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  • in reply to: Genetics – The elephant in the room??? #22495


    I think you are onto something here. My Dad’s uncle died from ‘liver’ cancer. That was some time ago, and the circumstances are vague, I’m guessing it was cc. (My Dad died from cc 23/9/2007)

    I went to my gp about this and I was referred to a genetic consultant who was dismissive. I do not feel reassured. So little is known about this disease how can they be so sure?

    I did come across a clinical trial in Switzerland asking for blood relatives of cc patients to trial some type of screening – If I recall correctly it involved taking samples of the cells lining the bile duct for testing – I think it was called brush cytology – or something like that.. I will try to dig it out.

    surely if we are wanting to make some progress towards a cure/early diagnosis then this needs to be taken seriously. Thankyou for your informative postings on this subject.

    in reply to: Dendritic cell vaccine therapy #14802

    Dear Sara,

    I don’t check in on this site very often now. Mainly because it just hurts too much.

    I just wanted to respond to you. I feel very emotional having just read your posting. It is very likely that my Dad is the donor. I feel very comforted knowing that you are the recipient and I know that my Dad would feel the same way. My Dad gained strength from this online community and it helped him to not feel alone in his fight. If he could do anything to help gain insight into this disease and progress towards a cure then I know that he would have wanted to be in there.

    Thankyou for sharing this information and I want you to know that I am thinking of you (and all my other friends on this site). Lets beat this beast.

    love to you all,

    in reply to: hope on the horizon #19011

    thankyou for your good wishes, yes Karen we did try alot of treatments for my Dad. you will find alot of info under the dc therapy thread in this research section, my Dad find chemo harsh and did not tolerate it well – harnessing the cancer fighting properties of our natural immune systems seems logical to me. DC therapy works on the same lines too..

    Jeff, thanks for your message, yes we all need hope, I will keep an eye out too. Here is the reply from dr Cui. (Standard response due to demand for info):

    Dear cancer patients and family members and friends,

    Thank you very much for your inquires about our research project on a new cancer therapeutic concept based on many years of research on cancer-resistant mice and cancer-resistant humans. Recent media events were sparked by my recent presentation at a conference at University of Cambridge, UK. (video: http://richardjschueler.com/wp-gallery2.php?g2_itemId=56888) In this talk, I briefly described our work on how we made the transition from laboratory research to a new therapeutic concept for human cancer treatment. However, since then, I have been inundated with countless inquiries about this new experimental cancer therapy. I simply can’t respond to all these inquiries specifically. I am writing this general response letter and hope that you will get some idea about the planned clinical trials with a starting time aimed for next June of 2008.

    This treatment involves how to identify cancer-resistant healthy human donors, how to collect a specific set of white blood cells, particularly granulocytes, from human donors, how to infuse cancer patients with these collected granulocytes and how to evaluate the response of cancer patients to this treatment. This treatment does not involve any new compound or drug that can be shipped around. It depends on basically something similar to blood transfusion that requires both patients and donors to be at same facility, or in this case, at Wake Forest University Medical Center here in Winston-Salem, North Carolina.

    We planned two phase II clinical trials. In the first trial with 22 patients (already approved by IRB and FDA), our goal is to randomly select a group appropriate cancer patients, based on criteria set by our physician team, to test the dose of granulocytes they can tolerate. The medical term for this test is called “dose escalation”. Not all cancer patients will meet the criteria for this trial. For example, late stage cancer patients who are not ambulatory or who don’t have more than four months of life expectancy will not be considered for this experimental therapy. The effect of this new therapy on malignant diseases will not be a primary goal of observation. If the trial shows that the patients can indeed tolerate our proposed doses of granulocytes, then we are ready to move into the second planned trial. The second trial will test what kind of cancer will have beneficial responses to this therapy. We will select several patients from different types of cancers. By the end of these two trials, we should have a very good idea about if this experimental treatment is a good one or not.

