Search Results for 'gavin pdt'

Hi Julie,

One question that I would ask of the doctors in Indiana who are treating your mum right now is how experienced are they in treating patients with cholangiocarcinoma? Getting another opinion for your mum sounds like a good idea if possible, and there are people here who have been seen at the mayo Clinic. Here is another list that may be iof interst to you.

http://www.cholangiocarcinoma.org/majorcancercenters.htm

Did your mums doctors talk with her about her options if they can get the bile flowing again? I know it might feel like there is no hope here right now, but please do not give up. Lainy is so right when she talks of how you will feel better once a treatment plan is in place for you mum. I felt like you did when my dad got his diagnosis of inoperable CC. So much to take on board anhd deal with in such a short space of time and it was hard. But then my dad got started on his PDT treatment and the fightback began. He felt better that they were doing something for him and I felt better as well. Please do not give up hope.

My best wishes to you and your mum,

Gavin

Hi Tom,

Welcome to the site. Sorry that you had to find us all but I am glad that you have joined us as you will get a load of support and help from us all. None of us are doctors here but we will all help if you can, so if you have any questions then please ask away and we will do what we can to help.

My dad was diagnosed back in summer of 2008 with inoperable CC, and radiation was also ruled out. His GI specialist recommened PDT which my dad had and we hoped that that could be followed up with chemo, but as things turned out my dad couldn’t do the chemo. I don’t know if PDT would be an option for you or not, but perhaps it is something that you could discuss with your doctors? Hopefully others will come along and offer their thoughts to you as well.

Please keep coming back here and let us know how you are doing.

My best wishes to you and all your family,

Gavin

Hi Daddylove,

Welcome to the site. Sorry that you had to find us all but I am glad that you have joined us here. And I am sorry to hear about your dad. I am glad that you have joned us here as you and your dad will get a ton of support and help from everyone here.

I know how hard this is to watch your dad go through this. My dad was diagnosed back in 2008 with inoperable CC and he had PDT as his treatment. I was there beside my dad as he went through that ttreatment and that meant my dad staying in a darkened room for 6 weeks or so after his treatment. I also took my dad to all his meeting with his doctors and was there when we got news etc, so I do know what you are feeling right now even though I am not a medical professional.

From what you have said, it sounds like your dad seems very keen on trying and using more alternative therapies rather than things such as the whipple surgery and chemo and can I ask why this is? You say that your dads doctors say that the only option right now is chemo, so why is he so against this? And if he is against this as you say, has he looked to get another opinion?

I so hope that the treatments you mention do work for your dad and I will keep my fingers crossed that they do. And I am looking forward to hearing from you again.

My best wishes to you and your dad,

Gavin

Hi Janet,

As to whether your mother could be a candidate for PDT, no one here will be able to tell you yes or no either way. I think that the best thing for you to do perhaps would be to speak with your mums doctors and see what they say about this type of treatment but I understand that it is not widely used. Then after doing this if your mum wanted to look further into it then you could look for centres that offer this type of treatment.

In my dads case it was his GI specialist that diagnosed his CC as being inoperable and it was also him that recommended and carried out his PDT. At this point, my dad had not seen an oncologist and an onc had no input at all into the decision to go for PDT. They decided to go for PDT due to the location of my dads tumour, around the portal vein.

Please keep us up to date and let us know how your mum gets on.

My best wishes to you and your mum,

Gavin

Hi Janet,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum. My dads CC was also classed as inoperable when he was diagnosed back in 2008. I am glad that you have joined us all as you will get a load of support and help from us all, and please feel free to ask a load of questions and we will help if we can.

Is your mum taking anything for her vomitting? As Lainy has said to you there are a variey of meds that can be given to try and help with this and this is something that my dad suffered from a lot. He took a variety of and combinations of in order to try and get some help with this and some worked better than others.

