http://pathology2.jhu.edu/gbbd/whatsnew.cfm

It is with profound sadness that I have to say these words... that my Daddy has past away.

Late Sunday evening the hospital called to tell me that my Dad's breathing was worse, very laboured and he was unresponsive. My husband and I arrived around 10:30pm and saw for our selves how may Dad's condition had worsened since we left at 6pm. The nurses prepared a private room for us, so that we could come and go as we please and as the hours went by the nurse give Dad morphine and ativan. Around 2:30am we began to notice dad's breathing became more shallow, with long pauses, then the pauses became longer and longer, until he just stopped breathing... and he was gone... it was so peaceful and yet so hard to see my Dad leave us...

I want to tell you all, how much I appreciate the support and knowledge past to me by everyone on this site. I became known as "Dr. Horvath" thanks to you, able to understand better what the Dr's and nurses where telling me about CC and Dad's symptoms.

My heartfelt thanks to everyone.

Dianne

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Below is the death notice which will appear in the local paper and the Toronto Star:

HORVATH, Arthur Arpad
Passed away peacefully June 13, 2010, in his 82nd year, after a 5 month battle with Bile Duct Cancer. Predeceased by his beloved wife Pauline, Art slipped away with his daughter Dianne and son-in-law James Hollingsworth by his side.
Many thanks to the wonderful, caring, compassionate staff at Oshawa General Hospital ER, 6 Main, the Cancer Centre and Princess Margaret Hospital

Thank you so much Lainy and Marion, always a great comfort to see your words of support.

Lainy, all the doctors and nurses have told us that Gemicitabine is a well tolerated chemo drug, with only minimal side effects. It's the Cisplatine that is known to cause the worst of the side effects. The Oncologist at Princes Margaret who is leading things for my Dad said, that he's read the German study on Gem/Cis and is not convinced that you have to have both in order to get results. He's seen results from just he Gemicitabine. 

As of yesterday, the ultra sound has come back, showing no blockage. YAY! But his levels had still gone up, so the hospitalist spoke to the kidney specialist, who said to give Dad a large does of Lasix a potent diuretic (water pill) to "jump start" the kidney's. The hospitalist seems to think that the kidney specialist was pretty sure this would do the trick, but was cautious to say that it would work for sure... understandable.

So in the mean time, I've finally spoken to the radiologist at Princess Margaret in Toronto. He told me that since Dad is in the hospital and that they are keeping him there, he can't do any treatments on him until he is ok/out of the hospital. Ok, I understand. However he said as soon as we know he's getting out, call and find out where he is and let them know that I'm bringing him, in order for him to do measurements. He's ready to see him on the spot!!!!

The G20 Summit is causing major problems here in Toronto, ON. Parking is at a premium on regular days, but will be astronomical now. Princess Margaret Hospital is right down in the middle of it all, and only a few blocks away from the Ontario Parliament, which I'm sure will be congested with protesters. 

So lets hope the Lasix does what we hope it will do. I don't want to go in today, unless they have some thing good to tell us... even if it's just that he's urinating like crazy!

Take care, and thank you for getting me over this bump.

Tomorrow is another day!

I just wanted to curl up in a ball in a corner some where when that Dr. blasted me... and then I get all mad and picked my self up and think that this is not it, it can't be, Dad's talking, walking, thinking! These last few weeks have not been quality time at all.

I have to push on for him... the radiologist at Princess Margaret left me a message to call him back in the morning. I feel like if they could just get some radiation on this damn thing, it could knock it back just enough to get some chemo into him.

I know I have to be realistic, but they haven't given him a chance or the tools to fight... it's taken 4

I'm so sorry Lainy... I can't believe there is nothing more they can do for Teddy... my heart goes out to you... many hugs go out to you.

Some of you are already familiar with my Dad, he's been stented a number of times with two plastic and one metal stent and he wants to do chemo.

We've been trying the get going on the chemo sessions but have had nothing but problems with the stent blocking and now more recently, the tumour has grown (doubled in size) and has grown through the metal stent (even though we've been told it was impenetrable).

Dad's been in hospital for over two weeks now, they've put an external drain in through the ribs, cut into the metal stent and feed it through, into the bile duct. It's a special tube that works sort of like a garden soaker hose, allowing bile to seep into the body. They just replaced it this morning with a bigger diameter hose. He's been on antibiotic ever since and has not had a fever for more than a week. Although his blood has dropped by 10 over night to 78, and is now get a blood transfusion.

Now the Dr. tells us that his kidney's levels are off and suspect something else is going on. His feet are swollen, and has not been able to urinate for the last 24hrs, although he did this morning. They put a catheter back in, but not much is coming out even after putting more fluids into him. They also sent him for an ultra sound before I left and we are now waiting to hear the results.

Dad's not eating and drinking much, in fact everything tastes horrible to him. He's only eaten today because I told him he has to eat and spoon feed it to him. Part of the problem is that he doesn't want the nurses to wipe his bum and doesn't want to bother them. UGH!!!  Also told him he has to drink lots of water and he has since I've been getting after him.

