Topic: hey out there

hi everyone
i've been watching this discussion for awhile, been a bit hard to dive on in, still don't want to accept this is happening
my sister has CC, diagnosed about 3 months ago, we re in Australia, she is in Sydney, I'm in Brisbane
we're having problems with her oncologist, she is not very hopeful, and is basically discussing things with Beka, with the attitude that Bek has a short life so she can't do this or that, it sounds to me like the oncologist has given up
we still want to fight this, my sister is only 33 last week,
i've been reading some info on Dr Jenkins, i need to know how i go about getting her there to see him, money is not an option for us - we will make it happen if we can get hime to see her
from what i'm reading from all your information the US seems to be the place to be at for this cancer
are there any other aussies on here and if so who are their doctors
the doctors are talking about 1 yr since diagnosos for my sister which i think means about 9 months now
we so don't want to accept this without a fight

cass

Re: hey out there

I'm so sorry to hear about your sister.  33 is way too young to have to fight this insidious disease.  When you start reading the family blogs, you will see there are others out there who are also very young.  My heart goes out to all of you.  Marions was kind enough to post Dr. Jenkins' info for me to give to my friend who is also battling cc.  She is in the process of having her records sent to him to see if there is anything he can do for her.  I would suggest that you call Julie and find out what the steps are to get your sister to him.  We have heard that he is a miracle worker.  Here is his info:
Dr. Roger Jenkins
Lahey Clinic
Burlington, Mass
(781) 744-2500
Julie Doyle
Administrator

There is a web site for the Lahey clinic (www.lahey.org) where you will find more info on Dr. Jenkins and other phone numbers.
Good Luck,
kap

3 (edited by marions Tue, 25 Jul 2006 13:08:46)

Re: hey out there

Cass
We had been told that my husband had 12 months to live with chemo - six months without chemo.  You have to exhaust all resources.  The greatest difficulty is in discoverying such resources.  We are forever indebted to the wonderful people who developed this website and to Peter, who posted his experience with CC and the name of Dr. Jenkins.  I will gladly forward the surgery report to anyone requesting it on this site, if it can be of any help in chosing a doctor to perform such a complicated operation.  There may very well be someone in  Australia who can help you.
Good luck
MarionS

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: hey out there

Cass,

You have much to hope for and your sister has a lot to live for, this website was developed because we wanted to hear about and find solutions to this problem.  We did not want to focus on the number of months Mark had left to live. 

I know there are many like you who watch this website and have been reluctant to participate in this forum.  We don't know everything about cholangiocarcinoma.  The fact is there aren't enough people who get this cancer for any Dr. or person to be a specialist on this disease, but we (everyone participating on this website) are the best weapon we've got and sharing information is the best way we have to find answers and hopefully a cure. 

Not accepting what your oncologist has to say as the final answer is smart, especially if this is the first opinion you have sought out.  Many of us have had 4th, 5th and 6th opinions and if we see something new or interesting on the horizon we'll seek a 7th. 

This has been a continual information gathering period for us and I suppose it will continue until we find something that will make a significant difference.  Hang in there. 

Stacie

Re: hey out there

Cass,
I very much agree with Stacie.  We have talked to several people who have been treating CC with different chemo combinations, some of them as long as 17 years.  Don't give up hope.
MarionS

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: hey out there

hi all
I was pleased to see that some people have been treated as long as 17 years , gives me some hope for the future.

We have just reqested a second opinion for Jon , from Prof Lodge in leeds England and feel more positive just by taking that initiative   .
It was this website that gave us the information needed ,and the confidence to request this .
I, as a wife to  someone with a CC diagnosis  have found this site to be a great source of infomation and support

Alison

Re: hey out there

Alison

I wish you well in your consulatation with Prof Lodge, he is a great guy and really easy to get on with, and he's a brilliant surgeon.  I believe that resection is probably the only route to cure, from what I remember reading from Jon's posts his tumour is at a fairly early stage so I would hope for both of you that is is resectable.

Regarding chemo, I'd just mention that Gemcitabine+Cisplatin is recognised as being more effective that Gemcitabine alone (this is also shown by early results from ABC02).  And you don't need to get these via a trial, my oncologist put me on Gemcitabine+Carboplatin as the first-line chemo regime (he says that carboplatin is a 2nd generation cisplatin).  And my latest scan shows slight shrinkage of my Lymph Nodes (metastatic disease - my tumour, which Prof Lodge removed, was very advanced and he was unable to get to all of my Lymph Nodes).

