dianneh
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Jen,
Thanks for your Dads experience and update, it’s going to be of great help to prepare us for what may happen.
Although like your Dad, spontaneity is not my Dad’s thing either. Over the weekend he decided he doesn’t want to go to Hungary now. Too much too fast, and he’s concerned with possibly getting stuck there, be it due to getting sick or caused by a volcano! I have to admit that I’m rather glad that we’re not going.
Marion, my positiveness was pretty low, but thanks to you and everyone else here, I’ve got some back. I think once he’s started the chemo, and I know what to expect and how to deal with what ever comes our way, I’ll be able to relax. It’s the unknown that gets you and it wont let you sleep. Thank you.
One saving grace is that the nice weather is hear, seeing the sun shine makes things seem better. It will keep my mind on the garden and working on creating some art work. Global waring seems to be bringing us an extra month of spring!
So for now, our short term goal is the get through the first round of chemo, and then think about a road trip to Nova Scotia to see the Brick we purchased in my Dad’s name, at the famous “Pier 21” (the Canadian version of Ellis Island) where he first set foot in Canada. They are also interested in doing a audio recording of my Dad’s journey to Canada while we’re there. Kinda of exciting!
The Long term goal is to make the trip to Hungary, this time next year… leaving us lots of time to make plans and something to look forward to. I think this is even more important to do.
Thanks again everybody, I wish I could hug you all.
The GI Dr. who did the ERCP, put my Dad on antibiotics as he was doing the ERCP and prescribed Cipro to take at home, one twice a day for 10 days following. We also have a big supply in case he goes jaundice again and we have to wait for an appointment or scheduling of a new stent.
You know the metal stents are on average, good to last for 8-12 months? So it might be a good idea to have a prescription at the ready in case things take a turn, especially on a weekend when things are open or are closed early. Seemed like every time Dad started to go jaundice it was near the weekend, and we dreaded the fact that we could end up at the ER for hours and hours.
As for the trip to Hungary, Dad has decided that it’s too short notice, with lots of juggling things around for me and my husband etc. so, lets just get on with the chemo. The goal now is to make the trip this time next year… making goals about the future are a big part of all this… even if they are next week or next month.
So, we are now waiting to hear from the chemo-oncologist to make plans for treatment. God I hope it works… now I’m getting scared…
Thanks for listening,
DianneHi Andie,
I totally understand how your feeling, seeing them eating the way they normally would, does my heart and mind a lot of good too.
I know your anxious, but your Dad has only had the stent in for better part of a week, you gotta give it a lot more time.
My Dad was so yellow, he looked like he was glowing, and his lovely silvery grey hair looked amazing against it! Out of a scale of 1-10 (10 being the most yellow) I’d say at the time they put the metal stent in he was a 10, he was just humming with yellow. About a week later he went down to a 7, and now, three weeks later I’d say he’s at about 2-3. He still has a slight ting in the whites of his eyes and a touch on his shoulder and chest area but I’d bet that in the next few weeks it will be mostly gone. But then it may never totally go away.
Is your Dad on any antibiotic? You need a really strong antibiotic like Cipro to kick this kind of infection, others just wont do it. I’m more concerned with watching my Dad’s temp. in case some infection sets in due to the ERCP and placement of the stent. I have two digital thermometers and one old fashioned one, and take his temp at least once a day the first week after the stent was installed and just once every couple of days now, just to be in check.
We’re going to get through this together Andie!
Dianne
JenniferS and Andie, how old are your Dad’s? I hope they are doing well… thank goodness your Dad’s have you.
Linda Z, thanks for your insight and information. I will be printing some of this out for my Dad to read, so it’s not just me telling him things all the time. Hope you are also doing well?
Marion, after responding to your earlier comment (how does he feel about chemo) I decided to ask him again. He’s response was “what other option do I have, I may as well try it, and like you said (me) if you change your mind while doing it then I can just stop, and if the Dr’s. feel that it’s not helping me, then I’ll stop. There’s still radiation too.”
Today Dad had some bad indigestion from a day old Langous (deep fried dough, very Hungarian) he ate for breakfast (yuck), and got very put off by the whole thing, saying things like “oh we better stop the trip to Hungary” and so on, but he just sat there trying nothing to relieve his symptoms. The indigestion seems to be gone now, but I guess he just doesn’t understand that his body is different now, he can’t eat greasy stuff like that.
Gees I hope it’s not his gallbladder! Apparently it’s full of stones.
What am I gonna do when he’s on chemo!?!? I’ll be loosing my hair too!
Thanks everybody,
Dianne
Hi Damamma,
Your sister is way to young to be dealing with all this, but thank goodness she is lucky to have you!
We are from Ajax, ON, east of Toronto. My father was recently diagnosed in January, with CC, but has about 30yrs on your sister.
