jules
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jon,
please do not be put off seeking second opinions, most oncs are quite used to this when patients are faced with a cancer diagnosis. My Dad (Geoff) sought a second opinion and we were referred to Peter Lodge, we live on the south coast, we have found that you do have to travel to find the right people. Also, prof cunningham is an oncologist and not really able to advise concerning surgical options as it is not his field – how could he be offended?
good luck, Jules
sometimes it takes a while for everything to settle down after the surgery – if your brother has had surgery then he has real hope, surgery can be curative for about 50% of people undergoing a resection, you could ask whether the surgeon was able to get good clear margins, you can’t be sure that the jaundice means that some cancer remains and it is too early for cancer to come back. chemo will be your insurance, as long as the incision is healing okay and your brother is mobile and able to eat reasonably then he should be able to start chemo soon, i would advise you to start looking into chemo options now so you are informed for when you speak to the oncologist, there is an excellent chemo worksheet on this site and different people on this site are on different combinations with varying degrees of success.
i am sorry that you are facing this, your brother is so young, you have come to the right place, this site is a great source of info and support.
Jules
hi, I understand your desperation, my Dad is battling this beast too.
You mention that your brother had surgery, did he have a liver resection? or was it a bypass? how long ago was the surgery? – it takes a while for things to settle down post op.. is your brothers bilirubin level raised? has your brother had any chemo or radiation?
sorry for all the questions but it is difficult to advise without some more info really.. you must not give up hope. There are treatments available to fight this beast its just a question of finding an onc who is a bit more dynamic and progressive and willing to give your brother some of the newer breakthrough treatments, so many people will just tell you that if you have cc it is hopeless, that there has not been enough research into the disease – my dad had a resection and now has a recurrance, he is currently on chemo and we have options lined up if this does not work for us. Cancer vaccines are showing real promise (see my posting under clinical trials). You will come across people on this site and elsewhere who have held the disease stable on chemo, managing it like a chronic disease (like diabetes or heart disease) my Dad is taking gemcitabine and carboplatin which is well tolerated. The disease can be held stable for many months and even years, reasearch is moving fast at the moment, new treatments are coming along all the time.
Take care, keep strong, Jules
Randi
I am so very sorry to hear about your Dad. You were a wonderful advocate for him and it must be a great comfort that you were able to bring him home and fulfill his wishes.
I am shocked to hear that you now have a health scare, I hear this so frequently from those supporting and caring for those inflicted with a life threatening disease, it really does take its toll. I do not understand the tumor markers enough to advise you, I can only hope that this is a false alarm – that somehow your body is reacting to all the emotional stress.
My thoughts are with you, please keep in touch
with kind regards, Jules
just to add to my dad’s posting above – I have been reading alot about metal stents coated with chemotheraputic agents including carboplatin as being effective, worth considering for anyone considering a stent I would have thought….
Jules
marion,
this wk my dad completes his fourth cycle of chemo and then he will be having a scan..
my dad has gained weight and apart from a bit of fatigue due to low hb he is active. He now has a hernia belt which has eased the abdominal discomfort caused by the hernia, he also has a good appetite so we are very encouraged.
I don’t know how long he will continue on this chemo – we have options if it isn’t working – to take place in a early stage trial, we are also meeting with somebody else this week in london to discuss newer treatments that could extend to cholangio – that my dad could try.
at the moment the pace of cancer reasearch is moving quickly, i believe that we just need to hold things stable and these treatments will be available to my dad. In the meantime we are enjoying the summer together and just so happy that we are able to do so, my dad has outlived all the gloomy predictions from drs so far – long may it continue!
Jules
jon,
my dad was offered to take part in the abc02 trial – he drew the gemcis combo, we then found prof lodge and so my dad dropped out of the trial before he started.
my dad is currently on gemcitabine and carboplatin which he is tolerating really well. carboplatin is a 3rd generation platinum drug so better tolerated then cisplatin.
The best thing to do with regard to getting second opinions is to send the scans and an up to date report to the consultant concerned. Prof Lodge will read scans on disc. we keep copies of my dad’s scans and notes with us – this is probably the most reliable way to do it. I just send copies wherever needed.
Good luck – any further queries feel free to ask.
Jules
jon,
I am sorry that you are having to face this disease however I wanted to let you know that there is hope and there are weapons available to fight it. Surgery is the best option and can be curative. You should get some surgiical opinions, you need to consult someone with alot of experience, this is difficult surgery. We are in the UK, my dad was diagnosed with cc last july and had a resection october 05. His surgeon is the best in the UK (we consulted alot of people abroad and here at home everyone spoke highly of Prof Peter Lodge). Every Dr that we have consulted has said something different – you just need to search out the ones that are willing to help. Prof Lodge’s details on on this site (under experiences – i think it was one of the first postings).
Where are you being treated? – are you having anything in addition to the gemcitabine?
take care, Jules
txgal
hi – we have chated on john hopkins i think? – i know that ukmember who checks into this site regulary has info on cachexia..
i do not know very much about it – sorry, hopefully ukmember will reply to you. Hows it going?
jules
sandra,
i am sorry to hear about your husband. However it sounds as though it is a great comfort to you that you were able to have 5 years together after diagnosis in which your husband was able to enjoy a reasonable quality of life.
