Search Results for 'gavin pdt'
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Search Results
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In reply to: Hello everyone – I’m new here
Hi Ron,
Many thanks for your post and sharing your experience with me. It’s always good to meet a fellow Scot, just a shame that it is in this manner.
I’m sorry to hear that the tumours have returned and can not be operated on. I do hope that the gemcitabine treatment works as best as possible and slows down the cancer as much as possible. I remember how I felt when my dad was told about CC and that it was inoperable, a massive shock to the system to say the least. My dad was told that any treatment would be to slow down the progression of the cancer, but would not eradicate it. This meeting was with a younger doc on the overall team, the 2nd meeting was with the specialist. Again, this time the specialist told my dad that any treatment would be to slow down the progression. The first treatment that was mentioned in both of these meetings was PDT, the specialist felt this was the best treatment at that time for my dad. We were also told that chemo was an option, but as I understood it, they couldnt do PDT once chemo had been tried. The doc felt it best to start with the PDT and if needed, then do the chemo after. We will just have to wait and see what the next stage of treatment is. My dad is 64 so I don’t know if this has anything to do with what treatment is suitable. I will keep you updated on how this treatment works for my dad. I don’t know why your surgeon dismissed this as a form of treatment for you. I’d never heard of it beofre my dad fell ill, but from having looked into it, I understand that it is relatively new. From what I’ve read about it now, it can be used as a treatment for other types of cancer.
As far as the treatment at Ninewells goes, I have been very happy with the way my dad has been treated. The specialist doctor and his team have been excellent and have treated us all very well. Very happy to answer any questions that we have had and have spend lots of time with us all. The specialist nurses there have also been excellent and helped my dad with getting a Macmillan nurse to come to see him. She came a few times to see him in hospital and help him sort out some stuff with what might be neeed once he got home. Now that dad is home, she came to see him on thursday for the first time and suggested what help he could get in trying to get to sleep at night. There is someone coming out from the Maggie’s Centre at Ninewells to do Reike type massage on him tohelp him relax and hopefully sleep better. Also, the Macmillan nurse will be coming to see him once a week at home to see how he is doing. The nurses at Ninewells were amazing, nothing was too much trouble for them and to be honest, I have nothing but praise for everyone involved in my dad’s treatment.
I don’t know what the view in Dundee is as to how people in America may or may not get this or that treament. No doubt cost of treatment would be an issue which I assume is related to the level and amount of isurance cover someone has.
Thanks very much for your post Ron. I hope all goes well for you with the CT scan on the 8th of Oct.
My best wishes to you.
Gavin
In reply to: Hello everyone – I’m new here
Hi Kris,
Thanks for your post and for sharing with me. I’m glad that my post was useful to you regarding PDT and if there is anything else regarding PDT that I can tell you about then just ask and I will do my best to answer. My dad never felt the intense heat you talk of you having suffered with the itching. Even after seeing how the itching affected my dad, I can’t even begin to understand how it must have felt for you suffering with the itching and the intense heat.
The piriton tablets seemed to help my dad a bit, buit not enough. I totally agree with you regarding treating the jaundice and how if affects quality of life. When the doc told us that my dad had CC and that it was inoperable, one of the first things he talked of was getting the stent in first to clear the jaundice and that he would feel much better when the itching stopped. Then they would move on to the next stage of treatment.
Am really glad to have talked to you, just sorry that it has to be about stuff like this. I hope you managed to enjoy some of your time in our wee country, and perhaps enjoyed a plate or 2 of our national dish!!
My best wishes to you.
Gavin
In reply to: Hello everyone – I’m new here
Hi Jolene,
Thanks for your kind words, support and for sharing your story with me. Am so sorry to hear about your dad and what you both went through. I’m glad that you shared these good talks together and I’m sure that they meant a lot to your dad as well.
I can fully relate to what you and your dad must have gone through with the itching having seen what my dad went through. He would sit there for hours on end itching and scratching away and it got to the point where he was finding it hard to sleep because of this. The worst part for him was the itching around his eyes and he was constantly taking off his glasses and rubbing his eyes. What was of a great worry to us at this point was that we did not know why he felt like this.
