Search Results for 'gavin pdt'
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Search Results
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In reply to: new member
Hi Charley,
Welcome to the site. I’m sorry that you have to be here, but am happy that you have joined us all here. Please do keep coming back as you will get a ton of support and help from us all if we can. I can’t help you with your specific questions as my dad never had chemo or radiation, he had PDT. But if both of your ONC’s are saying that they are happy with stability of your tumours then is that not a good thing? I am sure that others will be along soon to offer their thoughts and share their experiences with you.
I am glad that you found us all and joined us here. I came here when my dad was diagnosed back in 2008 and it was the best thing that I could have done. Everyone here was a great help to me and I am certain that they will be of great help to you as well. Keep coming back, keep posting, ask a load of questions and we will all be here for you.
My best wishes to you,
Gavin
In reply to: Dad diagnosed with Intrahepatic CC & very depressed
Hi IRCMom,
Welcome to the site, but I am sorry that you had to find us all. When my dad was diagnosed, he was told his CC was inoperable and he had PDT as his treatment and he couldn’t have radiation either. Once my dad came home after his treatment, he was pretty downbeat about everything in general and one thing that helped him so much was when he went to his daycare centre twice a week. All the patients there had cancer and to be honest, he loved it there and it did wonders for his morale. I guess it helped him being around others who were in the same situation as he was and he got an awful lot out of it. Perhaps that is something that may work for your dad?
Marion is so right in that knowledge is power so I would recommend that you find out as much as you can about CC and everything surrounding it. You are doing the right thing in reaching out to us all here so please feel free to ask as many questions as you have and I know that we will all help you if we can. I do hope that you will keep coming back here as you will get a load of support from us all.
My best wishes to you and your dad,
Gavin
Hi there,
Welcome to the site, although I am sorry that you had to find us all. I can’t help you with my dads experiences with chemo as he never had it, he had PDT as his treatment but I just wanted to join in with the others in welcoming you here. As you can see, everyone here is really friendly and will share their experiences and information with you. So I hope that you keep coming back and you will get a load of support from us all. And please feel free to ask a load of questions if you have them.
Best wishes to you and your mum,
Gavin
In reply to: My turn for bad news – chemo didn’t work
Thanks everyone for all of your kind thoughts and help.
Lisa – I remember your post about the lung mets. How long has it been since they found it? I have 2 tumors and (if I remember) they are both about 1 cm each with also plenty of “stars” in both lungs. Have your doctors given you any kind of plan for what to do? I know that’s probably opening myself up for hearing the worst, but knowledge is the best medicine right?
Well, I met with my Univ of Chgo Oncologist, Dr. Polite. He was actually very much so toward me (polite), but had an attitude a mile wide to everyone else around him. I guess it must come with the territory of having lots of students following you around looking up to you. Still doesn’t excuse the attitude (or not calling your patients!) in my book. He saw me with 6 students with him.
Since I knew a lot, lot more this visit, it seemed like he responded to me better. He answered every question I had and then some. He opened up the CT scans to explain what I saw. Basically, since there has been new growth of new tumors, it would be likely that there might be other cells lurking to pop out at any time too. He felt that treating me systemically was the proper road to take due to the lung tumors, as well as the liver tumors.
I agreed to participate in a clinical trial at the Univ. Hosp. involving Irinotecan CPT-11 (Camptosar) chemo. This chemo is supposed to break down the cell to prevent duplicating in a very different way than the other chemos I’ve had. After 8 wks, then another set of CT’s to see if it’s done any good.
The video that Gavin just put on here, showed a little bit about the cells replicating. It helped me to understand when my Onc. was describing how this new chemo breaks down the cells. For the cell to multiply, it “untwists”, and in this untwisting process, the chemo makes the 2 strands brittle, causing it to break and not able to multiply.
That’s the plan for now, so we’ll see where that takes me. I asked about why not surgery now, as well as radiation, PDT and Proton Beam Therapy. All just treated the tumors, not the “stars” where there could be new things waiting to happen in the lungs, as well as new tumors that could occur in the liver.
This will also give me time to maybe have another consult with another Dr., or Onc. and check with my insurance again about referrals, as well as with my work’s HR dept. to check on my benefits when my sick time and vac. run out (which they may soon). I have no symptoms at all right now, so I think I could probably use this time to get more information while at least trying another therapy in the meantime.
Marion,
I have heard of Dr. Roggin. My son’s name is Kevin so I remember him too because of his name. I may have recently seen his bio on the Univ. website. Thanks for the reminder. I will check on that possible consult. I know it doesn’t hurt to get second and third (or fourth) opinions if needed.The news from the Onc. was not what I wanted to hear. I would have preferred to have surgery again, thinking they will “get it out”, but it makes sense to me that even after going through the surgery, I may still get another tumor, unless they can stop the progression with something systemic.
