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Thanks, Janet. We are unable to get away from work untill about May, as we run a 3 man business & we are 2 of them. But I will suggest to Bill that we get a second opinion through Randwick. For the time being we will stay with Bill’s oncologist who is just 20 minutes away from our work. For convenience sake, we will stay with him until we get that second opinion.
Hope you are feeling better yourself. Thank you for the advice.
regards
RoslynRoslyn,I was about to suggest Prince of Wales(Randwick) or Royal Prince Alfred in Sydney,both have amazing liver units ……
Lainy,am always about but have not travelled well the last couple of months JanetHi Janet,
Bill’s doctor has not mentioned a stent. I will look this up for more info.Perhaps he doesn’t need one yet. His cc was found before he had symptoms although he already had 12 tumours spread throughout the liver-some as large as 7.5cm. The doctor says he has a primary form of liver cancer, called cholangiocarcinoma.It is good to know that other Australian oncologists are more familiar with this disease. We live in Brisbane & are going through a large private hospital that has a good reputation. We have family in Sydney so may try a hospital there. My grandniece has been treated through Randwick Hospital for Leukemia for the last 5 months, since she was 9months old. We have visited the hospital with her & may see if there is an adult version for my husband.We are very pleased with the treatments she has been receiving & the support of the staff.
Thank you for caring & sharing, Janet. It really does help to interact with others who know what you are going through.
Regards
RoslynDutchess, welcome and I wish we didn’t have to meet this way. I wouldn’t be too quick to rule out surgery (and maybe other treatments like chemo, radiation as well). I had cc in bile ducts and left half of liver. I wasn’t a red hot candidate for surgery (age+cardiac issues). In any case, Dr. T. Kato operated on me at NY Presbyterian in NYC 4/8/09 and I’m still here and clean so far. Dr. Kato has a reputation for operating on patients considered “inoperable” by others. If you’re interested, I can point you to contact info.
Good luck and you don’t have to feel alone. This group is filled with a load of truly wonderful people. God Bless.
Hi Janet, I knew you would pop in, how the heck are you??? Good to see you.
Roselyn, Janet has already walked the walk in Australia and I just knew she would come aboard for you. Good luck with what ever you decide to do.Hi Roslyn,
I am in NSW and I dont think cholangiocarcinoma is rarer here in Australia than other Western countries.Are you in a remote part of QLD?It might be good to have a 2nd opinion but surely closer than Melbourne.If you have friends or family in Sydney or Melbourne that would make it more doable.
It is great that you have a good rapport with your oncologist but I wondered about the nexavar as a 1st choice of treatment as it is usually for the hepatocellular cancer.
Has your husband had a stent inserted?
We have had quite a few members from around this country and I myself have cared for a few in the hospital I work in. JanetHi Marion,
Thank you for your warm welcome & all the helpful advice.
Just visiting this site makes me feel less alone.
regards
Roslyn ( Duchess)Hi Kim,
Thank you for responding to my post. It is reassuring to know that there are oncologists in Australia who have treated CC before. My husband’s oncologist, although a warm & caring physician, has never treated CC before & that makes us a little aprehensive. If we ask if a symptom is “normal” his response is usually” I don’t know what Nornal for cc is as it is so rare in Australia.” We will consider getting a second opinion from the Cancer institute in Melbourne now. Bill has already lost 12 kg. He seems to tolerate Nexavar, a chemo drug, quite well but has to take pain killers(Oxycontin) & anti-nausea drugs that seem to do little. Lately he has been experiencing pain in his joints also. We next see his oncologist on 24th February, so I will let you know how he is going after that and more blood tests & scans.
I do hope your dad is coping Ok & not suffering. He is blessed to have a daughter like you who cares so much. Please keep us updated on his progress.
Regards
RoslynHi Roslyn
I am in Victoria – australia and there are a few good oncologists at the Peter McCallum Cancer Inst in Melb who have had experience dealing with CC.
My Dad was diagnosed in March, 10. Was told that he was stage IV, inoperable and that chemo would only be palliative. He tried the chemo- but couldn’t cope with the side effects. My Dad was 90kg a year ago and is down to 60ks (he’s 6’3″), he has developed ascites and has to have a stomach tap every 2 weeks, his pain is increasing quite a lot of late and keeping on top of that is his biggest problem at the moment.
I don’t post a lot on here – but love reading the stories. Gives me an idea of where we are heading with this.
Take care
KimHello dutchess (love that name) You already have received a warm welcome from many and I would like to join in also. I am not a physician however, if you don’t mind, I would like to share a few thoughts with you.
