Hi From Australia
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Hi Lynn,
Yeah I have a very supportive family and network thanks. Not a week has gone by for 40 years where I haven’t wished I was back in the Northern Rivers. Until I got diagnosed, services are much more readily available in the city.
I’m not sure what services you have available to you but on top of my oncologist I also have a Palliative Care Doctor whose sole purpose is to look after and help me balance my quality of life. She has been much more useful than I thought at the beginning in helping me keep me thoughts balancedand my priorities straight. I am a public patient btw.
I want to stress I’m just a patient and know bugger all about medicine but cancer seems a wierd thing in what might and might not work. My father in law was given 6 months to live over 6 years ago (not CC) and things have just started deteriorating recently.
As Lainy has said you need to have a talk to Greg and then see how you progress from there.
Tony
Dear Lynn, when Teddy had to make the decision of to chemo or not he simply asked the ONC for a “guesstimation” of how much time the chemo would buy him and the ONC said a month. That was after a 5 year tough fight. Teddy said he would rather have quality time (some kind of quality, right?) Then he asked the ONC what would you tell me to do if I was your Father and the ONC said, not to do it. You and Greg should have a heartfelt talk and then take what he feels to the ONC. No question is silly so when you next see the ONC ask away! Like chemo vs no chemo what are the guesses to time limits. We know that nobody can really say when it comes to timelines but according to what everything shows the ONC may be able to help in your decision.
Hi Everyone,
Well after just replying to 2 posts I thought it time to inform you of Greg’s progress (or lack there of)
In my original post I said that Greg had started chemo. Because he has his kidney problem, his Oncologist only put him on the drug Gemcitabine. It is usually used in combination with Cisplatin but Greg’s kidneys could not handle the 2nd drug. He has had 1 cycle of Gemcitabine, ending in 2 infections in the blood and hospitalisation. He recovered from that and started Day 1 Round 2 of chemo last Tues (5 days ago). Again he had to be hospitalised with a fever last night.
His Oncologist told us before Tue if this drug was too hard in him, he may try a new one called Taxol. I googled it and its other names are Paclitaxel or Onxal. Does anyone know much about this drug? The Doc told us it is not quite as effective as Gemcitabine and will cause hair loss (Not that that is a major concern).
So once again that brick wall has stuck itself right in front of us with his 1st chemo experience.
I am wondering if we are doing the right thing. I never thought I would say that.You want to prolong Greg’s life but at what cost? Being constantly sick and tired and having no desire to do anything much at all. He is not the boy I know! From what I have read chemo can prolong life but only by a few months. Once again I suppose it depends on the individual and the type of drug. Does anyone have any insights into how much time chemo can prolong your life?
Anyway, we will soldier on yet again and see what the Doc has to say. Maybe this new drug may help. Will visit Greg in hospital this morn.
Thanks for being there everyone
LynnHi Kernos
Thank you for your input- so sorry to hear you have CC but it’s great that you are able to participate in clinical trials. I hope you have a network of friends and family to support you. Do you?
I agree with your attitude to take each day as it comes and get out and enjoy time with your family and friends. Make sure you don’t stay in your room too long by yourself if you can help it!
Sending you strength and best wishes on your journey.
LynnHi Lis
Was great to hear from an Aussie, but of course not in good circumstances that we are brought together.
You need to get yourself a good Oncologist to guide your dad and yourselves through the next phase of his journey.
Truly wish your dad all the best. Miracles do happen.
Best wishes to you and your family too as you ride the roller coaster.
Lynn
Ps. We lived in Mackay for 6 months after 1 1/2 years in Mt Isa. Greg got his 1st tattoo in Mackay.
(A mid life crisis thing!) Eimio Pub-Magical!Hi guys,
Not a carer sorry Lynn but I am in the uncurable category. Sometimes I just lock myself in my room and cry and then get back to what I was doing. Sometimes I just need to feel sorry for myself and then move on.
As for trials my oncologist told me the other day if you are medically unsuitable for one then most likely it will be the same for most.
Location is also an important factor sadly, I live in the greater west of sydney and my local hospital is running a keytruda trial I was lucky enough to qualify for but it filled up in 2 days. Another hospital about 20 mins away is running another trial I was offered to apply for.
My oncologist has been very clear though if this trial fails and I manage to get on the other one, if it doesn’t work I’m onto the chemo merry go round till its over.
Things are available sadly the stars need to align.