    Before next June when the first trial begin, our Wake Forest team has to establish a donor registry consisted of about 100 local volunteer eligible donors from approximately several hundreds of initial healthy willing participants. These donors will be on call when they are needed for granulocyte donation. These donors have to pass the anticancer activity test and infectious disease test before they can become eligible donors. The current cost estimate for each patient is about $50K to $100K and the whole trial will take $2M to $3M in US dollars. This estimate is to cover expenses for the recruitment of donors, testing donors for infectious status and anticancer activities, collection of granulocytes from donors, transfusion procedures, standard disease monitoring procedures before and after treatment and standard patient care. The treatment is an out-patient procedure and does not require hospitalization. Patients are expected to be responsible for their own transportation and accommodation during their treatment period. We are actively trying to raise funding for this trial in hope that all or a portion of cancer patients in this trial can be treated based on clinical and scientific criteria, rather than on their ability to pay. However, such a hope will have to depend on how successful our fund-raising will be.

    Early next year, Wake Forest University will make official announcement about these clinical trials. We will create a website specifically for these trials so that enrollment of patients and potential donors can be done electronically. In this way, patients who are not local would have equal opportunity to be considered for entering the trials.

    Thank you.

    Zheng Cui, MD, PhD

    Associate Professor

    Section of Tumor Biology

    Department of Pathology

    Wake Forest University School of Medicine

    2103 Gray Building

    Medical Center Boulevard

    Winston-Salem, North Carolina 27157

    Phone: 336-716-6185

    Fax: 336-716-6757

    Email: zhengcui@wfubmc.edu

    in reply to: Caroline Stoufer #18298

    To Caroline’s family,

    My sincere condolences for your loss, Caroline was one of the first people with whom I connected with when I first found this website, I always admired her strength, courage and ability to appreciate each day throughout her long battle with this disease. I am so very sad to hear that she has passed away.


    in reply to: Happy Birthday Mark! #18215

    Dear Stacie, Rick, Marianne and family,

    I just wanted to say that I think this looks amazing. I love the home page, I think the improved format is more uplifting, welcoming and clear in its mission. Thankyou for all your hard work. Thinking of you all on Mark’s birthday,


    in reply to: Using the forum and family members #17959

    hi kris

    whenever I used the site I was always very careful to appear strong and in control, I was very aware that my Dad would not have been able to cope with seeing/reading that I was upset. Predominately I used the site for research purposes, since my Dad has died I have still felt drawn to the site for support (and been far more open) – however more recently I have been put off from doing this (this is a side issue).

    Getting back to your question, I would say that I totally understand that you need somewhere you can vent, I did often wonder if my Dad felt curtailed in that respect by me being on here too. It’s a difficult situation and I suppose it depends alot on individual relationships however I would imagine that most people in this situation ‘hold back’ to a degree. Are there any cancer support groups/carers groups locally that Hans would be willing to try? I know that it is not easy with men and emotions, my Dad kept everything in and I remember wondering how on earth he coped with it, he was so brave although I often wished he had an outlet.

    I hope that this has helped give you an insight into the problem, take care, Jules

    in reply to: Dr. Jerome Canady #17772

    Tom and Ron

    By all means conduct research – I certainly did when I was considering who to go to to help my father, however I would say that it is advisable to only use reliable sources when researching – eg medical journals that the dr may have contributed to (ask him if he has co-authored any articles), I also talked to other Drs whose opinion I respected (eg when we went abroad for treatment I consulted with the head of the immunotherapy unit here at St Georges Hospital, London). Personally, I would not consider media driven reports reliable authority.

    I hope this helps you in your decision, very best wishes,

    in reply to: Dr. Jerome Canady #17768

    Just to clarify my previous posting:

    – I don’t think that it is perticulary helpful to publically vilify Dr Canady (posting links to media reports infering that his professional integrity is in question amount to this).

    – I am thinking perticulary of all the patients and carers searching this site for hope. I don’t see that this tittle tattle has a place on this website (I am referring not just to this thread but also to other postings/threads referring to Dr Canady)

    – I post on this board not as a lawyer, I post as a daughter of a cc sufferer and I know exactly how it feels to be given a lifeline – hope in the battle against this hideous disease. I wouldn’t knock that.

