Search Results for 'gavin pdt'

Hi Vince,

Welcome to the site. Sorry that you had to find us all here and sorry to hear what you are going through. But glad that you’ve joined us all as you’ve come to the best place for support and help and you’ll get loads of each from everyone here.

When you meet with your onc next week please let us know what they say and recommend. My dads CC was diagnosed as inoperable and he was offered 2 choices of treatment, PDT or chemo and he chose the PDT as he felt that that would offer a better quality of life and quality of life was important to him and what he wanted. The decision to do or not do chemo is a very personal one and I would say to you to do what you want to do and you alone. It’s a tough call and there are no right or wrong answers here.

You are doing the right thing though in seeking answers and information, please keep doing that and learn as much as you can. The 100 questions about biliary cancer is a great book and can be downloaded here –

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

Please let us know how things go next week and know as well that we are here for you too.

My best wishes to you,

Gavin

Hello again Gavin,
As I mentioned on the PDT thread, My husband was diagnosed with locally advanced cholangiocarcinoma in January of this year. He is about to begin his third round of Chemotherapy. However, this is another trial of great interest to me, especially since Regorafenib has Health Canada approval and should be available here. But once again, I am completely naïve of the process for participating in a clinical trial. Got any advice?

Hello Gavin,
My husband was diagnosed with locally advanced cholangiocarcinoma in January of this year. The first 6-week battle was to gain control of the unrelenting pain he was enduring. Once that was achieved, we started Chemotherapy. He has finished two rounds. Once the third round is completed, they will do a CT scan to see how well the chemotherapy is working. However, recognizing that chemo is not particularly effective, I started searching out clinical trials. Dr. Kahaleh’s PDT trial is of particular interest. However, since we live in Canada, I’m not sure what to do. How does one get into a trial? Can you participate in a trial even if you don’t live in the centre where the trial is being conducted? Does anyone have any insight/experience they could offer? Please advise. Thanks

Hi Juan,

Welcome to the site. Sorry that you had to find us and I am sorry to hear about your dad. But I am glad that you’ve joined in with us here as you are in the right place for support and help and I know that you’ll get loads of each from everyone here.

Thanks for sharing about your dad. I agree with Lainy about seeking a second or even a third or fourth opinion if you can and I am glad that your dad will be doing so once he gets discharged from hospital. And please let us know how that goes for him.

As to the chemo combination, the other type of chemo in that combo that was suggested to your dad most probably will be cisplatin and that is a common chemo combo for CC. Many of our members or their loved ones have or are on this chemo combo and you can read through the chemo board here http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=16 should you wish to read some of their experiences with it.

Surgery could well be a possibility after some treatments and I would not be ruling that out, others have had that. No metastasis is good to hear as is the relieving of the jaundice and the itching that comes with that. My dad never had chemo or surgery so I can’t share any of his personal experiences with that, he had PDT.

Please let us know how things go for your dad and if we can help then please just ask and we’ll do what we can.

My best wishes to you and your dad,

Gavin

Gavin,

Are you aware of any other U.S. centers besides Mayo and Cornell that are doing PDT for unresectable cholangiocarcinoma?

My otherwise healthy 81-year-old mother has newly diagnosed asymptomatic, locally advanced, unresectable CC. We are seeking supportive treatment that will reduce the probability of cholestasis and cholangitis and improve her comfort/quality of life as her disease progresses.

thanks so much,
Grace Thrall MD
Chapel Hill, North Carolina

Thanks for that Marion. The Photofrin was the drug that was used in my dad’s PDT when he had the treatment back in 2008 along with the stent.

Hope you all have a great time meeting up with everyone at the GI symposium!

Hugs,

Gavin

Hi Rod,

Welcome to the site. Sorry that you had to find us all here but glad that you’ve joined us all as you are so in the right place for support and help and I know that you’ll get a load of both from everyone here. Thanks for sharing your story with us all. Yes you have indeed done very well and that is great that you were able to have the surgery and even better to hear that you are doing so well, long may that continue!

Good luck with the RFA. I can’t share any personal experience with that as my dad had PDT and there is not a lot here on the site about RFA. I did a search for you and came up with this from Percy –

http://www.cholangiocarcinoma.org/punbb/search.php?search_id=866712306

I hope that it works well for you and please keep in touch with us and let us know how that goes. Please know as well that we are here for you and we care.

My best wishes to you,

Gavin

Hi Patzel,

Welcome to the site. Sorry that you have had to find us all here and I am sorry also to hear what your boyfriend is going through. But I am glad that you’ve joined us all here as you are in the right place for support and help and I know you’ll get loads of each from everyone here.

Like Clare, Lainy and Percy have said, I am from Dundee and my dad was diagnosed and treated here at Ninewells in 2008. He also received his scans, consultant meetings and other care from his GP locally here in Dundee as well. I find it strange to say the least that your boyfriend has only received one CT scan since his surgery last December. My dads scans were done every 3 months after he had his PDT. Like Clare says, scan results are not generally available for consultants to view immediately when a patient receives one as an outpatient and I am assuming that your boyfriends CT in June was done as an outpatient? In my dads case once again all of his scans following his PDT were done as an outpatient and he got the results once he saw his GI consultant a week or so later.