Good luck and try to enjoy your time together, it’s what my family is doing.
Hello Lis and a big welcome to you as well. Cyber space is so awesome as I feel you are just in the next city! can you tell us a little more about your Dad. I am happy to hear you are seeking other opinions since this CC is still so very rare. What form of treatment are they offering? You never know how strong you are until “strong” is the only choice you have!
Hi Lynn
We feel exactly the same. Living in Australia can be very isolating at times. When we ask about any kind of new drugs or trials we get shot down. We are now in the hunt for a 2nd and 3rd opinion (our surgeon is based is Brisbane and we adore her). We however want to make informed decisions now we are told dad is inoperable.
Feeling your pain.
sending you strength!
Thanks Lainy and Deb for your support. You definitely lifted my spirits. I am really quite fine-just was on a low point on the old emotional roller coaster when I wrote my 1st post.
It is an amazing website that you are all involved with- providing both emotional support and hope. Plus people can gain an insight into drugs and treatments that are being tried by others and appear to be working.
I am doing as Deb said-taking each day as it comes.
We have some great doctors in Australia but you guys appear to have Drs who specialise in Cholangiocarcinomas. Our Oncologists treat all the major organs so you are leading the way in America having Oncologists specialising in this area.
All the best to all!
Hello Lynn, and welcome to our group. Please don’t apologize for any negativity. You are confronted with a shocking, life altering medical situation and that is hard. We understand what you are going through and are here for you, so please, vent away whenever you need to.
I was in a very similar situation when my husband first became ill in early 2014. At first it was frightening to see his health deteriorate so quickly. Before diagnosis, he also bled out following an ERCP and almost didn’t pull through, then he had a stroke in the hospital. Then, after a diagnosis was made, it was just so incredibly sad. I don’t really have any special advice for you. I just tried to focus on the issue at hand and take each day and each medical issue one at a time, doing the best I could at that time. I refused to give up, tried to remain strong and positive for my husband, and tried to find the best doctors and treatments for him. We did find an amazing medical team and my husband was ultimately able to have a successful surgery (after an aborted first attempt by a different, less experienced surgeon). So far he is doing very well. It was heartbreaking to watch him go through all of this, and some days I went off for a drive and a good cry, but I tried to attend to all of my husband’s needs to make sure he felt loved and cared for. This is an incredibly difficult road, but we do get through it. Please let us know how we can support you.
Debbie
Dear Lynn, welcome to our remarkable family but so sorry you had to find us. It sounds like all the right steps are being taken and I want you to know others have had the same diagnosis and chemo has helped.
We don’t listen to statistics, we get a couple of opinions as different Docs see things differently and I know how you are feeling right now, like you were hit in the stomach with a base ball bat!
For me and Teddy we had humor on our side which got us through a lot. We made the most of our time and he would tell everyone that we were on our honeymoon. I would suggest talking to your own Doctor and see if he can give you a mild relaxant to help you for awhile. You never know how strong you are until “strong” is the only choice you have! You are not alone now so just call on us whenever you need us. Please keep us updated on Greg’s progress.Hi Everyone
A new member of the family trying to wade through a daunting, unfair, sad situation brought about by a rare and premature life stealing disease, without a cure.My husband Greg was diagnosed with Glomerulosclerosis (scarring of the kidneys) about 4 years ago which meant his kidneys were not functioning properly and throwing out a lot of protein from his body.
In Jan this year, he was diagnosed with a tumour blocking 1 of his bile ducts and a 2.8cm tumour was found in his liver. We were informed by a leading professor at a hospital in 1 of the capital cities that the tumour could be removed via a liver resection and a bile duct reconstruction done. Unfortunately and with great shock and disappointment on our behalf, when the operation had commenced it was discovered that the tumour was to close to a major blood vessel and that there was evidence that the cancer had spread to another small area in the liver and lymph nodes. So…..the operation basically could not go ahead and we were told there was no cure.
Greg has just started chemo to try to prevent the growth of the cancer.
We are normally very strong and positive people (Esp Greg) but every way we turn we seem to hit a brick wall. Any new drug like Keytruda we are told would be too hard on Greg’s kidneys.I would love to hear from other caregivers to see how you cope with watching a loved one become a shadow of their former selves. How do you come to terms with not being able to click your fingers and make them better again? We have come to terms with the situation not looking great but I find it so hard at times.
Sorry don’t mean to be negative but that’s where I am at the moment. Someone please inspire me!
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