Search Results for 'gavin pdt'

Hi There,

Like Percy said, my dad had PDT and a metal stent inserted as his treatment for his CC. Here is a post that I wrote about it at the time.

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

The link Percy gave you is a good one and here’s another although it doesn;t refer to PDT and CC.

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Othertreatments/Photodynamictherapy.aspx

http://www.cancer.org/Treatment/TreatmentsandSideEffects/TreatmentTypes/photodynamic-therapy

http://www.patient.co.uk/doctor/Photodynamic-Therapy.htm

I think as well that Dr Khalleh at the University of Virginia has experience of using PDT for CC and is running trials on that as well, alkthough if I am wrong about that then hopefully someone will correct me.

And of course, if you have any specific questions on my dads experiences of PDT then please just ask and I will do what I can to help in answering them.

Best wishes,

Gavin

Hi,
PDT that I understand is mostly suitable for extrahepatic CC .Gavin ‘s dad had it done in UK ,He will give you a better idea.
Keep looking under the discussion forum here under radiation treatment and you will find his opinion before he will join you forPDT discussion.
Here is a link for info.

.Photodynamic Therapy for Cancer – National Cancer Institute
http://www.cancer.gov/cancertopics/factsheet/Therapy/photodynamic
A fact sheet that explains photodynamic therapy, how it is administered, and indications and side effects of treatment.
God bless.

Hi,
Extrahepatic CC METASTASED to where if I may ask.BTW, I have intrahepatic CC for 34 months ,it is quite a long journey.
I know Gavin’dad and Lainy’s husband and many others on the board had extrahepatic stage 3-4. Mainly stents changing and bile flow and ascites are the main problems. IBRT ,PDT or cyberknife are radiation treatment options besides systemic chemotherapy.
If the tumor inside or around the bile duct is growing it will show as a stricture in the bile duct and it will show on the scans or MRCP. Changing the stents every other month to improve the bile flow is a common practice to keep the bile from backing up in the digestive system.
Palliative chemotherapy or adjuvant chemo treatment is no guaranteed for cure or prolonging the life of most CCA patients but as you may notice from this web site,there are CCA patients who live beyond 5 or even the 10 or 15 years mark.
Keep in touch,
God bless.

Gavin, thank you for posting this study.

Here’s the part of the study that I found very interesting:

My wife is starting the next round of chemo on Tuesday. She doesn’t have a measurable tumor that can be used to monitor chemo effectiveness. Our oncologist already told us that CA-19-9 isn’t a reliable test. Too many false positives/negatives. So, basically, we will be “shooting in the dark”. Endure six cycles of very toxic regimen and hope for the best.

I want to ask the oncologist to start testing CA-19-9 and IL-6. It’s possible that we won’t get any useful feedback from the tests. But, at the very least, we will establish a baseline that can be used for future surveillance.

Percy or anyone else:

How common is IL-6 blood test?
Can a regular hospital lab test it?
Is it expensive to test?

Thanks!

Hi Janine,

Welcome to the site. So sorry that you had to find us all and I am sorry also to hear about your diagnosis. But I am glad that you have joined us all as you will get a ton of support and help from all of us here. When my dad was diagnosed with his CC it was also found too late for him to have surgery and he had PDT done and also had a metal stent inserted to help with his jaundice.

I will have a look at your blog as well, and as Marion says we do have a blog section to the website here as well. I know you said that having your blog was a good place for you to vent, but please know that you can come here and vent also. Shout, scream and vent away if need be and the members here will totally understand. And also, please feel free to ask any questions and everyone will help if they can.

I will keep my fingers crossed for your doctor dealing with tghe insurance company and please let us know how this goes. I look forward to hearing from you more and please know that we are all here for you.

Best wishes,

Gavin

Hi MK,

My dad had a stent inserted after his diagnosis to deal with his jaundice. As the others have said, this will allow the bile to start flowing again and in my dads case, he felt tons better once the stent was in and working as it should. He had a metal stent inserted instead of a plastic one, do you know what type your mum is getting?