Thats pretty bad that your doc didn’t understand about your dad’s itching. When my dad went to see his GP about this, he hadn’t been diagnosed with actual CC, but was very jaundiced and waiting to go to the hospital. The GP prescribed Piriton which helped a bit, but did not stop the itching. In the hospital, my dad still took the Piriton and still had the itching. It was explained to him that the itch was a result of the jaundice and that the stent when it went in should help. Once the stent was in, my dad also had a billary drain draining the bile duct of blocked fluid into a bag that was attatched to him 24/7. The doc at the hospital described this as a “2 pronged attack”. My dad’s response was along the lines of attack it anyway you want!! After more than a few weeks of itching, he would have tried anything to get it to stop! Clearing the bile duct of the blockage was also necessary before the PDT treatment could be started and the docs wanted to get on with the treatment ASAP, as did my dad.
Peace be to you and your family and my thoughts are with you also.
Gavin
In reply to: Hello everyone – I’m new here
Hi Jeff,
I’m glad the info regarding PDT was helpful to you, hopefully the treatment will be helpful to my Dad! If there is anything specific you or anyone else wants to ask regarding my Dad’s treatment then ask away, I am more than happy to help if I can.
When Dad puts on the hat, gloves and glasses, he may think that he is Michael Jackson, however, he most definitely does not have the same moves! It was very funny to see him all dressed up like that shuffling his feet thinking he was cool! Certainly the nurses and us all had a great laugh as well and a few of them took some photos of him! Although he may have felt like a star, he can not however move like one! My Dad has a great sense of humour and took all of this very well. It’s great for us to see that no matter what is wrong with his body, he hasn’t lost his sense of humour.
Prayers of support to you coming back across the waves from this side of the pond.
All the best
Gavin
In reply to: Hello everyone – I’m new here
Hi Gavin
Welcome to the site; it’s just a shame that you have to be here. I live in Falkirk which, for the benefit of our American friends, is about a 90 minute drive from Dundee. As I’ve said before, Scotland is a small country and so everywhere is close to anywhere else.
I started my treatment at Edinburgh Royal and had 2 resections done there in August 2006 then March 2007. Unfortunately the tumours returned and could not be operated on. So for the last year I have been attending the Beatson Centre in Glasgow. That’s where things really started to get a bit hairy. I had already been told that the only treatment that would be suitable for me would be palliative chemotherapy and that gemtitabine would be the recommended drug. However, I was also left in no doubt that any benefit would be, at best, marginal and that it could have a really detrimental effect on my general health. It was left that I could start the chemo at a later date if I started to show symptoms. So every 4 weeks I attended the clinic at Beatson, was asked how I was feeling, had some blood taken and sent home. Recently I noticed changes and general discomfort so on Tuesday I started my first course of gemcitabine. Everyone tells me that gemcitabine is tolerated well by everyone – I have been feeling dreadful since Wednesday morning! My worry now is that the cancer has spread so much that it is that and not the gemcitabine that is making me feel so unwell. Anyway, I have a CT scan scheduled for October 8 so may get some answers then.
I didn’t mean to give you so much of my tales of woe. You and your family have enough troubles to be getting on with. It is good to see that Ninewells is being proactive in arranging treatment and I will be really interested in hearing how your father gets on with PDT. I mentioned this to my surgeon a year ago and it was dismissed. One thing you will notice on this site is the involvement of insurance companies. Depending on the cover you have you either get very little treatment or everything that’s going. The perceived knowledge in Edinburgh and Glasgow is that Americans get so many different treatments because the insurers pay for it and the hospitals need the income to pay for the facilities. I would be interested to learn if they have the same view in Dundee. The other obstacle to treatment here can be the patient’s age. How old is your father?
All the best to your father
Ron
In reply to: Hello everyone – I’m new here
Hi Gavin,
I was diagnosed when I was in Scotland, though I was stationed first at Gartnavel then at the Edinburgh Royal Infirmary.
I am sorry your father is having to go through this. Thank you for your post as I think I learned more about PDT than from any source. I too had that terrible itching coupled with intense heat (I was so hot when I was juandiced, who knows what chemical reaction was going on in my body to produce so much heat!). The doctor gave me peritin tablets, but they were a joke. From a patient standpoint, I have to say I dont understand why doctors dont take the jaundice more seriously. It can be so terrible that it can really affect your quality of life. There has to be something more for its treatment.
