lights from bulbs and sunlight. Light will affect someones eyes and skin so my dad had to be covered up for a few months when he was outside after having PDT, hat, gloves, scarf and he had to get his glasses darkened by an optician to the strongest level before he had the treatment. As I said, I can’t stress enough the impact that light as a side effect can have with PDT.

But taking all of that into account, he handled it very well! It just took a bit of time to get used to everything before the effects of the Photofrin wore off. Plus in the hospital, he had to stay in his own room on the wards as his skin and eyes would not have been able to handle the lights on the ward. They had to switch the lights in the ward off an draw the curtains so that he could leave his room to get to the showers in the ward. He was in that room for over 3 weeks before he could leave.

Where would your mum prefer to go for treatment, Liverpool or Manchester if she was given the choice? Christies has a very good reputation and much experience in dealing with CC patients. I don’t think that it will take weeks and weeks for your mum to be refered and your GP should be able to help if it is taking too long. Keep in touch and let us know how everything goes.

My best wishes to you and your mum,

Gavin

Hi Moonpie,

Thanks for letting us know how things went with the onc and I am happy to hear that you mum is being referred to either Liverpool or Christies, she will be in good hands at either of these hospitals. PDT is not a new treatment though, my dad had PDT as his treatment with a stent 5 years ago and I wrote a lot about that here on the site at the time. If you want to know my thoughts about it or anything PDT related just ask and I’ll help as best I can.

Please keep us updated on how things go and let us know what the treatments offered to your mum are when she gets to see the team at what ever hospital she goes to. I am happy as well to hear you sounding a bit better about everything and once your mum starts a treatment I know you will all feel even better still.

My best wishes to you and your mum,

Gavin

Hi Elpinki and family,

I welcome you all to the site although I am sorry that you all had to find us here. And I am sorry also to hear about your dad. But I am glad that you have joined us here as you are in the right place for support and help , and I know that all 4 of you will get a ton of both from everyone here.

Thanks for sharing what your dad has been through so far and I know that it must have been hard for you all. I know that as I was my dads carer during his fight with CC so I know what you are going through. My dads CC was deemed inoperable from diagnosis so he was not able to have surgery at all, and hge never had chemo either, he had PDT.

I know you said that your dad went to see several doctors about this but can I ask if all of them were experinced in dealing with and diagnosing patients with CC? The reason I ask is that this is a very complicated cancer to treat and diagnose and it is also quite rare compared to other cancers. I would urge you to seek out doctors who have experience in dealing with CC to get their opinion on things.

As to chemo, did they say that they would not be able to do chemo at all or just not attempt it right now? You said your dad had a stent fitted and my dad did also, they are very common and are used to unblock the bile duct. Did they say anything about attempting chemo once your dads duct was clear again? Did they not mention radiation or anything like that as being a possible option here?

I know that trying to take everything in right now about all of this will be so hard for you all but please do not give up hope. Keep coming back here and let us know how things go for your dad. I know that others will be along soon to offer some of their thoughts to you as well. And if you have questions then ask away and we’ll do our best to help. We are all here for you and we care.

My best wishes to you all,

Gavin

Hi Curlywurly,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum, but I am glad that you have joined us all here as you have come to the best place for support and help, and you will get a ton of both from everyone here. By the way, I too am in the UK, in Dundee and my dad was diagnosed and treated here as well.

My dads CC was also deemed as inoperable from diagnosis for the same reason that your mums was, the portal vein. My dads tumour was too close to it and they felt that surgery would be far too much of a risk for him. My dad had PDT as his treatment alongside having a metal stent inserted to clear up the jaundice. He used to get the odd pain in his right side, sort of like a jag he used to describe it as and he believed it was the stent causing that so it could well be your mums stent causing a bit of pain there. I assume that it is a plastic stent that your mum has?

The tiredness you mention is quite common for this cancer and my dad had a lot of issues with fatigue. He never had chemo at all so his fatigue was down to the CC and not chemo. The shivers and a temperature are a sign of infection and also could be down to the stent getting clogged up. Again, these 2 issues are very common here and hopefully the anti biotics will clear up any infection. Perhaps some pain meds are required just now to deal with the pain in your mums side? My dad used to take paracetamol at first then later on codeine based meds and your mums gp will be best placed to advise on that.

