81yr old Dad
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I really hope you all get that trip to Hungary, Dianne. My very best wishes to you & your dad – & Good Luck with his treatment.
Julia
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.
Dianne….Facing this cancer brings with it a range of emotions including, the feeling of fearfulness. Looking back at the experience thus far clearly you have demonstrated already how much strengths you really have. And, you will be amazed as to how much more you are able to muster. Your Dad has expressed his feelings of wanting to move forward with the treatment and he will need much support from everyone. I do not see you faltering instead, I see you growing with the emotional and physical demands made on you. Dianne, you are a wonderful daughter and are great support to your dad.
I also wanted to mention to you the Caregivers Bill of Right.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3473
And remember we are here for you.
Best wishes,
MarionI just realized I never responded to your question about dad’s chemo. They planned to start with 8 rounds of treatment. It’s one week high dose, one week low dose, one week off. He’s had 3 rounds so far, and it’s not going too bad. The high dose week isn’t much fun for him – they give him steroids, so the first few days (when he’s on them), he has more energy and isn’t feeling too bad. By the third day after the treatment, he’s tired, and not feeling well at all. Sleeps almost all the time. That lasts 2-3 days. His low dose week isn’t nearly as bad… a few days of feeling “off” and then he’s fine. His week off is heavenly in comparison. Still tires easily, and isn’t always feeling 100%, but still much better. He still has his hair, but it’s thinned considerably, and will probably all be gone eventually… same goes for the eyebrows.
His blood tests have all been fine since the chemo started. We were concerned that with an external drain, there would be a greater chance for infection, but so far so good! He eats what he wants… the fat doesn’t bother him, so he gets as much of it as he’s willing to take!
On other news, it sounds like he may be willing to travel with us in June to Newfoundland (where he was born) to visit family for a week, with quick stop overs in Nova Scotia and Ontario to visit some family and friends… we’ve never all gone together, and I think it would be an amazing trip, so really hope he decides he’s up for it. He just wants to talk to the doctors and make sure it will be okay first, and then we will plan it for the end of his low dose week and week off so he’s feeling at his best for the trip. He’s not a spontaneous kind of guy at the best of times, so I don’t imagine it will be a quick decision for him to make!
I hope your goal to make it to Hungary comes true – I think it’s a great thing to focus on. Dad has also been big on goals since he was diagnosed. He really didn’t think he had long at the beginning, so his first few were cute and funny… he was diagnosed at the end of January and his first goal was “I’d like to see the opening ceremonies of the olympics”, and then “well, I’m still doing okay, so now I’d like to make it long enough to see the CLOSING ceremonies”… ha ha. Anything for them to focus on is a great thing.
Thinking of you and your Dad Dianne… I know where you are and how you are feeling – almost exactly. It’s not a fun place to be, but it’s great that you are able to be there for him. Praying you get good news from the oncologist about treatment.
Jen
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,
DianneThanks for going into detail about what to expect stent and jaundice wise, i can pass the info on to Mom as she has been worried too. Lack of patience runs in the family!!
My Dad isn’t on any antibiotics, He had a temp the day after the stent was put in but after that he was fine. I might mention this to his doctor though.
Thanks again for the info.
Hope your Dad is still going to go on his trip to Hungary.
I know what you mean about losing OUR hair when they are on Chemo too!!
Take care
Hi 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
Hi Dianne, My Dad is 62. He came out of hospital Friday after having his metal stent fitted on the 19 April. He still looks yellow which is a worry, I keep thinking the stent is not working but the hospital checked his levels before he came out and apart from a blip on the one day where it went up it has been falling between 20 – 40 per day. I suppose I just need to be more patient! He has got to have a EUS and biopsy in a few weeks time when his levels are ok and then he can start Chemo.
Since coming out of hospital he has been catching up on 5 weeks worth of lost sleep. He is also eating and drinking alot too, which is nice to see.
We all have a rollercoast ride ahead of us but with all the love and support we will ride it out together. My Dad had Colon cancer 9 years ago and beat that, hopefully he will beat this too. If anyone is detemined to its my Dad.
Best wishes to you and your family
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
DianneH,
I was on the Gem/Cis combo and had very little side effects (only 52 yrs old though). The meds they gave me for nausea were terrific (Emend, Aloxi, Decadron and Zofran) and then Compazine if the others didn’t work (but I didn’t need it). I had 2 infusions (a week apart), then 1 week off (called a treatment) and I had 5 treatments.
What I did experience was tiredness the first week, then began to get a little better the 2nd week and was back to “normal” the week off. I know that the Gemcitabine (Gemzar) can make your white blood count get very low, but there is also something they can give you to keep it from doing that (a shot right after infusion forcing your bone marrow produce more white blood cells). Gemzar can also (50/50) cause hair loss. I lost hair, but only when my white blood count dropped. When it came back up, the hair loss (thinning) stopped.
I know that everyone reacts differently to all the meds, so take that into account, but know that there are meds there to help. Make sure that he doesn’t just suffer thinking that is what he has to go through. ASK about everything. Also, chemo can rob from your muscles, so I was told to eat more protein (not necessarily the fat, but protein – eggs, cheese, meat / fish). It helped, and little walks helped to keep up the energy more.
Good luck, and remember to ask as many questions of the doctors. Don’t just accept what happens. And of course, post here as much as you need to. Someone should have answers to help.
Linda Z.
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.
Dianne – I’m in Alberta (calgary), and Dad’s only option was chemo – he’s on the same combo as most people on this site (gem/cis I believe). He is doing okay with it… a few days of feeling okay afterwords (probably due to the steroids he takes post treatment), then a few days of being pretty exhausted and feeling “off”. We have no idea if it’s helping to slow things down or not… he hasn’t been offered another CT, so unless he starts feeling more pain, I think he will continue with the treatment.
The external drain certainly isn’t ideal, since none of the bile is going through his system so he’s lost a lot of weight. He also does not eat very much at all – feels full very quickly, so tries to eat smaller amounts throughout the day.
I hope you and your father can find a treatment plan that you are comfortable with and that works for him… it’s sure not much fun watching them go through what they are, and going through what we are as grieving daughters…DianneH wrote: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
How long did it take for your Dad to not be so jaundiced after his stent was fitted?
Our first doctor told us that my Dad had months to live as his tumor was inoperable, we have now been offered Gemcitabine and Cisplatin, which is considered to be the standard treatment for advanced cancer according to Cancer UK. Just need to get his bilirubin levels to 50 first.
Hope your Dad enjoys his visit to Hungary. Wishing you and your family all the best for the future.
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
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