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