Here is a link to AMMF who are based in the UK and hopefully you will find some of the UK links there of use to you. I know that both you and your mum will be very worried about everything but you are not alone now, we are here with you. Please keep coming back here and feel free to ask any questions that you have, we will do our best to help answer them for you. And please keep us updated on how things go for your mum, we know what you are going through right now and we care.

My best wishes to you and your mum,

Gavin

Carrie,

For many people, my dad included, their first symptom and sign that anything is wrong is jaundice and the yellowing of the eyes and skin and that horrible itching that can accompany the jaundice. My dads CC was also deemed inoperable at diagnosis and he had a stent inserted to clear the blockage in the bile duct which cleared up the jaundice followed by PDT as his treatment.

My fingers are crossed that Travis’s chemo works very well for him and that he will be able to have a resection at some point. Thats good also that he doesn’t have any pain right now and pain is certainly something that should be controlled if it becomes a problem. My dads pain was able to be controlled with paracetamol at first then with codeine based pain meds.

Stay strong and keep coming back here.

Gavin

Hi Susan,

I sure wish that you had some shrinkage to report but lets look at the positives here, stable is good like Lainy and Randi mention. I was there with my dad too after he got his CT after his PDT, tumour was stable and like you I was disappointed at the time. But lets stay positive and my fingers are crossed that your next report does mention shrinkage.

Hugs,

Gavin

Hi Rebecca,

Welcome to the site although I am very sorry that you had to find us all. And I am sorry to hear about your mum. I first came here after my dads diagnosis so I know how you feel right now and what you are going through as well. I’m glad that you have joined us though as you are in the best place for support and help and I know you will get much of each from everyone here.

I know what you mean about trying to get your head around everything and it is tough to do with everything that you have to deal with right now. But from what you say it sounds to me as if you are doing everything that you can to help your mum right now and I know how much that will mean to her. Keep doing what you are doing and keep coming back here as well. If you have questions then ask away and we’ll do our best to help answer them for you.

My dads diagnosis was very similar to your mums in that they thought it may be gall bladder issues, then CC and it took aver 3 weeks to fully diagnose it. His CC was deemed inoperable and he had to decide as well about quality of life issues and treatment. He had a choice of chemo or PDT and he went for the PDT as he felt it would give his the best quality of life for the time he had left.

Like the others have said, chemo or not is not an easy decision to make and there is no right or wrong answers there. It is a personal choice to make and I know that your mum will make the choice that is right for her. When my dad decided to go for the PDT I told him it had to be his choice and I would support what ever decision he made.

I so know that your head will be spinning right now, mine was when I was where you and your mum are. But coming here and everyone here helped me so much and I am sure that this will be the case for you as well. So please, keep coming back here. We are all here for you and we care.

My best wishes to you and your mum,

Gavin

Hi Joel,

Welcome to the site. So sorry that you had to find us all and I am sorry to hear what your dad has been through. He has been through a lot hasn’t he. But I am glad that you have joined us all here as I know that you will get tons of support and help from all of us here. So please keep coming back and keep us updated on how your dad gets on.

I too am from the UK here in Dundee. My dad was diagnosed with inoperable CC back in 2008 and treated here at Ninewells with PDT. He never had chemo and also had a metal stent inserted to deal with the blockage and jaundice. As Marion has said to you, diagnosing CC can be very complex and my dads CC took over 3 weeks to completely diagnose. And also unfortunately, infections can be quite common and I am very happy to hear that your dad has recovered from them.

The link that Marion gave you to AMMF’s website is one that you should definitely follow as I know that you will get a load of info all relating to the UK from it. And I am sure that Helen and others from the South and London will be along soon as well with their opinions about hospitals in your area etc. But, I would say to you that if your dad is being treated by specialists in CC at The Marsden then I would say that your dad is in very good hands indeed. Of course a second opinion re possible surgery is an option and one that you could also look into as well.

I know what you mean about your dad and how he reacted to hearing that his CC was inoperable, my dad went through that as well. Does your dad have the services of a Macmillan nurse? My dad was offered one after his diagnosis and she was a great help to us all during my dads fight with CC.

Please know that you are not alone in this, we are here for you. Keep coming back and ask as many questions as you have and we will do our best to help in answering them. We know what you are going through right now and we care.

My best wishes to you and your dad,

Gavin

Hi Jim,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what you are going through. But I am glad that you have joined us all here as you have come to the best place out there for support and help, and I know that you will get a ton of both from everyone here. Thanks so much for sharing your story with us all and please, no apologies are needed for the length of your posts!