We had a similar experience with surgery and it would appear that the story is all too common, hopefully through reading the experiences on this site patients will be empowered to seek second (and more) opinions. It must have been a lonely experience for you at the time with your husband suffering from such a rare cancer, this site has been a lifeline for me. Nobody else really understands.
I am sorry for your loss and I thank you for sharing your story, my dad has been diagnosed with a recurrance (in 1 lung and lymph nodes following a resection) and reading your story has given hope that he can live with this for some time yet.
Jules
marion,
we had an identical experience to you. My dad had 1 failed ‘attempted’ liver resection in august 05. we were told that there was no way the tumor could be removed as it was too close to a major artery. We sought a second opinion and we were referred to prof peter lodge here in the UK who removed the tumor – “tumor peeled away easily from artery” – the tumor should have been removed first time round, the first surgeon told us he had the expertise.
Unfortuantly my dad has suffered a recurrance 6 months post op and is now on chemo, however he is doing well. It was the tumor in the liver that was causing all the horrible symptoms – now that that is gone he is able to lead a almost normal life.
We also have noticed that there is alot of professional rivalry between drs – often surfacing in ways which is detrimental for the patient. (one oncologist we saw was perticulary scathing of the effectiveness of the surgery).
we admire peter lodge so much and we are so grateful to him. Out of all the oncs/surgeons we have met along the way he has been the only one who has been willing to put himself out and work hard to help us.
As for the recurrance – we live a long way from where peter lodge is based so a dr down here diagnosed the recurrance. we felt as though he was smug about it – (one of the pessimists). My dad is gaining weight and doing well..i am starting to wonder if a recurrance has been misdiagnosed (we are looking into it now).
I can understand how you feel about dr jenkins, hopefully you can get him to do the follow up with your husband. (beware of the professional rivalry).
As for my dad – if it is a recurrance i am trying to line up some alternatives to chemo – we are going to meet with someone concerning cancer vaccines next wk. the tools are available now to manage cancer as a chronic illness – something that people can live with for yrs. We just have to convince the people researching and about to start the trials that cholangio patients deserve a look in too.
wishing your husband all the best with his recovery,
jules
that is great news, lets hope the beast never returns. I am sorry that your husband has had to suffer with this. Where were the mets? – on his liver only?
jules
melissa,
i am very sorry to hear about your brother. There is hope out there, this is hard i know and the docs and internet often paints a gloomy picture – you must see beyond that and be reassured that there are long term survivors of this disease.
my dad was diagnosed a year ago now and initially we were told he wouldn’t see christmas..then it was easter.. and so on. He is still here and doing really well. He is putting on weight and is active and leading very nearly a normal life other then getting a little tired occ from the chemo.
The best advice that i can give you and i am sure that everyone else on this site will reiterate is to keep getting second,third, fourth opinions from doctors. My dad has had 2 operations – the first surgeon said the tumor could not be removed – we then found a brilliant surgeon here in the UK who removed all of the cancer. Surgery is the best option if your brother is a suitable candidate.
If surgery is not an option then chemo may well shrink the tumor so it could be removed – if not there are treatments available that are holding patients stable for many months/years. Currently great strides are being made in developing cancer vaccines and the trials for pancreatic cancer using vaccines are underway. Pancreatic cancer is treated in much the same way as bilary cancer, the vaccines have allowed patients to live for many years. I am currently researching into this and I will keep everybody on this site posted. I am hoping to get my dad into a vaccine trial possible at a later date.
do not lose hope,
jules
kate
your experience in greece funnily enough does not sound that disimilar to the uk. i had to stay in hospital with my dad last summer (when he was nhs) despite nursing staff on duty none of them were able or willing to care for my dad properly. (different story when he went into a bupa hospital).
I am glad that your mum is doing ok – and it does sound so far as if she is.. there are just a couple of issues that you may want to ask the doctors about:
– did they get clear margins? – oncologists reckon you should have at least 5mm – some docs dispute this (this will be relevant when considering chemo options later)
– as for chemo post op, most people will tell you unless there is no visible cancer on a ct the benefits of chemo post op for cholangio pts is unproven, it really does appear to be a personal choice.. my dad did not have chemo – he has had a recurrance 6 months post op – maybe chemo would have helped..
– chemo is not the only option – (see my posting under clinical trials) – immunotherapy is in the media alot at the moment..(I am currently researching this and trying to find a clinical trial)
you have alot to think about – for now you just need to get your mum over the op. It takes time, it is major surgery, we found it very slow to begin with – but gradually she will shed all the tubes one by one and become more mobile, with mobility the bowels and appetite issues usually resolve. My dad had an epidural which worked very well for pain. The abdominal discomfort continued for quite a while after the op, mainly due to scar tissue and a hernia he suffered (common after abdo surgery of this type) – your mum should have physio input and help to get moving safely.
The only other thing i didn’t quite understand from your posting is why your mum still has a stent in situ. If the tumor has been removed then surely there is no need for a stent (stent holds open duct when tumor blocks it) my dad’s stent was removed during the surgery. Maybe you should query this with the docs?
As for diet – yes avoid animal fat – bile breaks down fat, need to go easy on the liver, also make sure your mum takes plenty of fluid.
hope this helps, any more questions please feel free to ask.
Jules
cooper
I am so sorry to hear about your mum. she sounds like a very brave woman to fly to germany like she did. The heating up treatment is called systemic hypothermia (heating the body to 40 degrees to enhance chemo effectiveness). I am sorry that it did not help your mum.
my thoughts are with you
– jules