When prescribed for this cancer Nexavar, which is an oral multiple kinase inhibitor generally is administered in combination with other drugs. Our website offers a list of clinical trials and some include Nexavar (Sorafenib.) You might want to take a look at it. It can be found: top bar, “cholangiocarcinoma”, scroll down to: clinical trials. Has your physician explained to you as to why Nexavar is being used for the treatment of Bill? Also I have learned that the liver disease can be very painful therefore, I would make sure to have other medications on hand. Watch out for constipation, a likely side effect of pain medication. You might want to make sure for Bill to have regular bowel movements and often times stool softeners can be of real help.
Although, our foundation is represented at all major gastrointestinal conferences to this date we have not been able to meet up personally. A few of us though have had the opportunity to meet some in private and some when meeting up at a conference. Should ever be one in Australia I will be sure to notify you.
I am in total agreement with the others in that you need to inform yourself about this cancer. Our web site offers a tremendous amount of information. Please, take a look and please, ask any questions coming to mind. We are all in this together.
All my best wishes,
MarionThanks for all the support, guys. Bill & I live in Queensland, Australia. That’s right ,the state that has been hard hit by floods & cyclones in the past few weeks.We have not been affected though.
Hi Roslyn
I too am new to the site but have been through some of the things your husband is going through with my daughter. She too was sick and in pain at first. They had her on so many different types of pain medications and pills for her nausea. I must say that once they took her off of the pain medications and put her on morphine she was a whole different person. She was more like her old self. If your husband can handle morphine I would really recomend it for his pain. My daughter found that once the pain was under control she did not need as many medications for the nausea. Hope things go well for you and your husband. This site has really helped me already.
With Gods love.
Sue (Dani’s Mom)Hi Roslyn,
Welcome to the site. Sorry that you had to find us all and I’m sorry to hear about your husband Bill. But I am glad that you have joined us all here as you will get a load of support and help from us all. If we can help in any way with answering any questions that you have then please ask away and we will all do what we can to help answer them.
As Lainy has said to you, Janet is from Australia and hopefully she will be along soon to share her experiences and may be able to help with where to go to get a second opinion or see a doctor or onc that is experienced in seeing patients with CC. In the meantime this thread maye be of use to you.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
It was created by the members here who shared their experiences with doctors and treatment centres. It contains mainly centres in the US but there might be some that are in Australia.
What treatment has your husbands oncologist started Bill on if any yet and did the onc mention the Gemcitibine/Cisplating combination that Lainy talks of? As to the pain and nausea, there are a wide variety of medications that can help with this. My dad went through a variety of types and combinations of anti nausea meds, is Bill taking anything for the nausea?
I do hope that you will keep coming back here and keep us updated on how Bill is doing.
My best wishes to you and Bill,
Gavin
Dear Duchess, welcome to our wonderful family and so sorry you had to find us.
I am wondering if there is an Oncologist even a couple of hours from you where you could get a second opinion . Our Janet is from Australia and hopefully she will see your post and chime in. We believe in 2nd or more opinions until you feel satisfied. One of the more popular chemo cocktails here seems to be Gemzar and Cisplatin (sp). My husband had been on Morphine for pain starting out very low and increasing as needed. For nausea there are many drugs and you need to find the one that works best for your husband. The bottom line is to keep the patient comfortable. Where are you in Australia, I know someone else will come forward.
Please keep us posted on your husband. Its midnight here but I am sure you will be getting more answers in the morning.HI,
My husband was diagnosed with CC in November 2010. His medical oncologist has never treated CC before, as it is extremely rare in Australia & takes advice from international oncologists to know how to treat this. This is not reassuring to us!!!He has prescribed Nexavar & oxycontin for the pain. Before taking these medications my husband, Bill, never had pain or nausea but now they seem to be his constant companion. Bill has approx 12 tumours throughout his liver that are upto 7.5cm long. We have been told that this is inopperable & that a transplant is not an option for him even though I have offered part of my liver. I am perfectly healthy & we are both still in our 50s. Bill’s condition was only diagnosed after a routine blood test indicated a liver abnormality & he had a biopsy.I have found your websight invaluable as a source of information about CC & as a means of connecting with other sufferers & their families.Thank you for providing this valuable resource. There does not seem to be a similar resource available in Australia.
Do you guys get together for conferences or information days or similar? Bill & I would be keen to travel to the USA to take part, if we had enough prior notice. We run our own small business together & would need to arrange for extra staff during our absence, as we do when ever we have a holiday. We are looking forward to our first copy of your newsletter as this sort of info may be offered.
Regards
Roslyn (the duchess is my nickname)
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