ashley
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Donna,
Whether or not it is in addition to pancreatic, he does have bile duct cancer also. My mother has a carepage and I was keep up with a few other carepages for patients with CC and I read that Ernie Harwell recently made a visit to a local fundraiser in his area being held for a CC patient. The update made the connection that they were both fighting the same disease.
Hopefully he is doing well.
AshleyPatrick and Marion,
Pub Med has an abstract on stats after transplant.I’m computer illiterate when it comes to links, etc.. so I can only provide you with the name of the abstract. Hopefully one of you can pull it up and link to to the board?
Thanks
Ashley“Predictors of disease recurrence following neoadjuvant chemoradiotherapy and liver transplantation for unresectable perihilar cholangiocarcinoma”
Here is the email reply I received on Oct 27, 2009
Dear Ashley,
You are correct that the FDA approval was to allow studies to proceed in both pancreatic cancer and cholangiocarcinoma, but due to limited resources the company has decided to only progress the pancreatic cancer studies at this time. We have not commenced any trials with triphendiol yet and we are still in the process of engaging a contract manufacturer to undertake scale-up manufacturing of the drug to enable sufficient quantities to undertake the planned studies. There is no indication at this stage of when the trial will commence.
Thank you for your inquiry.
Regards
Alan HusbandKris,
I wonder if it is another drug called Davanat. It helps to allow higher doses of 5-FU get to the tumor. Trials were done a few years ago so I’m not sure it is all that new. Or had it done wonders maybe we would have heard more about it??
AshleySure enough I went back and checked the marshalledwardsinc.com website.. In August 2009 it says the FDA approved Triphendiol for BOTH pancreatic and CC trials but it is in orphan drug status. (?) So, I have another email into Alan Husband of Novogen to see what this means.
Any other pipeline drugs anyone is aware of?
AshleyHi Kris,
The only potential I am aware of is triphendiol ( the Novegen website spoke of its use in bile duct cancer). I had emailed about triphendiol back in July 2009 and here was the response: ( the website sounded more hopeful)Triphendiol is an investigational drug and it is not approved for sale or clinical use, except under controlled conditions of approved clinical trials. While we have announced that the FDA has approved a proposed trial of triphendiol in pancreatic cancer patients, we are not at this stage planning to explore its use in cholangiocarcinoma. There is still work to be done in manufacturing drug and designing study protocols before we can commence any studies. There are no other trials current with triphendiol in the treatment of cancer, but we are moving as rapidly as possible towards obtaining the approvals necessary for this clinical study in the US. I cannot predict when these trials may be able to commence as the timing for manufacturing and protocol approvals will be in the hands of regulatory authorities and it will likely be early 2010 before we are in a position to commence the first study. However we will be announcing our progress in due course and you should keep a watch on the Marshall Edwards, Inc. website for any news (http://www.marshalledwardsinc.com ).
Sincerely
Alan HusbandProf Alan J Husband
Group Director of Research
Marshall Edwards, Inc.
140 Wicks Road, North Ryde, NSW, 2113
AustraliaHi Michelle,
I’m so sorry to hear about your dad’s passing. I’m glad you were able to have him come home to be surrounded by loving family during his last few days.
Thinking of you at this very difficult time,
Ashley.HI Bill,
I’m sorry to hear about your wife. I’m certain that many of your questions can be answered by the caring members of this site.
I was wondering about the fever, which usually means an infection. Does your wife have any stents for bile duct blockage? Does she have a disease called PSC? Or perhaps is her tumor blocking her ducts? You would most likely have this info by checking her blood counts. Some higher numbers usually signify an obstruction. I’m not certain that the chemo itself would cause the fever – atleast not from my mother’s experience with fevers and chemo.Do they know the origination of the cancer? Pancreas vs liver?
Where are you located? This discussion board has a section of hospitals and doctors recommended by the members if you feel you need another opinion. We generally suggest more than one for CC, as it is so rare.
My best wishes for you and your family. Keep the questions coming and keep us posted and we will help the best that we can.
AshleyElaine,
I am so sorry to hear about Gary. My prayers are with you. I’m glad you and your family and friends got to comfort him on his last days. He is resting in peace.
AshleyApril
I’m very sorry to hear the news about your mom’s latest scans. I hope her new treatment shrinks her tumors so that microspheres or radiation can be looked into as futures options for her. Please keep us posted.
AshleyYou may even want to add some of John’s own words from his website. He definitely had this uniquely ‘cool’ journalistic writing ability ( can you tell I am an accountant and have trouble writing??) and perhaps adding in a few of his examples ( sarcasms/opinion, etc) would help describe him. As for what he meant to you – just speak from your heart and you will have found the right words.
Again, I’m really sorry to hear about John’s passing. My thoughts go out to you and your families.
AshleyWow. I had also been checking John’s site and was concerned that he wasn’t updating it. Even when Hospice was called he claimed it was not the end – that they were just needed to get the pain under control.
I really hate this awful disease.Hi Lauri,
Welcome back and please keep us posted. Your mom has been though a lot but great news to hear that her first treatment allowed her to be resected – the fact that one tumor was necrotic is wonderful news. It sounds like her hospital is on the cutting edge.. you may want to add it to the new hospital section on the site to help others in your mom’s area.
I’m also interested to hear what the docs decide since her case is pretty unique.
I wish you and your family the best.
Ashley