    – I support informed choice not scandel and scare mongering.


    in reply to: Dr. Jerome Canady #17767

    I think that it is time to stop all of this. I think we have to be clear about the aims of this site – we all want to raise the profile of cc and to work towards a cure. (Please think of the patients on this site relying on us to carry this forward). We should not be put off from sharing hopeful avenues however we should be careful about the context in how we do this. (Please see some of my dad’s postings re Prof Lodge/surgery – we were clear to warn of the risks involved with surgery). Nobody is a miracle worker. This is a difficult disease, however Dr Canady is able to offer hope to many patients.

    As for the privileges system issue – correct me if I am wrong, but is this not a system that is clearly open to abuse and exploitation? we have all come across professional rivalry.


    in reply to: Dendritic cell vaccine therapy #14798

    thankyou Helen for posting a link to the charity you have set up in memory of Alan here in the UK – I noticed that you have a link to DC therapy and I thought it might be helpful to post it here under the DC thread as it explains clearly how the treatment works. It is also very encouraging to hear that this treatment is being taken seriously at a respected cancer research institute here (we travelled to Germany to get this treatment for my Dad and I believe that it prolonged his life significantly without having to suffer harsh side effects). Anyone interested in this treatment may also be interested to investigate the immunotherapy research unit at St Georges Hospital, London.

    Here is the link:


    ps – Sara, wishing you every success with your treatment
    very best wishes, Jules



    I would just like to ask you for some factual evidence to substantiate your claims against Dr Canady. I think that you should bear in mind that successful surgical resection offers alot of hope to cc sufferers in the fight against this horrendous disease. Of course, it should be stressed that this surgery is no small undertaking and that does carry risk and that the recovery may not be smooth (indeed it rarely ever is). I am sure that any good surgeon would explain clearly the risks and prepare their patient fully for the operation.

    I would urge anybody contemplating surgery to seek opinions from experienced liver surgeons only and to question them on experience with cc resections (how many have they performed?) – also consider researching into your surgeon (read published articles that he has contributed to for example).

    The debate concerning aggressive surgery rumbles on in the medical press. However I have noticed a shift in opinion more recently and it would appear that it is more widely accepted that an aggressive technique offers improved patient outcomes.

    I do understand Neill’s eurphoria concerning his wife’s successful surgery and I wish her the very best for a speedy recovery.




    there are surgeons who are willing to do aggressive surgery (my dad had a resection see my other posts on Prof Lodge here in the UK). Although aggressive surgery was previously frowned upon there seems to be a shift in opinion and I have found research supporting more radical surgery offering improved outcomes.

    [Radical surgery for hilar cholangiocarcinoma (Klatskin tumor).]

    Cir Esp. 2007 Jul;82(1):11-5

    Authors: Ramos Rubio E

    In patients with hilar cholangiocarcinoma, long-term survival critically depends on complete tumor resection. Indeed, there are no long-term survivors with positive resection margins. Furthermore, hilar cholangiocarcinoma seems to have a low propensity for distant metastases and adjuvant therapy after surgery has not been shown to have clear clinical benefits. This evidence should be regarded as arguments for extended resections. The question remains of how to achieve an R0 resection. In the last few years greater use of major hepatectomy has increased resectability and has improved long-term results. Concomitant resection of the caudate lobe is recommended as this site is a prime area of local recurrence. Frozen sections should be routinely used to assess the remnant proximal and distal ductal stumps. However, if the proximal remnant is positive, additional ductal resection at the separating limits is not always feasible. Gross portal vein invasion has a negative impact on survival, but should not be a contraindication to resection. Hepatectomy with portal vein resection can offer long-term survival in some patients with advanced hilar cholangiocarcinoma. The incidence of nodal involvement in resected specimens has been reported to range from 30% to more than 50% and there is a correlation between primary tumor extension and nodal involvement. Lymphatic metastases from hilar cholangiocarcinoma appear to spread first to pericholedochal nodes in the hepatoduodenal ligament and then to spread widely toward the posteriorsuperior area around the pancreatic head, portal vein and common hepatic artery. Routine lymphadenectomy should include all these areas. The only factors precluding resection are involvement of celiac, superior mesenteric or para-aortic tumoral nodes. Survival is closely associated with the extent of nodal involvement. The no-touch technique including right trisegmentectomy combined with portal vein resection has been proposed as the surgical procedure of choice for a more radical approach, and as a measure to prevent dissemination of tumor cells during surgery.