I also asked about Tarceva as I’ve read a few had success with that med too. My Onc. didn’t feel it was as successful with CC as with other cancers, but he held it out as something to possibly use in the future if the Irinotecan wasn’t successful. All I needed to know is that at least one member here had success with it, and I will ask to try it.
I will start the clinical trials this Thurs – July 15th. It will be a 90 min. infusion once every 3 weeks. The 1st day I will be there from 8am – 5:30 p.m. when they will take a lot of blood tests monitoring how I am processing the chemo. If I process it well and it passes through my system fast, they will up the dose. During the first treatment period (3 weeks), I will need to go to the Univ. Hosp each week for blood tests. After that, I will just need to be there for the infusion.
Other than the travelling (about 2 hours during rush hour – less if there’s not as much traffic), and that first very long day, it doesn’t seem too bad. I’m hopefully (or is it realistically?) optimistic (isn’t that what you say Lainy?) Both sound good.
Thanks again for all your support.
Linda
Hi Bob,
Good question. PDT was my dads specialists preferred treatment for him at that time and he thought it was the best option available for shrinking his tumour. So no, they didn’t do it despite the size of the tumour, they did it believing it was a viable treatment option. Dad couldn’t have surgery due to the location of the tumour, too close to the portal artery and he couldn’t get radiation either as they thought that his liver wouldn’t be able to cope with that. He could have went with chemo if he wanted, but he wanted to try the PDT first and then do the chemo at a later date, but as things turned out he couldn’t get the chemo either as the jaundice came back.
I hope some of that is useful and I hope that your dad gets back home tomorrow.
Best wishes to you and your dad,
Gavin
Gavin, I just read about the PDT. From what I’m reading it seems as though some of the limitations include not being able to treat larger tumors because the light cannot pass far enough into the mass to be effective. Was the PDT performed on your dad despite the size of the tumor or did the doctors deem it small enough for the treatment to be viable?
In reply to: Pain Control
Hi Rick,
When my dad came home from the hospital after his PDT, he was on paracetamol 2 tablets 4 times a day. Then that was changed to solpadols 2 tablets 3 times a day then upped later to 2 tablets 4 times a day. He was told to take these every day even if he didn’t have pain and that seemed to work for him. Here in Scotland, unused medicines are returned back to the dispensing chemists.
Best wishes,
Gavin
Hi Bob,
Welcome to the site, but I am sorry that you had to join us all. I know what you are going through right now as I went through the same when my dad was diagnosed back in the summer of 2008. His CC was deemed inoperable due to the location of the tumour and radiation was also ruled out from the start. My dad had PDT to try and eradicate or at least slow down the tumour growth with a view to having chemo at a later date, which as things turned out he couldn’t do.
The quailty of life issue is also one that we all had to deal with at the time and my dad wanted that so that was why he went with the PDT and not the chemo from the start. I know all of this is so confusing at first and is tough to deal with, but you are doing the right thing in coming here and looking for information. Here you will get a ton of support from us all so please keep coming back. We know what you are going through and we care.
Best wishes to you and your dad,
Gavin
In reply to: A Little Lost but Trying to Find Our Way.
Hi Christine,
When my dad was in the hospital for his PDT treatment, his specialist gave him these type of stockings to wear. But at that time he had no swelling in his legs. I’m not sure how they would or if they would affect the swelling in your mums legs, so maybe your mum could speak with her doctor before using them? The step stool for your mum to use when sitting is a good idea and my dad used a similar thing when he was sitting with his feet up.
Best wishes,
Gavin
In reply to: My sweet mother
Hi Karen and Kimmie,
Welcome to the site, although I am sorry that you both had to find us all here. And I am sorry to hear that your mum is not a candidate for further surgery. I can’t really help you with your chemo questions as my dad never had that either, but I just wanted to welcome you both here. Hopefully once the tumour board has met on Friday then you will have more information as to what treatment will be best for your mum.
As to the nausea, my dad suffered quite badly with that and went through a wide variety of anti-nausea meds and different combinations of these meds as well. Has your mum been offered any anti-nausea medication? And the fatigue was also something that my dad had a lot and it really got to him a lot.
The question of quality vs quantity is a decision that my dad had to make from diagnosis. His CC was deemed inoperable from dx and his treatment was PDT as this would have given him the quality of life that he wanted. He had the option of exploring chemo at a later date but as things turned out, he wasn’t suitable for it. This is not an easy decision to have to make, but I am sure that your mum will make the right choices for her.
My best wishes to you all,
Gavin
In reply to: elevated bilirubin, normal enzymes , no itching!