I find it strange and wrong that someone would say to you that having a stent placed means practically giving up. Was this your mums doctor that said that? When my dads GI specialist told us about stents and how they work etc, he most certainly did not say anything like that! as the others have said, there are many benefits of having the stent and I know my dad would agree with them on that!

My dad did also have PDT with his stent, and if you want any more info on my dads experiences with that please just ask and I will help if you can. Maybe it is something that you could discuss with your mums doctor. I sure hope that your mum can get some help here and I know it must be so tough you not being there with her right now.

My best wishes to you and your mum,

Gavin

Hi,
If patient has jaundice,stent or stents are needed to help the bile flow from the liver and out of the body. It is a relatively simple procedure and therefore you should not be worry too much.
When the bile start to flow normally,after a couple weeks you will see the jaundice subside and then at that time try to get the RFA done as soon as possible before the bilirubin go back up again.If the stents are plastic ,they may be needed to replace every 2-3 month for keeping the bile flows normally;that means your best TIME FRAME for RFA is the earlier part of the exchange of the stents when the bilirubin level is low.

Patients can have stents and chemotherapy at the same time;some restrictions may apply to radiotherapy but not all the radiological treatment.
Gavin from UK has more experience in stents and PDT and I am sure he will talk to you soon.
It is better for patient and their caregiver for the patient to have stents rather than the external drainage of the bile. It is messy,and high in infection recurrences.
God bless.

Hi Karen,

Yes Patty is right, my dad have PDT back in 2008 as his treatment for his inoperable CC after his diagnosis. He had that along with having a metal stent inserted for the jaundice. If I can help in any way with talking about his experiences with PDT then please just ask and I will do what I can. As Patty also says, I did write a bit about my dads experiences with PDT and here is a link to one of my posts about his initial treatment.

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

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2089

Thats good that you were able to talk with Dr Khaleh as I understand that he has done a lot of work and research into PDT for CC. Please let us know how your mum gets and if I can help in any way just ask. One thing I would say is that if your mum goes for PDT then make sure the doctor explains fully the full side effects of the PDT with regards to your mums skin and eye sensitivity to direct light, as this can last for up to 2 months after treatment.

My best wishes to you and your mum,

Gavin

Karen,

I am sorry, I just saw your follow up question to my post about PDT. I also e-mailed you just in case you don’t see this reply.

My mother did not have PDT, I was not aware of it before she had the surgery, I am fuzzy on the details because it has been a few years but I think after her surgery I made a call to Cancer Treatment Center in Zion, IL, and they did not do PDT for cc at that time at that facility, though that may have changed.

Gavin’s father had PDT, if you search the board you will see he has posted quite a bit on his father’s experience.

Patty

Marion,

My dad was on Ursodeoxycholic acid. He was put on it because he had PDT and he stayed on it throughout taking it 3 times a day. And like you, I haven’t seen it mentioned here very much at all. The photosensitizer he had was also Photofrin.

http://pubs.rsc.org/en/content/articlelanding/2007/pp/b705919a/unauth

Gavin

Hi Desmet,

Welcome to the site. Sorry that you had to find us all but I am glad that you have joined us all as you have come to the right place for support and help, and you will get a ton of both of these from all of us. As Percy and Lainy have said to you, I am in the UK, in Dundee in Scotland. My dad was diagnosed and treated here in Dundee at Ninewells hospital where he had PDT. Where abouts in the UK are you and where did you have your whipples?

As Lainy said to you as well, we do have quite a few members here in the UK and I know that some of them will be along shortly as well to welcome you here as well. That is great to hear that you were able to have the whipples and it would help other UK members as well if you could let us know where this was done and who did it.

How are you feeling right now and did your docs want to do any further treatment for you? Percy mentioned the BILCAP trial involving Capcetabine and surgery vs surgery alone for CC. Did your doctors mention this to you? Here is a link to the trial that may be of interest to you –

http://cancerhelp.cancerresearchuk.org/trials/a-trial-looking-at-capecitabine-after-surgery-for-cancer-of-the-bile-duct-or-gallbladder

We are glad that you have joined us all and you are most welcome here. Post away as much as you want and if you have any questions then please just ask and we will do what we can to help in answering them. And please keep us updated on how you are doing.