    PMID: 17580025 [PubMed – in process]

    source: http://news.rare-cancer.org/PubMed___Cholangiocarcinoma/2007/06/

    in reply to: He’s given up… #17475


    I am sorry to hear that your husband is so low. My Dad suffered terribly with depression during his illness and I used to try so hard to lift him out of it – chattering away most of the time about anything and everything, desperately trying to distract him, it was exhausting. He was very bitter and angry and really he had every right to feel that way and he would get snappy with me. Sometimes I would just sit with him and hold his hand and we would curse this disease together, I would tell him that I was sorry, that I would do everything I could to help and that I would be there for him. I tried to focus on simple pleasures. My dad hated the cold – I would light a fire for him, he loved that. We would sit and drink a cup of tea together, watch a favourite TV programme, I would encourage him into the garden if it was a nice day, when my Dad was very low he wasn’t very chatty although he seemed to like me to sit next to him, to just be there.

    Carol, I know that this is the hardest time ever for you right now, there is no right or wrong way, we just try to do our best faced with this nightmare situation that is all we can do. I remember once saying to my Dad that I was sorry for always trying to cheer him up, that I recognised that my attitude must leave him very alone with his fears.. that opened him up to talk a little, although I think that he was always thinking of me and only telling me as much as he thought I could cope with. I regret now that he had no outlet for his darkest fears. Is there anyone outside of the family who could talk to your husband?

    I don’t know if anything I have written will help you – I just wanted you to know that this is a recognised state of mind with this disease (and any other cancer I suppose) – I would try to look at it that it is the cancer he is mad at not you (if he gets snappy) and try to find an outlet for his fears and to accept that he might not want to talk, that by just being there, sitting with him is a comfort I am sure.

    I hope that the surgery goes smoothly for him and that this can give him some hope for the future, as you rightly say a successful resection offers real hope in the fight against this disease, I hope that this will lift his spirits a little.

    Thinking of you both,

    in reply to: My Father, and My Best Friend #17509


    I am so sorry for the loss of your dear father and for the pain and anguish that you must be feeling right now. I hope that in time you are able to take comfort from the fact that you were there with him during those dark days and that must have meant so much to him, I am sure that he felt loved and cherished beyond words.

    I feel for you so much as I know only too well how it feels to lose such a special father in this way, my heart goes out to you and your family at this immensly difficult time.


    in reply to: My Aunt Babs just died Friday night of this horrible disease #17218

    Dear Karen

    I am so sorry that you are having to go through this with your mum especially having lost your Dad and other close family members so recently. I just wanted to give you some information that might help:

    – your mum’s fluid can be drained (a simple and painless procedure that needs to be done in hospital usually over a 24 hr period as the fluid should not be taken off too quickly to avoid drop in blood pressure) – this could be combined with the use of diuretics – spironolactane and frusemide in combination usually works for about 50% of patients. Usually with drainage of fluid it will accumulate quite quickly afterwards although I found that the diuretics worked quite well with my Dad. Also if your mum’s ankles/legs are swollen she should sit with her feet raised above hip level and when she is in bed you might want to try placing a pillow under her calves.

    – as regards stents you might want to ask your mum’s Drs if they would consider a metal stent as these tend to be less prone to infection and blockage, generally plastic stents are used as they are less expensive and I found that I had to push hard for a metal stent to be used. If the stent works well and the bile can be drained then your mum’s comfort should be eased considerably.

    I am afraid that muscle wastage, lack of appetite, nausea and extreme lethargy are all too common symptoms with this disease. The best that we can do as caregivers is to ensure that our loved ones are as comfortable as possible, I know this is an utterly exhausting time however if you are able to fight your mums corner with the Drs and ensure that she is provided with procedures that can ease some of the symptoms then you will be comforted by knowing that you have done your very best for her as it is clear that you are already doing this by finding this site and researching this disease.


Viewing 15 posts - 1 through 15 (of 166 total)