Search Results for 'gavin pdt'

Hi Michelle,

I’m pretty certain as well that here in the UK someone who is going through treatments of whatever type, chemo, radiation etc will have bloods taken quite a lot throughout that treatment. My dad had blood taken quite a bit before his PDT treatment but he did not do chemo so can’t share anything specific as to that and bloods etc. But I am sure that if your sister was to start a treatmnet, SIRT etc then they would be doing bloods before and after.

And just let me say that you are so doing the right thing here in seeking as many answers and info as possible for your sister and I know how much that she will appreciate all of that. Never be afraid to ask questions Michelle!

My best to you and your sister,

Gavin

Thanks for that Elizabeth. And if Peter does get to have the PDT remember all about the side effects of skin and eyes to light sensitivity, I really can not stress enough the importance of that and covering up against the sun for a few months! But I am sure all of that will be explained to you both in detail before the treatment starts. Keep us updated on everything Elizabeth.

My best to you both,

Gavin

Hi Elizabeth,

Glad to hear that my posts on PDT helped fill in the blanks and hope that the webinar did as well! Is this the study that you applied for at Weill?

https://clinicaltrials.gov/ct2/show/NCT01524146

Brought that up here just in case it is useful for anyone else reading this post. Please let us know how everything goes and hope that Peter is able to get on the trial if that is what he wants to do.

My best to you and Peter,

Gavin

Hi Elizabeth,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about Peter, but glad that you have joined us all as you are in the best place for support and will get loads of each from everyone here. Thanks as well for sharing what is going on with you both.

Have you looked at the side effects part of the site as you will find lots of info there about dealing with various side effects of this cancer. My dad also struggled with the fatigue for a long time and he napped a lot during the day.

My dad also did PDT as his treatment here in Scotland back in 2008 and I wrote a bit about that at the time here on the site. Should you wish to search for my posts to read about that then you can. Just search under list – Gavin – all posts – and the posts about my dads treatment are on pages 320, 321 and 322, 323 and 324 I think. I’d put a link to them here but that doesn’t seem to be working these days and we all have to search ourselves now!

There was also a webinar done here on the site a few weeks ago about PDT and the OPUS trial if you are interested and that can be viewed here –

http://cholangiocarcinoma.org/new-webinar-photodynamic-therapy-a-ray-of-light-in-cholangiocarcinoma-the-opus-trial/

Please keep coming back here Elizabeth, we are here for you.

My best to you and Peter,

Gavin

Hi Emma,

I wish I could help you with this decision that your mum has to make but my dad never had chemo so I can’t really help too much on this issue. He was offered chemo or PDT after his diagnosis, his cc was deemed inoperable so he chose to have quality of life over quantity for the time that he had left and felt that the PDT would be abetter choice for him rather than chemo.

This choice is one that is tough for someone to make and my own thoughts are that the person making the choice should do whatever they feel is right for them. I said that to my dad at the time and told him that I would support him in whatever choice he made, and I did support his decision totally.

Chemo can be stopped at any time should your mum start it then chose to stop, it is totally her decision no matter what she has signed up to. Maybe you could try and speak with the onc on your own if your mum agrees to that so that you can ask all of the questions that you want without your mum being there? Just thinking out loud here.

I know this is such a tough time for you right now Emma, I was where you are now with my dad too so I know what you are going through. Keep coming back here, we are here for you.

Hugs,

Gavin

Hi Judith,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what Mary is going through right now. But I am glad that you have joined us all here as you are so in the best place for support and help and you will get loads of that from all of us here. If we can help in any way we will, just ask and we will do what we can.

As Lainy says, I too am from the UK, Dundee up here in Scotland and we have many members here on the site who are from the UK. My dad was diagnosed back in 2008 here in Dundee and was also treated here as well with PDT.