My best wishes to you,

Gavin

Hi Percy,

This is a great idea for a thread. Many thanks to you for taking the time to start this off. I will talk about my dad’s experiences. But for those who read this post, please be aware that some of this is *SENSITIVE* material. If you do not want to hear about this then please do not read this post anymore.

Case 54: My dad, diagnosed in Autumn 2008 aged 64. First symptom was the jaundice, yellowing of the skin and eyes, then the itching. No symptoms at all prior to these that lead him to suspect anyting at all was wrong. General health before diagnosis very good, slightly overweight but very fit. Non smoker all his life and alcohol consumption also minimal all of his life as well. GP referred him to Ninewells in Dundee, admitted due to the jaundice and had tests, CT, MRI and ultrasound and over 3 weeks later was diagnosed with inoperable CC. Deemed inoperable due to location of tumour being too close to the portal vein and radiation ruled out from diagnosis as the GI specilaist thought his liver would not cope well with it.

Treatment options offered were chemo or PDT. Dad wanted quality of life so chose PDT over the chemo but had the option of doing chemo at a later date if possible. He liked the fact that the side effects of PDT would be less than the chemo. Also had a metal stent inserted to help relieve the jaundice and this worked. Then had the PDT. Photofrin was used as the light sensitising agent and this was given 2 days before the PDT was done. After PDT, spent 6 weeks in a single hospital room with no lights on in room. My dad was alos prescribed Prozac at this point. When discharged from hopsital, dad had to wear articicially darkened glasses, wide brimmed hat and gloves when outside for the first 6 weeks. Then tried to test his skin sensitivity to natural light by going outside with a paper bag on his hand with a hole cut in the bag. After 10 minutes outside his exposed skin started to go red so Photofrin still in his body and he had to keep wearing gloves outside for another 2 weeks. Then repeated test and skin not going red so could take gloves off, 2 weeks after that could take the hat off then another 2 weeks after that could go outside with no darkened glasses.

Follow up CT scan after PDT showed that treatment had not worked as well as hoped, but had stopped the tumour growing. Dad had slight pains and this was managed with paracetamol 3 times a day then this was changed to Solpadols 3 times each day. Lactulose twice a day every day also used to help with bowel movements, Movicol also tried but was not working well so stuck with Lactulose. Spring 2009 the jaundice came back then suddenly disappeared as quickly as it came. Ct scan showed no more progression at this time and doctors very happy with how dad was doing here although they couldn’t explain why the jaundice came back then disappeared again.

Late summer/early autumn pain starts to increase slightly so Solpadols increased to 4 times per day and this helps. Nausea also starts in a small way so meds given for this. As the weeks go on the nausea increases so the meds are changed, as are the combinations of the meds. Some work better than others and Buccastem which will dissolve under the tongue is prescribed as this does not need to be swallowed and kept down for it to work. Fatigue is also a big issue and dad is taking many naps each day, but this has been going on for many months now.

Autumn 2009 dad has another CT scan and this time the results show that the tumour is growing quite a lot. Still at this point he has no jaundice and GI Specialist refers dad to an oncologist to see about trying chemo. A few days before meeting with the onc the jaundice comes back in dads eyes. Oncologist sees this, discusses everything with us and rules out chemo now. Reason being that the chemo would not be able to be flushed out of dads body due to the blockage in the bile duct.

Nausea now starts to get much worse and dads appetite declines a lot. Fluid is building up in dads ankles, legs and abdomen. Meds tried for this which don’t work and they talk of attempting to drain dads abdomen. Dad is going to a cancer day car centre twice a week and has been doing so for months now, and he loves going there. The centre is attatched to a hospice and because dads nausea is getting so bad they take him into the hospice to try and deal with the nausea. This is in November 2009. They try to change meds again and change the way they give the meds. Now dad is on a syringe driver instead of taking meds orally and they give him Haloperidol as well. This helps a lot with his agitation. Into December, most of dads meds are removed and now what they are giving him meds only to deal with his pain, nausea and to help him sleep if he wants. They try to drain the fluid from his abdomen but they can’t do that. All they can do now is to keep dad as comfortable and pain free as they can, and they do an outstanding job in keeping dad very comfortable. They also keep his pain at bay with pain injections when needed in addition to what he has through the syringe driver. On the morning of the 9th of December we are called up to the hospice immediately and dad has slipped into a sleep. I stay with him all day and he is very comfortable and sleeps throughout this time. My dad passes away early in the morning on the 10th December 2009.

