Dad Diagnosed at 81 – Ontario, Canada
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- This topic has 16 replies, 9 voices, and was last updated 14 years, 9 months ago by marions.
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March 28, 2010 at 2:36 am #36858marionsModerator
Diane and Ray and all other Canadian Citicens…..Possibly, we could work toghether under the umbrella of the Cholangiocarcinoma Foundation. I would love to see more awareness brought to this disease, in every country. This cancer sees no borders neither, do we.
MarionMarch 28, 2010 at 2:10 am #36857rayeMemberDiane,
I’ve had little to no luck with making the Canadian Cancer Society over the last two years aware of our disease. I have thoughts on this and have been driven to the point of disappointment with my local society’s thoughts on how I can help them. I won’t get into that as it infuriates me to even get started talking about it. I hope others here on the forum have had better luck with their local cancer society. I certainly haven’t. I sound like sour grapes, so be it.
March 25, 2010 at 7:03 pm #36856marionsModeratorDianne….this is a great link. Would you be so kind and repeat it under “Alternative Treatments’? This would assure it not being lost in the thread. I will gladly do it for you however, it is always nice to see these important links connected to the original poster.
Thanks a million,
MarionMarch 25, 2010 at 3:15 pm #36855diannehSpectatorHi Alie,
I`m glad that we have found the CC site and a Canadian connection so we will be able to help each other. I don`t have any kids to worry about, just a husband! I work from home and can do research and make phone calls as necessary. I check my email often.
Please find attached a link to Ontario Association of Naturopathic Doctors. You can do a search to find one in your area. I think it`s worth a try and I’ve heard that some of them will even come to the hospital to assess and administer. I don`t know how well that would go over with the hospital, but hay it`s your Mom and if your Mom wants to keep going then get it for her.
I will speak to my pharmacist too, she is very much into naturo/homeo alternatives, and if she’s into it, there must be some good to it.
http://www.oand.org/index.php?page=home
I am thinking about you, your Mom and your Dad too.
Dianne
March 25, 2010 at 1:27 am #36854scragglesMemberDianne,
A break is the best thing for my mom. She is so weak right now. She has lost 25lbs, and you must also consider that somehow she is losing weight but gaining alot of fluid. She had 3L drained today. Draining the fluid doesn’t seem to do much for her in terms of increasing her appetite.
She will have a CT scan done tomorrow at PMH where she is staying. Hopefully it won’t take too long to get the results back. We are hoping that the few chemo treatments will be enough to see a difference but the doc pretty much told us that you’ll know the chemo is working if the fluid buildup gets better – and in her case it’s getting worse. Once we know if the docs will want to continue with chemo i will mention homeopathic medicine to her. If it ends up being our only hope, it’s better then nothing.
My mom also has no appetite. There are many pills that can help with this. My mom has tried many that don’t work for her, but she is on something new now for the past couple of days, and she seems to be eating a bit more. I can get the name of it if you want.
I sincerely wish you and your dad all the best.
March 25, 2010 at 1:17 am #36853darlaSpectatorOh Dianne,
I am so sorry for what you and your family are going through. None of us here wanted to deal with this, but unfortunately we all have had to. Just know that you are not alone. We are all here to help and support each other. My best to all of you. Take care and let us know how things are going.
Love & Hugs,
DarlaMarch 24, 2010 at 10:30 pm #36852diannehSpectatorThanks for the welcome message everyone.
Alie, so sorry that things aren’t good with your mom… could it be that a break right now is the best thing for her? Have they done any more imaging to see if the chemo they have done has done anything? Has she lost a significant amount of weight?Have you thought about a homoeopathic Dr.? I spoke to a lady a few months ago while my Dad was getting blood work done, who’s mother had lung cancer. When they started her on chemo she just stayed in bed for months on end, they gave only months to live, the daughter took her to the homoeopathic that set her up with Vitamin C injections and some other things. She’s now out of bed, helping to prepare meals, helping with the kids etc. I will certainly be looking into this! In fact the homeopathic is in Scarborough, I need to look for his contact info.
My Dad is very over weight and has likely lost about 10lbs since his diagnosis. But I’m hoping that when the metal stent is in, his appetite will get back as close to normal as can be.
After talking with the gastro guy a few hours ago, he said that retaining fluid is very common in cancer patients due to hormones, but I don’t know if that’s why Dad feels full and not eating like he use to. When I think about it, loss of appetite was actually the first symptom, especially when he didn’t want any more roast pork.
God I wish we didn’t have to deal with this!
March 24, 2010 at 5:56 pm #36851gavinModeratorHi Dianne,
Welcome to the site although I am sorry that you have to be here. This is the best place to come to for support, help and information, so I hope that you keep coming back as you will find all of this with us. Please feel free to ask any and all questins that you might have and I am certain that someone will be able to help.
And thank you for sharing your story with us all. I came here back in 2008 when my dad was diagnosed with inoperable CC and his treatment was PDT. He also was jaundiced pretty badly and that was his first symptom that showed. He had a metal stent inserted and that certainly helped with his jaundice.