I am also wondering why it has taken nearly 2 months you say for your mum to be seen by an onc. Can you not try and speed this up? And I am sure that members here would be able to give you a recommendation for one based on your location. Patty mentions PDT and that is something that my dad had, he never had surgery, radiation or chemo, just PDT. Here is a post I did about my dads experiences with it –

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

I know what you mean when you say that this situation doesn’t really seem real, I think that we all sort of felt like that at first. Having to deal with all of this and so much information in one go is tough to deal with, but you have done the right thing in coming here looking for help and support and that is what you will find here. Please keep coming back and let us know how your mum gets on.

My best wishes to you and your mum,

Gavin

Hi Milky,

Welcome to the site. I am sorry that you had to find us and I am sorry to hear about your dad, but I am glad that you have joined us all here. I know what you are going through right now with your dad as just last year I was walking in your shoes. My dad was diagnosed in 2008 with inoperable CC and I was his carer throughout his fight. He couldn;t have surgery due to the location of the tumour and he couldn’t have radiation either. He had the choice of PDT or chemo and he went with the PDT as he wanted to have a decent quality of life for the time that he had left. And he also had a stent inserted to relieve his jaundice, a metal stent.

I also think that your dad has made the right decision about stopping the chemo considering how sick it was making him. I hope now that he has stopped it that he will feel a bit better and try and make the most of this time. As Lainy says, this is indeed precious time and I hope that you can make some precious moments with your dad.

Towards the end of my dads fight, he went into hospice care and I have to say that the care that he got there was amazing. Nothing was too much trouble for the nurses and doctors and they kept my dad as comfortable as was humanly possible. Does your dad have nursing care or hospice care at home right now?

I do hope that you will keep coming back here as you will get a load of support and help from us all, and we know what you are going through right now and how you are feeling. And please, if you have any questions then ask away and we will all help you if we can.

My best wishes to you and your dad,

Gavin

Hi Marion,

My dad must have been in group A in this trial, stenting and PDT against group B, stenting alone as his treatment went exactly as described in this link. The only difference is that my dad only got one treatment.

Is this an old article, I couldn’t find a date on the link? I think that the trial has long since now stopped in the UK and am unsure if whether PDT is still offered here as a treatment or not.

Is this the date here – DOI: 10.1016/j.gastro.2003.07.015 ?

Hugs,

Gavin

Hi Minnie,

My dad had his PDT back in September of 2008, and he passed away in December 2010.

Best wishes to you and Karl,

Gavin

Hi Nan,

Welcome to the site. Sorry that you had to find us all but I am glad that you have joined us. And I am sorry to hear about your husband. Can you give us some more information such as where was your husband diagnosed and where is he being treated. Is the chemo that your husband is undergoing gemcitibine and cisplatin? And have you considered getting some more opinions on your husbands CC?

My dad was diagnosed back in 2008 with inoperable CC and he had a metal stent inserted and had PDT as his treatment. I hadn’t heard of Sanoviv or antineoplastons and did a quick google on them and came up with this for antineoplastins from wikipedia.

http://en.wikipedia.org/wiki/Antineoplaston

If you use the search function here on the site you can look for any discussions where they may have been mentioned. Did your husbands doctors talk about any other type of treatments that may be suitable? I hope that you will keep coming back here as we will all help you if we can and you will get a load of support from us all. Please feel free to ask any questions that you may have and again, we will all help if we can.

My best wishes to you and your husband,

Gavin

Hi djhappytalk,

Welcome to the site. Sorry that you had to find us all but I’m glad that you have joined us. And I am sorry to hear about your sister. My dads CC when diagnosed was also deemed inoperable and his treatment was PDT with a metal stent inserted as well. And you are so right about laughter being a good medicine, my dad was always full of jokes, most of them being really bad!!

I hope that you will keep coming back here as you will get a ton of support and help from us all. And please feel free to ask any and all questions that you will have and we will all help if we can.

My best wishes to you and your sister,

Gavin

Hi Minnie,

My dad had PDT back in 2008 after he was diagnosed and this was his only treatment, that and a metal stent. I wrote quite a bit about his experiences with PDT, here is a link for you –

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

If there is anything specific that I can help you with then please just ask and I will help if I can. I hope it all goes well for Karl and I will keep my fingers crossed.