Thank you again Percy for starting this thread, I hope that it will be useful to many. I don’t know if what i have posted is what you are looking for on this thread. I guess that I have went overboard with posting details about my dads fight, but it is hard to sum things up in just a few lines. I’ve probably missed some things out, but I hope this is okay.

My best wishes to you and to everyone here,

Gavin

Hi Wittrokj,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But I am glad that you have joined us all here as you have come to the right place for support and help, and you will get a load of that here from all of us.

You are right that this is a difficult diagnosis to swallow and I can still remember how I felt when I heard my dads diagnosis of inoperable CC, like being hit over the head with a bat. But coming here helped me as I was around people that knew how I felt and what I was going through, and we sure do know how you feel right now. Yes the up’s and down’ or the rollercoaster of emotions is something that all of us here can relate to. We have the good days and the bad days but we all keep on fighting, and from what you have said, both your mum and your family want to fight this all the way and that is great to hear.

Here is the link that Lainy mentions regarding clinical trials –

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

There is also a video of a webinar in that link about clinical trials that may be of interest to you. Have your mums doctors talked of any other treatment apart from chemo, radiation type treatments perhaps? There is a lot of information here in this site provided by members who they or there loved ones have underwent. My dad had a metal stent inserted to help relieve his jaundice and he also had PDT as his treatment.

That is great that you are seeking further information as the more information you have the better informed you will be when it comes to making decision regartding treatment etc. Please do not be afraid to ask questions here. We can’t promise to have all the answers but we will do what we can to help in answering them. And keep coming back here and let us know how your mum gets on. We know what you are going through and we care.

My best wishes to you and your mum,

Gavin

Hi Marion,

This is a great artice and thank you very much for posting it. If I could just add that anyone who has had PDT within the last few months needs to be extra ultra careful of the sun after undergoing that treatment. For those who don’t know, PDT makes the skin and eyes extremely sensitive to lights and the sun anyway and that will be exacerbated greatly with the summer sun. Sunscreen and lotions will not be effective here for blocking the damage that sun and light will do after having PDT. After my dad had his treatment, he had to cover up completely on leaving the hospital. Wide brimmed hat, gloves, full covering on all skin and he had to get his glasses darkened by his optician as sunglasses were not strong enough. This went on for a few months and I can’t stress enough the damage the effects of the sun and light can do for someone who has recently had PDT. Apologies if I sound like I am going over the top here, but I saw how quickly my dads hand would burn standing outside for 10 minutes in virtually no sun when he was doing the paper bag test 8 weeks after having his PDT.

Thanks again Marion!

Gavin

Hi Wendy,

The stent will allow the bile to start flowing again so should help in relieving the jaundice and the yellowing of the skin and eyes etc. A plastic stent can be removed if it starts to clog up with bile and sludge again, whereas a metal stent is seen as permanent. Plastic stents clog up easier than metal ones do and tend to do this after 3 months or so and metal ones seem to last longer, around 12 months onwards before they start to clog. A sign that the stent could be clogging up could be a fever or temperature or pain in the area of the stent and should that happen then I would recommend that you get your dad seen by his GP as soon as possible.

PDT (Photodynaimic Therapy) is basically a procedure that involves using a laser and a light-sensitive drug to attempt to destroy cancerous cells and the tumour. My dad had that procedure done but it is not commonly used, and I wrote quite a bit about his experiences with it here on the site and you can search for my posts on this if you like. Here is a link that goes into more detail on PDT.

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Othertreatments/Photodynamictherapy.aspx

Hope some of that helps. Any more questions then just ask away.

My best wishes to you and your dad,

Gavin