I too am in the UK, in Dundee in Scotland. I came here after my dad was diagnosed back in 2008 and he was treated with PDT at Ninewells here in Dundee. Like you, he also got the services of a Mac nurse after his diagnosis for filling out the same forms and she was with dad since then. Got to say that she was a great help to dad and us throughout and I hope that your Mac nurse will do the same. I also had the need to phone their helpline a few times to speak with a nurse and that was a great help at the time.

Not too much that I can add to what the others have already said to you but I wanted to welcome you here. As to liver transplants in the UK for CC, unfortunately that treatment is not an option for CC patients at the moment but who knows, maybe and hopefully it will be one day. I think that a trial may be on the cards at some point in the future but not anytime soon I think. But do not give up hope. You sound very positive and have a great attitude and it souds to me like you are up for this fight. Yes a second opinion is an option and the links to Helen’s AMMF site that Percy and Marion have given you will help with much infor re doctors and treatment centres in the UK.

As to lentil Shepherds Pie, think I will take a pass on that and perhaps stick with the real one! My dads specialist said that minced beef was a good thing for him to eat as it was easier for him to digest and break down. The sprouts thought I am certainly up for!

I hope that you keep coming back here and I look forward to hearing more from you. And if you have questions then ask away and we will do our best to help in answering them.

My best wishes to you,

Gavin

Hi Jennifer,

When you say used I assume that you mean can someone have PDT and undergo chemo at the same time? If so, I go back to my dads experiences at the time and he was told that it was one of the other, the PDT or chemo. But, we were told that if he went with the PDT then chemo may be tried at a later date. So he took the PDT but as things turned out a year after it he was unable to have the chemo due to the bile duct getting blocked so the chemo would not be able to leave his body.

But, that was back in 2008 and things may have changed since then. I’m not sure to be honest if one can have PDT and have chemo at the same time or closely after or vice versa now. But, I can’t see why not and things will have changed and progressed hopefully since 2008 regarding the use of this treatment. If anyone has any other thoughts or insight then I am sure that they will jump in here. You have to take into account that PDT for CC is still quite experimental, it was back in 2008 and still is today in my opinion. Much still needs to be looked at regarding this and hopefully more research will be done here. I hope that some of that is useful for you.

Hugs,

Gavin

Hi Biscuit,

Thanks for bringing up the topic of PDT and my dad had this as his treatment after his diagnosis of inoperable CC. I wrote quite a bit about his experiences and after effects of PDT at the time and this post may be of interest to you –

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1940

Surgery was not an option for my dad and he basically had the choice of 2 treatments, chemo or PDT. He wanted a quality of life for the time that he had left so he went with the PDT instead of the chemo as the side effects of PDT were not as rough as the chemo. At the time, PDT was I think being trialed through various hospitals in the UK and our local hospital here in Dundee was one of them. Also, my dads GI specialist was quite heavily involved into PDT research so he went with that option. He also had a metal stent inserted for bile drainage.

Did it work for my dad? Tough to say really but it slowed down the progression of his tumour and bought him many more months I would say so yes, it worked in one way but didn’t eradicate the cancer. But in all fairness, we were told that this was a palliatve measure so I guess it worked well for him really.

The side effects stated about the sensitivity of the body, skins, eyes etc to direct light must NOT be understimated at all. I can’t stress that point enough to anyone!!!! It took my dad much longer to get over the stated time for side effects, 4-6 weeks was not nearly enough for him. He had gotten over much of them by the 6 week period, but for him to be completely free of the side effects it took well over a few months.

All of the being siad though about side effects, apart from the light sensitivity he never had any other side effects that we would put down to the PDT. Sure he got pains in the side every now and again, got tired and stuff but we could put that down to the effects of the cancer itself just as so many others could as well. As to whether PDT is better than chemo as a treatment, I can’t answer that at all and I won’t try to. But I guess he got what he wanted from it regarding quality of life etc over the chemo. But then again, people react differently to the side effects of chemo.

If I can help in any way about my dads experiences with PDT then just ask and I’ll do what I can to help in answering them from his perspective and experiences.

Best wishes,

Gavin

buscuit….this link addresses PDT treatments:
http://www.cancer.gov/cancertopics/factsheet/Therapy/photodynamic
But I am pretty sure for our Gavin to come around real soon and share his thoughts with you.
Hugs,
Marion