Best wishes to you both,

Gavin

Hi Andrea,

Fingers crossed for third time lucky!! I hope it all goes as planned and please let us know what it is that the radiologist has planned for your dad. Glad to hear that your dad also has a private room with an en suite. My dad had that also when he had his PDT done and the en suite was a great blessing, although he wasn’t allowed to leave his room due to the light and his skin!

Thinking of you and your dad today and my best wishes to you both,

Gavin

Hi Charlea,

My dad was diagnosed back in the summer of 2008. We didn’t notice any symptoms of first but dad was seeing his nurse at the local practice about something else and she noticed a tinge of jaundice in his eyes so recommended seeing his gp which he did. The gp saw the jaundice which was a bit worse by then and referred dad up to the local hospital to see a GI specialist.

Whilst dad was waiting to get seen by the specialist, his jaundice got worse. The eyes started to get more yellow and his skin started to change also, and the dreaded itching started, all over. One day dad was out shopping and he suddelnly felt very unwell and weak. As it happened, the shop was beside his gp’s practice so he just went in and was seen immediately by his gp. The gp then got on the phone and told the hospital that dad needed to be seen now and he was sending him up that morning.

I took my dad to the hospital 30 minutes later and he was admitted and stayed there for over 3 weeks while they did all the usual tests, MRI, Ultrasound, Ct and blood tests etc. First they thought it might be gall stones, then gall bladder cancer, then they ruled out pancreatic cancer and finally after 3 weeks they gave dad hhis diagnosis of inoperable CC. From then on, the first thing they did was start to drain the bile to help relieve the jaundice and dad got home for a week. Then he was back into the hospital for another 3 weeks or so to get the metal stent inserted and have his PDT and let the initial effects of that wear off.

Best wishes,

Gavin

Hi wwemerald,

Welcome to the site. I’m sorry that you had to find us all, but thank you so much for sharing your story with us all. From what you have said it sounds like you have a great medical team around you and yes, it is so important to have supportive doctors that care about you and will go the extra mile to help you. Yes no one knows for sure how this disease will progress with each person and a positive attitude is such a good thing to have.

Yes the waiting game is something that we are all familiar with! Waiting for this, waiting for that and then waiting for some more of this, again! I went through that with my dad and it’s not good, but I guess that we all sort of get used to it. He was diagnosed back in 2008 with inoperable CC and he had a metal stent inserted and also had PDT as his treatment.

That is great to hear that you have taken up yoga and I do hope that you get a lot out of it. Yes it is good to relax and I hope this helps, my dad used to get Reikki massages to help him relax and they helped him, a lot! So much so in fact that after his first one, he fell asleep!

I hope that you keep coming back here as you will get a load of support from us all and I am looking forward to hearing more from you.

Best wishes,

Gavin

Hi Lisa,

Welcome to the site. I am sorry that you had to find us all but glad that you have joined us all here. My dad was diagnosed back in 2008 with inoperable CC and he had a metal stent inserted to relieve his jaundice. Once the stent was in, my dad felt an awful lot better and looked better as well. He also had PDT to try and shrink the tumour, but the stent made him feel a whole lot better. Once my dad got home from the hospital he was able to go about his normal day to day life, although he was still affected by the after effects of the PDT. But he was able to go out, eat and do what he did before, but he just took it a lot easier than what he did previously.

Dad also suffered quite a bit from nausea later on and he was given medication to try and deal with this. Has your MIL been given any meds for her nausea? As to my dads pain, when he came back from the hospital after the stent and PDT he was on paracetamol 4 times a day and then that was upped later on to Solpadols 4 times a day then later again changed to 4 times. As Marions has said, pain can be an issue for some but not all and that there are a lot of differing types and strengths of pain meds out there. My dad didn’t suffer too much from pain and when he did, his meds pretty much kept it in check.

I know that all of this is tough to deal with right now and you have a lot of information to try and get to grips with, but please do not give up hope. We have been where you are right now and I know that you will feel a bit better once you know more and have a plan in place to deal with this. In the meantime, please keep coming back here as we will all help and support you through this, and please feel free to ask any questions and again, we will all help if we can.

Best wishes to you and your MIL,

Gavin