Hi Varun,
From what you say, it sounds like your mum has a variety of treatment options available to her and it is also good to hear that her doctor is willing to try them. It is also good to hear that you have consulted 4 doctors seeking their opinions and yes, I can see how it could get confusing getting these opinions from each.
From what you have said about Dr Numora, and also from what Marion has said about Dr Numora as well then I would definitely consider contacting him. If your mum was willing to travel to the UK to consult a doctor there, then I am guessing that she would travel to Japan to consult with someone there. I can’t tell you what you should do with regards to what treatment your mum should try, but if my dad had the opportunity to meet with someone with this amount of experience then that is something that I would have liked him to do. Perhaps then he would be able to best advise a suitable treatment plan for your mum to undergo in India?
As to PDT in the UK, I had heard that the trial had stopped but was not aware of the outcome or results of the trial. I am sure that you will come up with the right options for your mum and I wish you the best of luck with this. You are doing everything possible that you can for your mum here.
My best wishes to you and your mum,
Gavin
In reply to: elevated bilirubin, normal enzymes , no itching!
Hi Gavin,
Good to hear from you too! Mum’s undergoing the same thing right now, sudden jaundice and no itching unlike when she got diagnosed in 2007.. any idea why that happens? I never thought she would get jaundice even with all the ducts draining.. strange!
My doctor spoke about cyberknife, he said we could give it a try, and he also said we can try PDT.. but he said it might or might not help.. we never know. Cyberknife and PDT are both available in India (cyberknife was always available here but I didn’t know about PDT till my doc told me.. but I think it will be the first time using PDT at least for cc in Bangalore). I also consulted 4 other doctors, one said cyberknife doesn’t work for cc.. and others said we can try.. one more said chemo wasn’t an option again since she already had chemo (gemox).. one more doc recommended that we should contact one Dr.Nomura in Nagoya, Japan since that’s a reference centre where cc cases around the world are directed to ( they supposedly have the most experience dealing with cc in the world). I’m so confused with all these opinions!
Also, i tried contacting hospitals in the UK for PDT, I got information that PDT trials have stopped and is not used as a treatment anymore because of high mortality rates.. is this true?
Thanks so much for responding Gavin! My best wishes for you too!
Varun
In reply to: elevated bilirubin, normal enzymes , no itching!
Hi Varun,
Good to hear from you again, but I am sorry to hear that your mum was in the hospital again. When my dad’s jaundice came back again late last year, he had the yellowing of the skin and eyes, but did not have the itching at all, unlike when he was first diagnosed in 2008.
You say that your mums doctor says that you should just accept all of this, but did the doctor speak with you about the treatments you mention? And if so, what did the doctor say about them? Would it be possible for your mum to be seen by another doctor for another opinion? Is cyberknife or PDT available as a treatment in India?
I am sorry that I can’t help you any more. And I know what you mean when you speak of wanting to take some of the pain away from your mum, I thought that many times with my dad. I hope all goes well for your mum when she goes back to the hospital next week.
My best wishes to you and your mum,
Gavin
In reply to: From Vegas To Cancer
Hi St Germain,
Welcome to the site but I am sorry that you and Nancy had to find us but glad that you have joined us here. And I am sorry to hear of your wifes diagnosis. Like you, I had never heard of cholangiocarcinoma until my dad was diagnosed back in 2008. His cc was also deemed inoperable from diagnosis and he also had a metal stent inserted. Like Nancy, the first symptom we saw was his jaundice, and yes CC also took over his and our lives. He never had chemo or radiation as treatment, he had PDT.
I hope that you will keep coming back here and asking lots of questions, as you will find a ton of suppport from all of us here and we have been in the position that you are in now. We know what you are going through and how hard all of this can be to deal with.
Like you, we all wish that we had never heard of CC, but we have so that is why we are here and help one another.
My best wishes to you and Nancy,
Gavin
In reply to: An appointment at last….
Thank you everyone for your messages.
Gavin, the surgeon we saw at Basingstoke was very dismissive of PDT and said that the clinical trial that had been up and running for it was actually stopped part way through because of the really bad results…. does anyone know about this ? I thought that some people had done well on it.
Mum is really depressed at the moment about it all and I feel that she just doesn’t have enough information about it all. At her original diagnosis the doctor told her not to look cc up on the internet and so all she has to go on is what the doctors tell her at appointments.
I am not sure whether to suggest this site to her or not…… There are obviously some amazing stories on here and it would be great for her to be able to talk to other people dealing with cc but I don’t know whether all the sad stories would be too much for her at the moment.
I am looking into other options for her and telling her about them but she just seems bewildered. I don’t know what to do for the best.
Jemima