We’ve had second opinions also, the second being at Princess Margaret in Toronto. We are seeing Dr. Hedley, senior staff physician of chemo-oncology and Dr. Bayley assistant prof. of radiation oncology.
I too have looked into the Cyberknife option, it’s only available in Hamilton, ON and Montreal, QC. I spoke to Dr. Bayley about it and he is aware of it, but not very knowledgeable about it. However, what he did tell me was that it’s being used mainly on brain tumours and I think he said pancreas, but not for CC. He also said that even if we could have access to it, it’s not covered by OHIP, so you would have to pay for it out of your own pocket, and that it’s very expensive (he didn’t say how much). A friend who is an oncology nurse added, that it may also be an issue of weather or not the person running the Cyberknife is only skilled/trained at using on the brain an pancreas.
I’m still interested in seeing if we can access it for my Dad if need be, as it seems to be doing wonderful things else where. Maybe we can team up to put pressure on them, if we have to.
All the best to you and your sister,
Dianne
Andie,
Awe gees Andie, that’s terrible… our GP told us flat out, that this would probably kill my Dad. My ears are still ringing from it… I wanted to tell the SOB to just shut up! However, since my Dad was able to have the metal stent put in, our GP is now saying a year. They have to do this, it prepares you for what could be a reality, and we all know that we don’t live forever. I know it’s hard…
Dad had the metal stent inserted March 30. He’s still has a little ting of yellow on his upper chest and shoulder area, but his eyes are almost clear. He has never had any real itching during all of this, however early last year, long before he was diagnosed he complained of itchy ankles, but not an all over itch.
From the last time Dad had the second plastic stent put in it took about 2-3 weeks for the bilirubin to come down, but it did!
Gem/Cis is the standard here also, but there seems to be other treatments other than these, such as Hepatic Artery Infusion, Arterial Chemotherapy, Chemoembolization, Transarerial Embolization etc., that I have read about online and on this site, that seem to be going on with good results, but not here in Canada.
I mean gees if it means sacrificing a little less liver function to live, then it should be done, better than a tumour growing and growing. But then it’s not us going through this. Although if given the chance I think our Dad’s would do it. So we have to be their advocates, as I’m sure or parents are similar in that they don’t want to bother anyone, or are afraid to ask, and just don’t want to learn about this stuff.
Thanks Andie, and all the best to your family too, keep in touch.
Jen, how long has your Dad’s chemo treatment been going on for? They told us it would be once a week for 7 weeks and then off for a week, then likely they would do a CT scan. How are his blood tests?Eating smaller amounts is good and what the Canadian Cancer guide recommends. Although, should he be eating higher fat content foods, or can he tolerate it? I read an article somewhere, that ginger supplements have been proven to help with nausea and appetite.
No it’s not fun at all watching them go through this, but at least it has prepared us, and taught us that we need to be more kind and patient with our loved ones.
At least we all have each other to talk to here… I sure do appreciate it.
Is the new stent metal? I don’t recall you mentioning if it’s plastic or metal.
Could be just that the stent has slipped out of place. That’s what happened with my Dad’s last “plastic stent”. They are no where near as good as the metal.
It will be interesting to see how our Dad’s compare with their stents. My Dad’s tumour has grown, almost doubled in size, but they did not say the stent was the cause of it pushed out.
Our GI told us that body movement can cause them to become out of place. He also said it’s possible that if they do not dilate the tissue enough, to really get it up in there, it will wiggle back out on it’s own too.
Let us know how it goes.
All the best to you and your Dad.
Dianne
Jen,
Thanks for the kind words. Do you mind telling me about what is happening with your Dad? What kind of treatment are they offering etc. It seems like the only option here in Ontario, Canada is standard Chemo and Radiation. You can email me directly if you’d like: dianne@horvath.ca
I hope that your Dad is doing well even with the external drain.
Marion,My father’s attitude about chemo is this, even though he’s 81yrs of age his mind is still good, and wants to fight it. He’s seen examples of other’s around his age, that have had chemo treatments for other cancers with poor prognosis, but have beaten the odds and have done pretty good. These are his thoughts not mine.
Dad has been buying “Cash for Cancer”, Princess Margaret Hospital Lottery Tickets for years now, so why stop gambling now, I guess.
I’m feeling a little war torn right now, I feel like the Dr’s. have not given us anything that even smells of hope. Although none of the specialists have said anything about days/months or any time frame really, but if we do nothing he will experience pain, fatigue, loss of appetite and the we will need to talk about palliative care.Regardless of tumour growth, since Dad has had the metal stent in, most of his natural colour has returned, and his appetite has gotten better, closer to normal (he’s eating everything on his plate). I know this could still be the honeymoon stage, but I know what I’m seeing!
Dianne
Hi Andie, sorry that you and your Dad are dealing with this disease, but know that you’ve come to the right place.
Might be a good idea to re-post but with a topic title asking for UK information, you might get quicker responses from fellow UK members this way.