You are so right what you say about the Christie in Manchester. It is well known throughout the UK, Europe and the USA as well. Can I ask who Mary’s oncologist is at the Christie, Is it Prof Juan Valle? If so I would say that Mary is in very good hands indeed with prof Valle. Prof Valle is the Vice Chair of the Medical Board for the Cholangiocarcinoma Foundation and has much experience in dealing with patients with CC.

http://cholangiocarcinoma.org/juan-valle/

I do have a few UK specific links that will be of interest to you and Mary. Have you heard of AMMF in the UK? It is the UK’s only specific webiste and charity for CC and it can be found here –

http://www.ammf.org.uk/

You will find a lot of UK specific info there regarding other major treatment centers and treatment options.

http://www.ammf.org.uk/cholangiocarcinoma/treatment-options-2/

http://www.ammf.org.uk/cholangiocarcinoma/guidelines-for-diagnosis-and-treatment-uk/

http://www.ammf.org.uk/cholangiocarcinoma/specialist-treatment-centres/

Helen who runs AMMF is a gem and I am in touch with her frequently about lots of things CC related. Should you wish me to contact her on your behalf about any other facilites or options in the UK then I would be happy to do so for you.

I hear what you say about treatment under the NHS and all that but there is quite a lot being done now for CC in the UK. I assume that surgery was ruled out seeing as Mary was only offered chemo, did Mary seek a second opinion on surgery if that was the case?

Should Mary want to seek further options in the USA then I will leave that to some of the USA members to discuss with you as they know far more than me about things on the other side of the pond.

I do hope that you keep coming back here Judith, you are not alone in this now. We are here for you and we care.

My best wishes to you and Mary,

Gavin

Hi Paula,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad, but glad that you have joined us all here as you are in the best place for support and help and I know that you will get loads of each from everyone here. Thanks for sharing what your dad has been through and he has been through much hasn’t he.

My dad also had PDT with a metal stent placed after diagnosis and that helped him enourmously with the jaundice. It sounds like your dad is doing much better with the metal stents than the plastic ones. Yes the metal ones are permanent but they can be cleaned out if clogging becomes and issue. Great that he has gained weight as well and getting his strength back too!

Lainy is right about seeking further opinions and I second that view. Were the med team that your dad had experienced in dealing with patients with CC? Having a med team around your dad that is experienced with CC is crucial in my opinion throughout everything. Here is a list of major treatment centers in the USA –

http://cholangiocarcinoma.org/for-patients/major-cancer-centers/

I’m not sure how close you are to any of these hospitals or if your dad is up to travelling but if it was me then i would be looking to get my dad seen by someone in one of the paces in the link above. Your dad does sound like a fighter and from what you say I would guess that he is not ready for hospice care at this point, good on him!

I know that you will get recommendations from people on here about facilities. We also have this thread here which will be of use to you and is created by our members –

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126

Link to all Cleveland Clinic posts here on the site –

http://www.cholangiocarcinoma.org/punbb/search.php?search_id=747446894

Hope some of these are of use to you Paula and please keep us updated on how everything goes. We are here for you and we care.

My best wishes to you and your dad,

Gavin

Hi Mary,

Welcome to the site. So sorry that you had to find us all here and sorry to hear everything that you have been through so far, you sure have been through so much haven’t you. But I am glad that you have joined in with us all here as you are not alone in this now, we are all here for you and we care.

Thanks so much for sharing everything with us and I hope that it made you feel even just a wee bit better getting that out. Here you are around people who so know what you are going through and how you feel. So you share as much as you want to and if it helps then please feel free to shout and screan as well if it helps!

My dad never had surgery so I can’t share any personal experiences of that with you, he had PDT. But I know others will be along soon to share their surgical experiences with you. And it is great to hear that you were able to have surgery as many are not.

Keep coming back Mary as I feel that coming here will be of great help to you. And remember that you are not alone in this now, you now have an instant worldwide family and we so care!

My best wishes to you,

Gavin

Hi Deb,

Welcome to the site! Sorry that you had to find us all here but glad that you have joined as you are so in the best place for support and help and I know that you will get loads of each from the great members here. And real glad to hear as well that your surgeon recommended this site to you!

I can’t personally help with personal experiences about surgery or chemo as my dad never had either, he had PDT but I know that there will be many along soon that will be able to help with the specific questions that you ask. What type of chemo did your onc at Lahey recommend you take? The more info that you can give us the better that we will be able to help you.

Thanks for sharing what has been going on with you. As I said, sorry that you had to find us here but please know that you are around people who know what you are going through and are here for you. You are not alone in this now, we are here for you and we care. Please keep coming back and let us know how everything goes.