Anyway good luck

Geoff

Re: hey out there

Hi I have decided to share my experience as a new member from New Zealand. My husband ( 48 ) has CC. with initial symptoms presenting as slight abdominal pain in early May. After a visit to our GP and suggestions of gallstones a ultrasound showed liver lesions. He had a CT scan and also a colonoscopy to establish a diagnosis of primary liver lesions. A week delay to see the liver specialist led to a sudden onset of Jaundice , nausea and weightloss. We saw the specialist late one night and my husband was admitted the next day, an external stent was initially put in , then when infections had been contolled a double internal stent was successfully implanted. He had a nightmare stay in hospital for 30 days . No biopsy was taken as it was deemed unecessary and we were referred to the pallitive care team . Our specialist said no go to surgery because of the position of the primary tumour .The onocologist said treatment would add weeks onto his life expectancy. My husband saw his father die of lung cancer and throughout this we have made it clear that it is his choice which path he follows, he has so far decided that chemo is not for him and I respect his wishes and will continue to care for him at home . I read the experiences of people in other countries and wonder if we too had been in the states ,would the outcome of our battle been different. I don't know how long we will have to continue with this struggle but I know Grant made the best choice for him given the limited options available in New Zealand . He is too much of a lover of life to want a half life in hospitals.

9 (edited by ukmember Mon, 28 Aug 2006 05:54:28)

Re: hey out there

I sympathise with you in your position. My husband was diagnosed on Nov 5th 2005 and died May 2nd 2006. On Nov 21st they operated to do a resection but found that the cancer had spread to parts of the body not visible with diagnostic tests. One month later my husband came home. He also declined chemo, believing that at his age (66) it would weaken his total immune system and he would be no better off in the long run. We decided on other more holistic approaches but it was not enough.

Since then I have been visiting this site regularly. I follow the discussions which are mostly about the various chemotherapies that are being used  to try to delay the onset on the disease. There is no cure. Resection with clear margins seems to be the best option but is not available to everyone. For everyone else chemo can postpone the onset, - a decision that has to be balenced against the quality of life during the process of treatment which has inevitable painful/fatiguing side effects.

Reading the discussions here, I had started to think that perhaps my husband should have at least started on the chemo, since it would have probably extended his life. However I have been reading the blogs over the last week and I have shifted my opinion somewhat. It seems to me that once people take the medical route, it is often like a row of dominoes as one treatment causes another problem, more intervention and more pain and discomfort. The initial treatment seems to work but there seems to be a tipping point where the disadvantages start to outweigh the advantages. M's experience of hospital made him refuse to even consider being readmitted to hospital. In the end he had a gentle death.  (see In remembrance) We, his family were in control and able to do what he wanted rather than being in the hands of the medics with ever more piecemeal treatments to deal with the consequnces of the previous treatments.

I do wonder if the mantra of 'going on fighting' when the battle is really lost is best for cc sufferers. When treatments are no longer working, pain fatigue and discomfort become everyday experience and other serious complaints are presenting one after another, is it the best thing to accept the inevitable and seek a 'good death'. For myself I am certain that it's what I would want (although I know that there are people for whom however uncomfortable, life  is everything)

My husband was treated by an Indian nurse whose view was the death is part of life and the move between the two should be to help dying accept and move on, not to go on fighting with increasingly intrusive and painful treatments - often unproven.

What I now think is that
M should have at least started with gemcitabane which is usually well tolerated. If the consequences were unacceptable to him then he could have stopped it when he wanted.
We should have started earlier with our holistic doctor, since she was very busy and we had to wait a long time for an appointment.
And finally to stop trying to 'save' him with new treatments, pills and potions.  What he wanted from me was to talk to him, sit with him, do relaxation together and gentle exercise, massage his body, read to him, light scented candles and play music. Play backgammon and  chess with him , get friends to visit, look at the family photos and videos, do everything to make those last days precious and enjoyable.

There are far more treatments available in the US (we are in the UK) but all of them with side effects.  I feel that reading the blogs, they did extend life and the families were able to have weekends away together which was a great outcome but it seemed to me that a time came when the issue became one of acceptance and making the life of the patient easier in his final days. 

I would urge you to read the blogs for a fuller picture of the disease and its development.