Trying to get the oncology team here at Oshawa General to get going on arranging IG-IMRT radiation treatment at Princess Margaret Hospital in Toronto, but nothing seems to be happening. The doctors here sent me to Toronto to see the radiologist last Thursday(right in the middle of all the Summit stuff going on), with all of Dad's latests imaging, and said he's thinks it's need now too, but then he says he needs the Oncology team in Oshawa to tell him what they want to do, such as if they want to wait to see if he's to get another chemo session in or not.

Ugh! Please somebody do something!!!

To add insult to injury, the hospitalist (he's like a GP) came over to me while I was standing in the hallway a few hours ago and chewed me out! He said that we shouldn't be discussing what's going on and asking questions in front of my Dad,  that he's got enough to deal with. That if it was his Dad he wouldn't blah blah.... my Dad still has his faculties about him and wants to know what's going on, I've even asked him.  And yet the day before he tells me that he can't talk to me everyday, he doesn't have time to talk to every family member.

Anyone have any insight and or words of encouragement, please send them this way...

Thanks Dianne

Main page web site: http://www.napcc.ca/

http://www.cancercare.on.ca/pcs/treatment/rcchospitals/

9

(22 replies, posted in General Discussion)

Whipple that CC outta there!

I'm anxious to hear a report too.

All the best,

Dianne

Hi xepalomero,

I'm so glad that you found CCF. Everyone here and the information that is available will help you immensely.

Plastic stents can dislodge them selves due to general movement, bending, tumour growth etc. and usually are a temporary measure until surgery is decided on. However, once surgery has been ruled out, a more permanent metal stent can be inserted.

Metal stents are said to last 8-12 months (many last much, much longer), are much bigger in diameter and longer than plastic, and they are impenetrable. However, they can still block up due to tumour growth at the ends and build up of bile slug can also happen. Should it block up, generally another metal stent can be inserted inside the other one.

My 81yr. Dad was diagnose with CC at the end of January 2010, he has had two plastic stents put in since then, is not a candidate for surgery due to his age and other medical factors, and has had the metal stent put in 5 weeks ago. He just started anti-blood clotting shots Tinzaparin and will have his first round of chemo this week. In case you didn't know Cancer's have been know to cause blood clots, my Dad had a PE in August of last year, making it one of the first symptoms.

My Dad's appetite is not so great either, even the things he loved are a big turn off to him now... the liver is in distress and I think if the tumour responds to chemo or radiation their appetites will get better.

There are lots of ups and downs with this cancer, however CCF has made it all much more bearable.

All the best to you and you grandmother.

All I want to know is, what treatment options does Mayo have that my Dad could benefit from.

They do not say, "Based on what Dr so and so has seen from your fathers imaging and medical notes, he feels that your father would benefit or be an good candidate for a surgical procedure, a new chemo or radiation treatment... they refuse to tell you anything until you pay!

Dianne

12

(25 replies, posted in General Discussion)

Well, we're home! Only 24hrs later.

Dad had an over night stay in the hospital. The on-call GI said he wanted to keep him in over night to keep an eye on him, and do a ERCP in the morning, just to see if there is something else going on.

I'm back at the hospital by 7am, they get Dad ready and send him down to the Endoscopy area... doesn't if figure, our regular GI shows up and tells the on call GI the ERCP is not necessary, his levels are fine, but to do just an ultra sound.

The ultra sound comes back fine... so the conclusion, is that he must have picked up some kind of stomach flu that has been going around.

You don't even have to say it... I will be checking Dad's temp and watching him closely!

We have an 8:30am appointment with the oncologist tomorrow morning, about a chemo plan. I hope things go good.

My thanks to everyone,

Dianne

13

(25 replies, posted in General Discussion)

It's 11:54PM and I just got in from the Hospital after being there for 8hrs. Dad still has a bit of a fever 38.2 C or 100.76F. They've run blood tests and urine tests, things look normal. But now he's got a bit of diarrhea.

They have him hooked up to antibiotics and will be doing an investigative ERCP to see how things are looking with the metal stent.

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Susan,

Nothing random about giving him antibiotics. We have a supply in case he has a fever due to past experience. Sometimes it's taken a few days before an opening for an ERCP can be done, even if it's urgent.

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I'll be heading back in a few hours, so I'm going to bed now to get some sleep.

Thanks for all your help everyone,

Dianne

Sorry,

How do I attach a PDF file that I made of the Mayo file they sent me? It's actually a Word document that I made into a PDF.

Dianne

Thought I would post what my experience has been with Mayo Clinic, Rochester Minnesota.

At their web site you are instructed to send all imaging and Dr. reports to them, to which they give a reference number. With-in 2-3 days a Dr. looks over the imaging and reports, decides if they have anything to offer and if they do, an email is then sent with a pre-arranged appointment date and time.

They do not tell you what they have to offer at all, you either accept it or you don't. If you do accept the appointment then you are required to give them a deposit of $3000-$5000, possibly more.