My best wishes to you,

Gavin

Hi NolaPat,

Welcome to the site. Sorry that you had to find us here and I am sorry to hear about your husband and what he is experiencing right now. Glad that you have joined us all here as you’re in the right place for support and help and know that you will get loads from everyone here.

I missed your post when you first posted, my apologies for that. My dad too had PDT for his CC with a metal stent placed back in 2008 after his diagnosis and I wrote a bit about that here on the site. Here are a few links to my postings if you want to read them.

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

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1959

I so hope that Neil’s med team can get to grips with the pain, no one should have to suffer through pain and pain can be controlled. How long ago did Neil have the PDT? My dad had the after effects of it for some time re sensitivity to light and all of that, I’m sure that you both were warned about that.

Hope that the next scans show some good news for you both and please let us know how they go. We are all here for you and we care.

My best wishes to you and Neil,

Gavin

Hi Sammie,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad. But I am very glad that you have joined in with us all as you are in the right place for support and help and you will get loads of each from everyone here. Having been where you are with your dad right now 5 years ago myself with my dad I so know how you are feeling and what you are going through at the moment. I know it was a big step for you to register and join us all and I am glad that you did.

I too am from the UK, in Dundee up here in Scotland and my dad was diagnosed and treated up here with PDT. Can I ask where your dad was diagnosed and where is being given his chemo and by whom? Sorry for the questions but the more info we have the better we can help.

Has your dad sought a second opinion for his CC and how would he feel about that? If not, I highly recommend he seek and opinion from Juan Valle at the Christie in Manchester. He is so very very experienced in treating patients with CC and your dad would be in very good hands with him. He has helped a few of our members and they only have such good things to say about him.

Here is a few links for you about Prof Valle and he can be found through this link –

http://www.christie.nhs.uk/about-the-christie/whos-who/our-consultants/juan-valle.aspx

Juan also is vice chair of our medical advisory board – http://cholangiocarcinoma.org/juan-valle/

Another great link that is totally UK specific is AMMF and you will also find lots of info re hospitals and treatment centres in the UK – http://www.ammf.org.uk/cholangiocarcinoma/specialist-treatment-centres/

I know that you are anxious about getting the latest ct results for your dad, that is so very common and we all go through that. Please do not give up hope though! I know it can be tough sometimes but please stay strong as your dad and your kids as well will need you to be strong.

You have reached out for help and we are here for you, you are not alone in this anymore. If you have questions just ask and we will do what we can to help. Helen who runs AMMF is a gem and should you wish me to I will contact her on your behalf if you like. I know that under the NHS system your dad is entitled to a second opinion from someone of his choice and I am sure that your dads current onc or gp would be able to refer your dad to Prof Valle and I am sure that he would be happy also to see your dad.

Please keep coming back Sammie and keep us updated on everything. We care.

My best to you and your dad,

Gavin

Hi Nicole,

Yep, thats the word I was looking for, balaclava! Not just for criminals and bank robbers they are I guess! For sure though in your part of the world in winter people do have to take extra care from the temps when going through treatment. I guess the Parisian look with scarf and beret may not just be enough to deal with the cold winters! When my dad got his PDT treatment he had to protect his eyes and skin from direct light for about 8 weeks. He had to wear the darkest glasses possible, gloves and a wide brimmed hat when he left the hospital and went outside as the light would burn him. He thought he looked like Michael Jackson though!!

My best to you both,

Gavin

Hi Supermum,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your husband, but glad that you have joined us here as you’re in the right place for support and help and I know that you will get loads of both from everyone here.. Not really much that I can add to what the others have said to you already, but going full guns blazing, that’s fighting talk and I love hearing that!

I too am from the UK, Dundee in Scotland and my dad was diagnosed and treated up here. He had PDT as his treatment. Here is a link to AMMF that is a UK site and charity and you will find a lot of UK specific related info there.

http://www.ammf.org.uk/

Where was your husband’s consultant in London based if you don’t mind me asking? Like the others have said, the search forum function will throw up tons of relevant info from the members here and if we can help in any way please just ask. If you wanted any specific UK related info from Helen then please just let me know and I’ll get in touch with her on your behalf if you want.

And please let us know how everything goes. You are not alone in this, we are here for you and we care.

My best wishes to you and your husband,

Gavin