Search Results for 'gavin pdt'

Hi Judip,

Welcome to the site, although I am sorry that you have to be here. My dad’s CC was diagnosed last year and was deemed inoperable due to the location of the tumour, was too close a major artery. Radiation treatment was also ruled out from the start and his treatment was Photodynamic Therapy, PDT, with the possibility of chemo to come later. As it turned out, a year on he was not able to have chemo either due to his jaundice.

I agree with Lainy about the 2nd opinion for your brother if you can. I hope you will stick around here as you will get a load of support and information from poeple who have been and are in your situation.

My best wishes to you and your brother.

Gavin

Hi KristiM,

Welcome to the site, although I am sorry that you have to be here. My dad was diagnosed last year and his CC was inoperable so he had PDT and has had no chemo. He has had a metal stent since last year but has never had a plastic one. As I understand it, plastic stents are more prone to clogging and infections so the need for changing them is more frequent.

Has your sister actually been started on diuretics yet? My dad was started on them yesterday and he has swelling in his legs and stomach. His doctor was not keen on them but started them in very small doses. If you use the search function here you will find posts regarding this issue and also the lungs.

My best wishes to you, your sister and your family.

Gavin

Hi Heather,

Welcome to the site, although I am sorry that you have to be here. I cant help you specifically with your questions regarding surgery, whipples and cyberknife. But if you use the search function you will find posts by members who have been through these procedures. My dads CC was deemed inoperable once diagnosed due to the location of his tumour as it was too close to a major artery, so his treatment was PDT.

You have every right to be angry, we have all been there. I know someone will be along soon who can perhaps give you more specific answers to your questions.

My best wishes go to you and your sister.

Gavin

Hi Carlos,

Good to hear from you and also good to hear that your mum is doing okay with her recovery. I hope she is also managing to get some sleep and that any pain is under control.

I agree with Lainy and Marion regarding the need for a team in treating your mum and also for all parts of that team to have access to all the latest scans, tests and info when they need it. In my dads case, he was diagnosed and treated under the NHS which I guess is the equivalent of your state hospital. His specialist and his team diagnosed the CC and concluded that it was inoperable. Had it been operable then he would have carried out the surgery. He also decided the treatment, PDT and carried that out and also followed dads progress for months after and we still see him. When he decided that chemo should be investigated, he refered dad to the oncologist who made the decision that it could not be done. As for CT scans, it is others that do that, sometimes in different hospitals but all the results go back to the specialist. And for local care, dad has his GP’s who manage symptoms etc and who also have access to all the info they need. And all dads medical team are in close contact via the phone, meetings and letters/reports for his files. Everyone definitely needs to be on the same page and know what the other is doing/recommended etc.

I hope your mum’s recovery continues and that you get things sorted with the doctors.

My best wishes to you and your mum

Gavin

Sorry to hear of your brothers troubles just now and I know that the waiting is extremely frustrating. My dad couldn’t get chemo so I can’t help you with that. I hope the ERCP will provide more information as to what is going on with his stent. Have your brothers doctors talked about any other types of treatments? My dad had PDT last year.

My best wishes to you and your brother.

Gavin

Hi Raintree,

Welcome to the site, although I am sorry that you have to be here. Please feel free to ask any and all questions that you have and I’m certain that you will get lots of answers. Yes a 2nd and 3rd opinion does sound like a good idea as does Lainy’s of going to the ER if need be, especially as you say your dad is not eating or drinking and is in pain right now. If you go to the ER then they would have to do something then. And calling his oncologist and trying to get his app moved forward would also be an idea.

As to your question about fluid retention and diuretics before draining, I cant help you with that specifically. My dad was diagnosed last year and had no fluid retention at the time. His CC was deemed inoperable and was treated with photodynamic therapy. Before that, he had a metal stent inserted to drain off the bile and deal with the jaundice which worked for him.

My dads medical team consist of the specialist who diagnosed and treated him with the PDT, then the oncologist to assess for chemo which he couldn’t get and his local GP’s at day care and in the community who look after his day to day needs and symptoms, and his Macmillan nurse, a specialist cancer nurse who sees dad at his home.

I hope you manage to get your dad some help here and I wish you both my very best wishes.

Gavin

Hi Carlos,

Thats good that your mum seems a bit better each day and that her meds seem to be working. Visits from family and friends are indeed positive and will no doubt help her mood. I know when my dad sees some of his old friends it works wonders with his moods.

As to chemo or not, well for my dad I said to him it would have to be his choice if he should start it or not. He was initially treated with PDT last year with a view to maybe doing chemo later. As it turned out, we found out this week that he was not suitable for chemo, but if he was suitable, it would be his decision to do it or not if it was offered to him. I couldn’t make that decision for him and my mum also agreed with that. Radiotherapy was never an option for him.