CCF is in the process of providing international sections for other countries. I’m in Canada, so I can’t direct you to any clinics or hospitals there, put can tell you that there is a great deal of good information within this site that pertains to all of us.
Sounds like your Dad’s treatment is already underway… stenting is very, very important and the most immediate treatment needed to extend his life.
You don’t say why it’s inoperable? Where is the tumour? How old is your Dad? How did they find it?
You and your Dad have great attitudes, which is very important.
Hang in there Andy,
Dianne
Hi Ellen,
Sorry to hear about your Dad… I can very much relate to you, my Dad just turn 81 in December 09 and was diagnosed with CC tumour in the intra-hepatic (in the liver) bile duct, at the end of January 2010.
What I can tell you about our situation is that since the initial diagnosis they’ve inserted a plastic stent twice, due to it blocking up. Both times it took awhile for the jaundice and fever to go away, and for the levels to get down to a safe, but not normal level. When bile is not being drained from the body properly it causes the liver to swell, and the bilirubin to rise, this is expected and why stenting is so important.
We live in Ontario, Canada so our medical system is different here than in the states. However, initially we started at a local cancer clinic near where we live for all of this above and then got a referral for second opinion at one of the top Cancer centres in Toronto, Ontario, they see about 100-200 cases per year.
So, I agree with Lainy and Lalupes push for a second opinion, but at a larger Cancer Centre that has seen and dealt with CC more than once before such as Mayo Clinic. This is a rare form of cancer that not many have ever had to deal with.
From what I understand the plastic stents are a temporary measure, until surgery is ruled out. Surgery is not an option for my Dad because of other medical issues (reduced kidney function, high blood pressure, stable angina etc.) the surgery could kill him. So knowing this, a metal stent was inserted, which is more permanent and much bigger and better than the plastic ones. Chemo and radiation are still options for my Dad, which I think we will know more about next week as a follow-up to a recent CT scan.
Could it be that it’s just not a suitable time to do surgery on your Dad, have they said no to surgery, chemo and radiation completely, if so is it because they are limited to what they can do at this particular hospital?
Could you please give more details about your Dad’s situation ie: which bile duct is blocked, do they feel it’s a fast or slow growing tumour, what imaging have they done and what the results are, has it metastasized etc. This would help us have more incite and provide more info to you.
Be positive,
Dianne
I think it’s a good idea to keep this thread going too, as it may inspire others to start an initiative where they live and be a useful reference.
Here are a few of my thoughts on some of the things that Marion and Raye have said:CC Foundation: Canadian Content
– yes a Canadian page within the CC Foundation would be great. Marion, could you tell us what you have started already?
– my suggestions would be to add: a) on the main page of CCF an “International” title to the menu, and b) the following page (depending on how web savvy your web designer is), maybe a click-able map of the world would be helpful.
How do I envision a Canadian Branch?
– it would depend…I think for the time being, a presence on the CCF foundation site is a good start… down the road there could be a Canadian site… I guess this would be where Raye would come in with his web site experience, which then raises more questions.
– a listing of physicians?… when my Dad was first diagnosed at Oshawa General, only one of the GI Dr’s. knew of the surgeon specialist at Princess Margaret Hospital in Toronto. In Canada, we can’t just go and find our own Dr’s here, we have to be referred by one, usually your GP.
– a listing of Centres? Everyone pretty much knows where they are, you either live near one or are sent to one. Again you have to be referred, and they all have web sites.
– I see from the “Medical Advisory Council” page that there is one Canadian, Professor Charles Blanke British Columbia Cancer Agency, how involved is he at the Foundation, can we go to him for some suggestions?
– could CCF do some sort of a questionnaire, a “leave your comments and recommendations” sections regarding suggestions, changes, modifications to, Dr`s, hospitals, information resources etc. Maybe then Raye and I could go over them and bring them to the attention of the Canadian Cancer Society. It could help to get them on board.
Raye, what was your experience with the Canadian Cancer Society? Maybe once we have some feed back from the questionnaire, comments and recommendations, you and I set up an appointment to speak to some one in person, at CCS? We would need to put together some sort of presentation… I`m not afraid of making a pest of myself.I`ll email you soon Raye.
I don’t know if either of you are familiar with SKYPE? It’s a wonderful and free way of communicating, speaking live (if you have a microphone) or type chat. Out of country is also free, as long as we talk SKYPE to SKYPE. You can use it to call cell numbers and land lines, but then you have to purchase SKYPE credit.http://www.skype.com/download/skype/windows/
My Dad just cut this story out of the Toronto Sun Newspaper, I found the same article online.
http://mobilelocalsocial.com/2010/03/nanobots-assemble-form-of-the-cure-for-cancer/
Found this interesting article about heat treatment.
Heat helps in cancer treatment. http://www.canada.com/health/Heat+helps+cancer+treatment/2020196/story.html
All the best.
Dianne
Hi 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
Thanks 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!