Personally I would have thought that your boyfriend should have had scans done every 3 months instead of 6, especially so immediately following his initial surgery or other treatment. A GP to the best of my knowledge would not pass comment on CT results to a patient and that would be the role of the consultant. As regards to the poor treatment that you seem to have received regarding information about everything from the GP and hospital team that is not acceptable and my dad never had to go through anything like that. I would suggest that you try and see a different GP and raise all of the points and questions that you have with him/her. How it works here in Dundee is that a patient is a member of the overall practice and is entitled to see and GP in that practice that they wish to see. All patients used to have an individual GP that was responsible for them, but that has changed now and pateints can insist on seeing any GP they like. Perhaps a different one will be of greater help and more forthcoming with information about everything.

Is the hospital that your boyfriend is being treated at a major hospital such as a teaching hospital, and do you know if the surgeon and medical team at that hospital have much experience in treating patients with CC? Smaller hospitals and teams in smaller hospitals may not be as experienced as those in larger hospitals and that is not just a Scottish issue, it happens all over due to the nature of CC.

My dad spent 7 weeks in an NHS hospital here in Dundee and during that time his full medical file was at the bottom of his bed for us to read at any time should we wished to do so. His GI consultant was also always there for us to answer any questions that we had alongside his other doctors as well. We had no problems getting detailed info about everything and to be honest, nothing was ever too much trouble for all of my dad medical team.

Please keep coming back here and keep us updated on how things go for you both, we are here for you.

My best wishes to you and your boyfriend,

Gavin

Hi Castruman,

Like Lainy says, indeed you are certainly not alone anymore. You now have all of us in your corner fighting with you! The quality of life vs quantity of life debate is one that comes up here quite frequently and my dad went through that as well after his diagnosis. His CC was deemed inoperable after diagnosis and my dad decided that he wanted quality of life for the time that he had left. So that helped him in his decision about treatment and that was why he chose PDT over chemo as his GI doc thought PDT would give him a better quality of life than he would have had had he gone through chemo. I told my dad too that I would support him in whatever decisions that he made and that he should make decisions that he felt were right for him.

And of course, you should make decisions that you feel are right for you and you alone and we will all of course support you all the way in whatever you want to do. We are here for you and yes, I too am sure that we will chat again.

Best wishes,

Gavin

Hi Ghannam,

I too am sorry to hear about your mum and that her doctors are having a hard time in getting a stent placed and working for her. How would your mum feel about getting another opinion from a different doctor? My dad had PDT along with a metal stent after his diagnosis and I wrote a bit about his experiences of that here on the site. Here is a link that may be of use to you –

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

Please let us know how things go for your mum, we are here for you.

My best wishes to you and your mum,

Gavin

Hi Christine,

Yes you are so right about the rollercoster and how it sucks, big time! My dad was offered PDT or chemo as his treatments and he chose PDT over the chemo as that would give him a better quality of life and that is what he wanted. I know that this is a tough decision to make and everyone will have different reasons for the decisions that they make. I always said to my dad that I would support him 100% in whatever decisions that he made and also told him that he should do whatever it was that he wanted to do for himself. Stay strong.

Hugs,

Gavin

Hi Snikwah,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what you are going through. But I’m glad that you’ve joined us here as you are in the best place for support and help and I know that you’ll get a load of both from everyone here.

Thanks for sharing what you have been through with us all. I can’t help with any personal experiences here as my dad was not a candidate for surgery and did not have chemo either, he had PDT as his treatment. But I wanted to join in with the others in welcoming you here. It gets quiet around here sometimes at the weekend, especially in the summer and I know that you will get more responses to your specific question soon.

I hope that your meeting today goes well and that you get some good news from the cardiothoracic surgeon. Please let us know how that goes and what they say. And please keep us updated on how everything goes. We are here for you and we care.

My best wishes to you,

Gavin

Hi Moonpie,

Sorry for the delay in my replying to you, things have been hectic here and still are. Personally, I think that the sooner your mum has been referred and seen by either Christies or Liverpool the better. She will be in excellent hands at either of these hospitals and the teams there will be able to answer all of yours and your mums questions. And of course, she will get the correct and accurate diagnosis and therefore a treatment plan will be advised which you will be able to trust. And trust me, you will all feel so much better once this happens and the plan starts as at that point your mum will be fighting back. I realise that this is a scary and at the same time a frustrating time for you all but it will get better and easier.

From what you have said, I would certainly say that the onc you saw does not specialise in gastro cancers and that is why your mum is being referred to somewhere who really know what they are doing. I do agree though that where ever your mum goes she probably will not be offered a whipples as it would be too risky due to her existing health conditions.

Some links that will provide more info on the testing and diagnosing questions you have –

http://www.ammf.org.uk/cholangiocarcinoma/diagnosis-2/

http://www.nhs.uk/Conditions/Cancer-of-the-bile-duct/Pages/Diagnosis.aspx

As to PDT, should this be offered to your mum at any point then please let me know and I will be more than happy to discuss anything at all about it further. There are a lot of tips that I will be happy to share with you if your mum wants to go with that treatment.

I know that your mind starts running and your anxiety levels rise as well, that is normal. But that’s what we are here for and we so know how you feel.

My best to you and your mum,

Gavin