Re: hey out there

Hi UKMember
I've posted as a new member - really looking for confirmation of what I have just read in your post.  It has been really helpful.  Sometimes, I think that, in our pain, we grasp at straws.  I'm too tired to make much sense now (Mum's diagnosis today), but - thanks.
Janet (West of Scotland)

11 (edited by JeffG Wed, 18 Apr 2007 07:38:06)

Re: hey out there

Cass..... I am very sorry to hear of your sisters's diagnosis.  You'll inherit a world of information in the days to come.  Bottom line there is no known cure but many types of treatments.  We are all individuals on our own personal journey hoping to find something that works better or eventually hit on something that will help many.  It's like going fishing and waiting for that bobber to go down.  Some days it happens and others it don't.  Sometimes the bobber just swirls around and bounces a little giving us just a little bit more hope that  we'll catch that fish(cure).  Even if it's a small fish and only satisfies us for a while.  One day we'll catch the big one.  If I don't get the big one at least I had the enjoyment of fishing at a beautiful lake. knowing I tried means to me I contributed so that one day someone else will catch the big one. I would love to share my catch with all.  Many options Cass and many opinions by a lot of individuals .  You'll have to weigh and decide with your Sister to determine which road to take.  Not all is known by us here on this site but we can provide you with some pretty solid advice of want has and hasn't worked for us as individuals.  We have a common illness but we are all individuals with different outcomes.  8 Years and I'm still going to bed with my wife each night, I'm still supporting my Son who is going through recovery, I'm still driving him and I to appointments, I'm still playing with my grand children, I may not be working full time but have become domesticated around the house.  I guess I'm saying most of the time I'm useful and when enjoying what I do I hardly notice the pain.  Again you and your sister will have to decide and advocate accordingly.  Yes, There will probally be a day sooner or later; no time table set for me.  It's when the lord comes a calling.  Even the Lord says he can help only those who are willing to help themsevles.  To close my rambling,  This site is here for you whether it's support, advice, what worked for us or not, or to just simply vent.  I really wish you and your sister the best as you turn on to this bumpy road that could or may not come back on the smooth highway. 
God Bless You Both!
Jeff G.
P.S. She is 33 Years Young with lots of strenght going for her.  If not to advance in my opinion give it a few whirls and definitely get a second opinion.  Also a second opinion for a pathologist from having a tissue biopsy to very fy low grade vs high grade cc and HCC VS Adencarcinoma can make abig difference on treatment approach.  We have proven one thing by sharing on this site is the Doctor can not predict your length of survivabilty.  I was told 6 months -1 year a few times already but they haven't taken my drivers license away yet.  I'm still going down the the road in my old beat up chevy; I might out last my truck for that matter.

Take it to the Limit,One More Time! (Eagles)

Re: hey out there

Jeff,
  What is the difference between HCC and Adenocarcinoma as far as the biopsy. I don't understand all the different classifications etc. They have never even given us a stage for my husband but I guess I don't really care. As lonfgas he's doing well. They said on his pathology report that it was adenocarcinoma with non-specific origin. What does that mean to you? Thanks Jeff and continue to be well! You are in my prayers!  Mary

13 (edited by JeffG Wed, 18 Apr 2007 10:12:55)

Re: hey out there

Mary,  From what I understand is that althought cholangiocarcinoma and adenocarcinomon is of the same family of the carcinomas, cholangio is when the disease begins from within the organs and adeno is when is mets from other location and usually begins on the outside of an organ, which I think can explain why some may do better than others as far as survivabulity.  It takes a real good pathologist to determine the difference and then they can make a mistake and have to double check as under micropscope the cell differiation is so much alike.  I understand the treatment is basically the same if advanced but eventually adeno works it way enternally.  I actually researched and found that out on a site yesterday.  I just typed cholangiocarcinoma vs adenocarcinoma and got a few hits explaining the difference. Either can be intraheptic or extraheptic and lower grade vs higher of either can be determined by a good pathology report.  The site I hit actually show CT Scans and MRIs of the difference with views of cells showing the different makeup.  I will try and find it again and bookmark it to share.  If anyone has seen or knows of this please jump in.
From what I also understand is if it is found earlier enough and is more on the adeno side and is resected your long term surviability is more likely.  I only understand to a point as it is all considered systemic.  I'll try and find site again and share it with all.  I wish you and your husband the best.
Jeff G.
P.S.  Thanks for the wish and the same for your Husband and you of course.  Beautiful day out today; got to plant some more flowers.  Looking primarily for colorful perenials that return every year.
P.S. #2  Baylor College University of Texas is were I got a lot of the inormation www.baylor.edu  article of the month.

Take it to the Limit,One More Time! (Eagles)