Find attached the response that was sent to me, I've blacked-out personal information.

D:\Users\Dianne\Documents\Dad\Medical\Mayo Clinic International Response.pdf

There is however the less expensive "E-Consultation", which you must have a Dr. in your own country contact them. Pricing for this starts at $750.  They would not give me this information in an email, I had to phone for this info.

16

(25 replies, posted in General Discussion)

At 5pm Dad's temp was 102! I've popped an antibiotic in him, and will get another one in him in the morning. Dad said his urine and stool are the proper colours, but I'll call our GP first thing and see what he says, if he gets worse then off to the ER.

Damn! He's seeing the oncologist this Thursday to talk about starting chemotherapy. I'll bet they wont want to do chemo while he has an infection. Does anyone have any insight on this.

He's lost his appetite again too. Augh! Up and down, up and down!

Thanks everyone,

Dianne

17

(21 replies, posted in Introductions!)

Turkey sounds like a great idea Kris, but my Dad just decided he didn't want to go to Hungary before starting Chemo. So my guess is he wont want to go to Turkey either.

There are a number of medical treatments in Canada that are used for one thing and not covered for another.  However, they are often brought to the attention of the public, with great embarrassment to the Government through the media, so much so that they have to make it available for other uses. This happens all the time.

I think by going to another country will not help anyone here in Canada. I still have to find out about the Cyberknife in Hamilton to see what they say, because it was the radiologist at Princes Margaret in Toronto that gave me some info on Cyberknife when I asked him about it. I'm waiting for a Dr. to call me back from Hamilton. 

I am not afraid to go to the media for my Dad and others to follow.

Dianne

18

(25 replies, posted in General Discussion)

I just took his temp, it's 98.7, so it's gone down. I do have a slue of antibiotics (Cipro) here Rick, maybe I should just start him on it? Oh crap, but if he takes the antibiotic then he has to stop the Warfarin again!

Rick are you saying that an infection can start, even weeks after the stent was put in and even if there is no blockage? I thought the blockage caused the infection, due to the bile not getting out... so maybe he's blocked up again...oh this is not good.

I'll keep checking his temp and if it goes back up I'll be calling the Dr.

Dianne

19

(25 replies, posted in General Discussion)

Good thing you mentioned the blood thinner (Warfarin), I forgot that he started taking them again too.

Thanks to you too Jeff.

20

(25 replies, posted in General Discussion)

Good morning to you both and thank you for your quick reply.

I took Dad's temp about an hour ago, it was 99.1, and I just took it again and it's still 99, the high end of normal range.

I just gave him a Tylenol to see if that helps and will check again in an other hour.

I'll let you know how it goes, thanks.

Dianne

21

(21 replies, posted in Introductions!)

I am sorry to hear about your friend, but as you can see above you've come to the right place for help. Your friend, has a good friend in you.

I'm also in Canada, but in Ajax, Ontario just east of Toronto. The CCF has something in the works for international folks and is working at putting together a Canadian page... in the mean time I have posted a number of things in the "Alternative Treatments" section that pertain to Canadian resources and links to them, including Cyberknife, Homeopathics, Naturopathics.

There is little to no information on CC at the Canadian Cancer web site, which has brought all of us Canucks here.

Compared to the US, Canada is behind as far as "other treatments", such as the Cyberknife. There are only a hand full in Canada, but it's currently only being used for brain tumours and one or two other types of tumours, so unfortunately it likely wont be covered by OHIP if used on CC.

I am still researching Cyberknife for my Dad, and will update as we go.

Let me know if you have any questions and come back often, we are all here for you and your friend.

Dianne

22

(25 replies, posted in General Discussion)

Hi everyone,

My 81yr old Dad has intrahepatic CC and has been fitted with a metal stent, which they did about 4 weeks ago. He is not doing any chemo at the moment and has not had any radiation.

This morning he complaint that he had the chills in the middle of the night. He had this once before about a week after they put the metal stent in, but has been fine since.

Anyone have any idea's as to what could cause this? Is it the cancer it self, the liver, his immune system, reaction to the stent,  everything?!

Thanks,

Dianne

What is the CyberKnife Robotic Radiosurgery System?

http://www.cyberknife.com/

http://www.cancercare.on.ca/common/page … leId=58029

http://www.ohfoundation.ca/projects/cyb … upport.pdf

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As of 2010, Cyberknife is available in Canada at:

Notre Dame Hospital / Centre Hospitalier de l'Universit

http://www.cadth.ca

Just occurred to me to ask this question of everyone here.

Would it be beneficial to see a Hepatic specialist? Has anyone seen one, what was the outcome?

What would they say about how to prevent stents from plugging up and overall liver health... are their any meds, herbal remedies etc. to help keep the healthy part of the liver going? 

We're going to see our GI Dr. in an hour, I will ask him what he thinks, and possibly see if a referral to a Hepatic specialist is warranted.

Looking forward to your replies,

Dianne