Anway, best of luck to your father.Kris
In reply to: Hello everyone – I’m new here
Thanks Gavin, I have been following all the post about PDT and finally someone who has experienced it comes on board. Sending prayers of support across the waves and hoping your Dad’s results will be the best possible. Michael Jackson outfit hey? Does he have the same moves? Ha! Thanks again for your post!
God bless,
JeffHi there,
My name is Gavin and I’m new here so I thought I would introduce myself. I live in Dundee in Scotland and I am the carer for my Dad. He was diagnosed in August this year with CC. The specialist says it is inoperable due to the fact that it is located close to too many major blood vessels and that any attempt to try to remove it would prove fatal for my Dad.
I hope you won’t mind me sharing his story with you all. Back in July, my Dad went to see the nurse at his local medical centre in Dundee to get his ears cleaned out, he has hairy ears and every so often has wax building up in his ears which the nurse does what she does to clean them out. This time, she noticed that his eyes were slightly yellowish and advised him to make an appointment to see his GP, which he did. He saw the GP who then referred him to the hospital for further tests. So my Dad waits for his expected hospital, which does not arrive. In the meantime, my Dad’s eyes get even more yellow and his skin starts to get a yellowish/brownish colour. As well as this, he is now itching really really badly so he goes back to see his GP. His GP prescribes tablets to try and help with the itching and tries to get my Dad into hospital ASAP. So this goes on for another few days and then the GP phones and says get readdy to go into hospital very very soon. This call came on the Friday evening and the GP thought my Dad would be admitted on the following Monday. Well Monday and Tuesday come and go and still no call comes from the hospital. On the Wednesday morning, my Dad was out at the shop getting a paper and he takes a dizzy spell. Fortunately, the shop was beside the medical centre and my Dad goes into the centre. He was then rushed in to see his GP who took one look at my Dad and then told him that he was definitely going to hospital that very day. The GP said to my Dad that he was “away to get on the phone and start shouting at people at the hospital”, which he did and I took my Dad to hospital an hour later.
My Dad was admitted to Ninewells hospital in Dundee where he then spent the next 3 and a half weeks undergoing all sorts of tests, scans, x-rays and a CT scan. At first, we were not really told anything as to what exactly they were looking for, but my Dad’s jaundice was really bad now. As soon as we were told about the CT scan, my Mum and I started to fear the worst. Rightly or wrongly, that was the emotions and thoughts that we experienced then. The Doc’s said that it might be gall stones which were the problem, or it might be this, or it might be that or it could be something else.No one was giving us any definite information, probably because they couldn’t say for any certainty. I understood that, as hard as it was at the time, I would have hated to be told that my Dad had something very serious but which turned out to be a lesser illness. My Mum always felt that it was soemthing more serious than gall stones though.
After a few weeks in the hospital, one morning my Dad phones and says that the Doc wants to speak to my Mum and I that day. Immediately alarm bells are ringing with my Mum and she thinks the worst. So we both go up to the hospital. The 3 of us then meet with the Doc, one of the junior Docs to the specialist who then tells us that he is 99% certain that my Dad has CC and that it is inoperable. Before this meeting, I feared the worst, but when we were told the actual diagnosis it still felt like a hammer blow to the head. I will never forget looking at my Dad that moment, he had a saline soultion drip in him on one of these tall stands on wheels so he could move with it, he looked stunned, shakey and very scared. Who could blame him?
My Dad stayed in hospital for another 10 days or so during which time they did more tests, an endoscope and other tests and a metal stent was inserted into his side to relieve the jaundice. He also had a billary drain in his side to drain fluid from his bile duct. The next stage of his treatment was to be Photo Dynamic Therapy (PDT), but this would not be until most of the jaundice had cleared.
My Dad was then discharged, but still had the tube is his side so that the PDT treatment could later be performed. As it turned out, we were back at the hospital the next week to see the specialist to see about his further treatment. Looking back at this, this was a day I will never forget. My Dad was quite weak physically at this point. I picked my Mum and my Dad up in the car and we drove to the hospital. Ninewells hospital is a very large hospital complex, one of the biggest in Europe. My Mum has COPD, so what I had to do when the 2 of us were visiting my Dad in the hospital was I had to drop my Mum at the front of the hospital, then go park the car, come back to the front of the hospital and find a wheelchair then we could go to the ward. The ward where my Dad was was about half a mile or so from the front of the hospital. Anyway, the day of visiting the specialist, I dropped my Mum and my Dad at the front of the hospital, then parked the car, then came back and found a wheelchair. I took my Mum down to the ward where the specialist was based, then came back and took my Dad down to the specialist.