When my dad met the oncologist or his specialist, I was always there with him as that is what he wanted. He also told me that I could ask any questions that I wanted of the doc’s and raise any issues that I thought needed to be discussed. Also, when the docs would ask dad something and he would answer, he also told me to mention things that he may have forgoten to say in his answers, or if dad was just wrong in what he was telling them. I dont know if this approach would be suitable for everyone, but it is the way that my dad wanted to handle things. And doing things this way meant that he could ask me what was discussed etc if he forgot something at a later date, which he does quite a bit. It also makes it easier when we go to see his local GP or the GP’s at his day care if I know what was discussed etc with his specialists.

I also very much agree with what the others have said regarding taking notes and having questions prepared and ready to ask. The information can seem overwhelming as Marion points out. Again going back to my dads situation, sometimes he seemed like he wasn’t taking the information in, especially if the news wasn’t great, so it helps to have someone else there who can take it all in.

Hope some of the helps.

Best wishes to you and your mum.

Gavin

Julia, I’m so, so very sorry to hear this about your sister. It’s so cruel and awful, and just not fair.
There is more you can explore: and perhaps you can talk to the surgeon and her oncologist about these things.
Some things we explored for my mum were:
– Radiotherapy (inc microwave ablation) – but that depends on the position of the bile duct tumor and liver tumor. We spoke directly to one of the top guys at Leicester Hospital about this; sadly not suitable for my mum but who knows – it could be something that could help your sister? http://www.acculis.com/guide-to-mta/
– PDT – Gavin has filled you in with the info here which has worked wonders for his dad!
– Chemo
– Alternative therapies – my mum looked at mistletoe therapy which can work well in conjunction with Chemo and take away the symptoms of chemo. It can even be administered more gently by GPs. This is becoming a more recognised therapy by some conventional doctors and can even be given on NHS.
– Above all, being positive, which you are so good at – and it does work.
Don’t give up hope Julia, your sister needs you more than ever, and it sounds to me like you are her guardian angel.
Wendy xx

Hi Ken,

Welcome to the site, although I am sorry that you have to be here. My dad has CC and was diagnosed last year. He was 64 when diagnosed.

No experiences to offer on surgery as my dad wasn’t a candidate for it. He had PDT as his treatment, but I understand that that is more common a treatment in Europe, we are in the UK, although I do remember someone here who’s mum was undergoing PDT somewhere in the US.

Best wishes and good luck to you and your family.

Gavin

Hi April,

Welcome to the site, although I am sorry that you have to be here. As everyone else has said, this is indeed a great site where you will get loads of support, knowledge and sharing of experiences. I hope that will get as much from being here as I have.

My dad was diagnosed last year and his CC was deemed to be inoperable, so no surgery or radiation. He underwent PDT as his treatment and a year on, he is still fighting this as best he can. Like all here, he has good days and bad days but his sense of humour and a positive outlook definitely help.

My best wishes to you and your mum.

Gavin

Hi Julia,

I’m glad to hear that you are feeling a bit better and calmer this morning. It feels good knowing that you are not alone in this fight anymore doesn’t it. I know it’s tough to take all this new information in at first, but I believe that the more you know the better you will be at dealing with everything and also helping your sister and the rest of your family. Maybe thats not the case for everyone, but personally, I like to know as much as I can as it makes it easier talking with dads doctors and also talking with my mum and dad after docs apps etc. My dad forgets a lot of things so I need to be there to remind him of who said what etc regarding his treatment and care.

When you say your sister was transferred to Kings, I assume you mean Kings College London? This place –

http://www.kch.nhs.uk/services/liver/hepatopancreatobiliary-surgery/

If so, it seems like she is in pretty good hands there. Hopefully someone else will be along soon that was/knows someone who has been treated there.

I am keeping my fingers crossed for you that this is not inoperable and that surgery will be an option for your “big sister”. I hope you will both enjoy your 24 hours of tv, gossip and chatter! My dad spent the best part of 7 weeks in the hospital last year, 3 of which were spent in a room on his own after he had his PDT and he said he would have went crazy were it not for the tv he had in his room!

Best of luck to you all and I too hope you enjoy your weekend.

Gavin

Hi Lalupes,

Welcome to the site, although I am sorry that you have to be here. I know what you are going through right now as we have all been there. I know that like me, you will receive tons of support from everyone here and this site and the people here have helped me out a lot.