And yes venting here certainly does help!!!
My best wishes to you and your dad,
Gavin
March 24, 2010 at 5:28 pm #36850scragglesMemberDianne,
Hi there, I doubt we will cross paths as I don’t attend my mom’s doctor appointments, I have 2 small kids at home, so my dad takes her to all of her appointments.
The doctors will have a better idea about your dad once he is staged. My mom is only 56 and she has stage 4 CC. The chemo combo for this type of cancer is very aggressive. They tried it for my mom because of her age. It looks like chemo may not be much of an option for her anymore as it is making her very weak. She is currently staying at PMH on the 16th floor, palliative care. She is so weak she can’t even sit up on her own. She has not been able to complete more then 2 cycles of chemo in a row because her proteins, or WBC’s, keep dropping. The docs said that 1 more chemo tx would probably mean the end for her. She currently weighs 98lbs, and has pretty much given up eating. Does your dad have ascites? (fluid buildup in the abdomen) my mom has it really bad, today they are inserting a perm cathator so that she can be drained more often. Feel free to e-mail me if you have any questions apreisig@rogers.com
AlieMarch 24, 2010 at 1:58 pm #36849diannehSpectatorScraggles, sorry to hear about your Mom. Have not meet Dr. Knox, but meet with Dr. Hedley, boy he’s a real character. I think it’s a good thing that your Mom is a candidate to receive gem/cis, they obviously think she’s physically strong enough to handle it.
Maybe we will cross paths at PMH, we will be there April 13, for the follow up CT and then again on April 21 to see Dr. Hedley. How about you?
Dr. H said that they see about 100 cases of bile duct cancer per year; it’s a relatively rare cancer; about half the cases respond to chemo/rad; without treatment, some go on for only a few months and others go on for years; some dye from the treatment, while others have been cured by it. It’s a 50/50 draw that I wish we all did not have to deal with.
Do not forget, no change is good news too. It just my need a little more time. I have every reason to believe that your mom will do well, I’ll be thinking about you.
Jennifer, I believe your Dad’s age is a BIG plus for him. What cocktail are they giving him, how often, and when will they do a follow-up CT?Like I said no change is good news too!
March 24, 2010 at 1:19 pm #36848diannehSpectatorThank you all for your kind words and prayers, it is very comforting to know that your all here for us.
There is a lot of information out there, but I’m very surprised that the Canadian Cancer Society had very little to almost nothing about bile duct cancer. Although it is mentioned in the liver section, but is not at all found if you do a CC search. I think this needs to be changed and will contact them about it.
For the moment my Dad is waiting to get the metal stent put in, scheduled for April 7th, but due to the shade of yellow he’s been emitting the last few days it will likely be sooner, we see the gastro this afternoon. Don’t want to go through the infection again, it could kill him too.
An on going comment from all the medical staff we’ve seen, is that they can’t believe my Dad is 81, he looks good for his age! I think it’s the beef he’s packed on since he retired 16yrs ago. He really is pretty good considering, although since the blockage showed up his appetite has changed, he feels full a lot, wants to eat his favourite foods but then only eats half of what I put on his plate and does not want more, highly unusual. This is very disturbing to me, since we love to cook and eat, although it just maybe a saving grace that he has those extra pounds to spare.
Dr. Hedley (oncologist) told us that my Dad may just receive Gemcitabine, the Cisplatin maybe to powerful for him and cause further damage to other organs and cause worse side effects. I think Dr. Hedley is thinking that lets play it by ear, see how he tolerates Gem, and see if it even does anything to the tumour, and in a few more weeks have another CT and see if there is any change, if there is no change then leave him alone for now.
Again it’s up to my Dad, but he will likely just do what the Dr’s. tell him.
Either way I’m happy that’s he’s still here and in relatively good health and still independent.
Dianne
March 24, 2010 at 9:47 am #36846magicSpectatorI would think it better to err on the conservative side given his age and definitely go for quality over quantity,more dignified at age 81 Janet
March 24, 2010 at 9:27 am #36847katjaMemberDiane
You’re so right, we think our parents are invincible and it’s the hardest thing to realise they are not. Especially when they are trying to protect us from the knowledge.
Is your dad going to wait to decide about chemo? Would they be giving him Gem/Cis?
Stay strong for him.
KateMarch 24, 2010 at 3:18 am #36845lainySpectatorDear Dianne and welcome to our wonderful family! It sounds like you and your dad have pretty good hold on things and you are right the decision will ultimately be his. He is blessed to have you along on this rocky journey. Please let us know what the decision is and how he is doing. And yes, feel free to come here to inform, advise or vent.
March 24, 2010 at 2:59 am #36844scragglesMemberHi there, I’m sorry to hear about your dad. My mom is also being at Princess Margaret. Her Oncologist is Dr. Knox. She was diagnosed with stage 4 in Dec/09 She is only having chemo treatments (not radiation) She is on gemcitabine and Cisplatin. She will have a CT scan at the end of week, and we will know if the Chemo helped. I wish you guys all the best.
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