We all saw the specialist then who confirmmed what we knew, that it was CC and that it is inoperable. My Dad was doing his best to fight the tears and was looking very shakey. No surprise really considering what he had been told, but I’d never seen my Dad look scared like that before. We were then told about the PDT treatment which my Dad was all up for, as he said “whatever it takes, whatever it takes.” There was a specialist nurse in the Docs office with us then who wanted to take blood from my Dad. She told us that she would wheel my Dad inot the ward to take blood and that my Mum and I should come too. My Mum then struggled to get up and walk out after the nurse and my Dad, I had to help her. The nurse looked back and saw this and saw my Mum struggling. She then asked me who I had brought down in the one wheelchair and I said both of them, one after the other. She looked pretty stunned. That is one moment in my life that I will never forget. I got used to, well as used to as you can possibly get having one of your parents ill and caring for them, then being told that another has this horrible disease and what that will involve for all of us.
3 days later, my Dad was back in hospital for the PDT treatment. He had Photofrin injected into him on the Tuesday then spent the next 3 weeks in a room with the blinds closed and the lights off for the next 3 weeks. The Photofrin was to spread into the most affected cancerous cells in his body. The downside was that it would also spread in lesser doses to all the cells in his body. On the Thursday he had the laser treatment that was to attack the cancerous cells in the bile duct. The laser treatment went throught the tube that he stiil had in the side of his body. He said that the treatment was painless, how he knows this is beyond me, as he was given an annaesthetic type drug that did not completely knock him out, but took him to a state where he did not know what was happening! As the Doc said to us after it, the patient would not feel anything and not know what was happening but would not be unconscious.
Dad spent pretty much the next 3 weeks in his room in the hospital with the blinds closed and the lights off. Storng direct light or sunlight on any part of the skin would make his skin burn like you would with sunburn. This effect could last for anything up to 8 weeks. He could not even go out of his room into the general ward to speak to other patients. When he did leave the room to have a shower, all the lights in the ward were turned off and the blinds on the main windows had to be closed. After a while, he was able toleave the room, but when he did, he had to wear a pair of gloves, be fully clothed, wear a wide brimmed hat and the darkest pair of glasses that you could imagine. His Michael Jackson outfit as he calls it! He does have a great sense of humour!
Well after 3 weeks. my Dad was discharged. The specialist said the PDT treatment had went as well as it could have possibly went. It won’t totally clear up or kill the cancer, but hopefully it will slow it down as much as possible. my Dad still has to wear his Michael Jackson gear on when he goes outside everyday. All he can manage just now though is to go to the local shop to get a paper, then comes home and is knackered. But he is grateful just to get out, and we are grateful just to have him here. This Sunday he has another test, he has to go outside in all his gear but on one of his hands, he has to wear a paper bag instead of a glove. He has to cut a small hole in the bag to expose his skin to the light andsee if there is any reaction. If that small part of the skin burns then he has to fully cover up again, if it does not burn then he can go out without the gloves. If he can go 2 weeks without the gloves, then 2 weeks later he can take his hat off, then if that is okay then he can take the glassess off. He has to take it a small step at a time and try this bit by bit. I know that the future is uncertain, but we will deal with this together and take each day as it comes. My Dad will go back to the hospital soon for another CT scan to see how everything is or is not, and we will deal with that when it happens. Today, I am just happy to have my Dad home and see my parents together. If something happens tomorrow, we will deal with it then, today, we are all just happy for today.
I’ve just looked back at this post and realised how long it is. Many thanks to all of you who have taken the time to get this far and I apologise for the length of this! My thanks also to those who provide this wonderful site and to those who post here. I’ve just recently found this site and joined it and have found it a great inspiration to me. I don’t know if my and my Dad’s story will help you, but it hleped me a lot to write about it.
Love to you all
Gavin