My dad was diagnosed last year with CC and we were also told it was inoperable. Radiation treatment was also ruled out from the start. I sure remember what that felt like. When we were told all of this, my mum and I were also called into the hospital and the 3 of us were told at the same time by one of the doctors on the specialists team. Once the initial shock wore off, our attitude was ok, that’s what we can’t do so what can we do. I agree with whats been said about hope, attitude and fighting spirit and believe that a positive attitude is a good attitude!

Where in the UK has your sister been diagnosed if you don’t mind me asking? My dad was diagnosed and treated at Ninewells in Dundee. His treatment was photodynamic therapy, PDT. If you want some more info on this then please just ask away or look for some of my posts on it. If I can help in any way I am more than happy to do so.

I know what you mean about the Data Protection Act and the docs not telling the family much. However, I understand that if you sister asks the docs anything then they are obliged to answer her. I know that my dads docs would answer my questions if my dad was there at the time. Also, when my dad was in hospital, his medical records were brought out everyday and were at the foot of his bed each day so they could be updated when required. It also meant that he and us had access to them each day. Is this not the case for your sister?

Here’s the link to the Christie Foundation Marion mentions in her post –

http://www.christie.nhs.uk/home.aspx

I hope you will keep coming back here and keep us all up to date with what is happening.

I wish you all the very best of luck.

Gavin

Lalupes,
Welcome to the site. We are a great bunch of people and are very supportive. You will probably find that we become your second family as you face this cancer.

The difference in opinion is something that happens regularly. If the portel vein is involved, it is usually a no-go on surgery. That said, a couple of our members have had surgery even though there was portal vein involvment, but it required having a heart surgeon and liver surgeon work in conjunction and finding agreeing doctors could be difficult.

This is a very confiusing disease, and to be frank, in a country the size of the UK, a cc specialist still will not see a large amount of patients. I have the same problem in Sweden. We are a small group. I had my original surgery in Edinburgh and loved my surgeon, Prof. Garden. I know that here in Sweden, I can request my records be forwarded to several hospitals..kind of like shopping around for a willing surgeon. Perhaps you could do that too? Some doctors are more daring and more willing to work with other specialists.

We have the same data protection laws going on,so my husband (luckily a lawyer) designed a document for me to sign that allowed him to do and find out everything for me…sort of like power of attorney in the US. This has been very helpful, not only in letting him get information,but it also allows him to do my banking when I am in the hospital and pick up my medicines. You might want to look into something similar.

And dont worry about the panicking. I do it all the time. The truth is this is a very scary disease. The outlook isnt good, BUT anything is possible. We had one member, Jeff, who survived with this disease for almost 10 years. I think of that as a challenge. I can do it too and who knows what is around the corner? Although I would love for my cancer to go into remission or have it surgically removed, it most likely wont. Instead, I think the way to approach this disease is to hang on. The answers and cure isnt here yet, but it might be in 5 years. I know that I am “terminal” now, but that doesnt mean I will be later. It is that hope that keeps me going. The only thing we know about the future is that we dont know about the future.

We have some current UK members that I am sure will chime in soon. But to get you started, you may want to do an author search for Gavin. His dad has cc and underwent pdt therapy and has had pretty good results. You also might want to ask about cyberknife radiation. It is new in the UK (I think there is only one machine in the country), so your sisters doctor might not be familiar with it.

Kris

Hi Elizabeth

My mum was diagnosed April, and her CC is also not operable nor radiation possible. We even pursued microwave ablation for her (being done at Leicester and Bath Hospitals for mainly liver cancers) but because of the siting of the cancer in the bile duct, close to main hepatic arteries the consultant said it is too dangerous a procedure for CC patients.

Gavin’s dad seems to have had great success with PDT which is just great, but again, it seems this is only offered at major specialist centres and not offered to my mum who is cared for by ‘quiet backwater’ NHS trust.

The doctors have discussed statistics about chemo and the upshot is that they don’t think my mum will necessarily benefit from chemo. However, she visited Park Attwood Clinic today (http://www.parkattwood.org) and is seriously considering Mistletoe treatment. For her, they have suggested an intensive treatment of injections over 10 days where they will induce fever like symptoms 3 times to stimulate her own immunity which in turn will ‘fight’ the CC. They said she will spend 3 days out of the 10 feeling really rotten (ie, like real flu with shivers, etc) but seem to think she will tolerate it well (even though she is v. v. weak at the moment) and can stop it at any time. Her oncologist had not heard of other CC patients using this therapy – but was keen for her to try if she is willing. This treatment also seems to be less invasive than chemo and from what I’ve read has a better chance of making her feel better/stronger afterwards. They have said it is not a cure but will improve her quality of life….. and who knows if it will extend it? So my mum is making the decision now about whether to proceed – the initial cost for 10 days treatment is around