Orphan Drug Status for Trphendiol

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  • December 5, 2008 at 5:52 am #19281
    tiapatty
    Member

    See the following post for an update on the status of Triphendiol:

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2171

    February 26, 2008 at 2:50 am #19280
    marions
    Moderator

    I would like to correct my posting in re: to the Phase II clinical study completed with patients. The phase II clinical study I was referring to in my original posting had been completed with patients suffering from ovarian cancer only however, in the two Phase I clinical studies completed thus far, the investigational drug has demonstrated acceptable pharmacokinetic profiles in human volunteers with no reported side effects. This drug has not been tested in patients with CC. It received

    February 25, 2008 at 3:20 pm #19279
    grafsj
    Member

    Thanks for the information on the orphan drug Triphendiol. I plan on taking a copy of the article to our oncologist next Monday.

    Steve

    February 25, 2008 at 6:25 am #19278
    marions
    Moderator

    Alice,
    I don’t have any more information other then what has been posted by me and the additional link given by Gen. It will be highly unlikely for many physicians to have been exposed to this drug at this time as it just has received orphan drug status. It would be the physician making contact with the drug company in order to receive more info in re: to the efficiacy of this product.
    I will look into this further within the following week and pass on whatever information I can gather.
    Marions

    February 25, 2008 at 1:21 am #19277
    allicat859
    Spectator

    marions,
    I printed out the pages on triphendiol and we took it Johns doctor on Wednesday. He said he had never heard of it and kind of dismissed me. I sure would be interested in what some of your doctors have to say about it. And when they think it might be approved for use on cc.

    Alice

    February 25, 2008 at 12:41 am #19276
    carol58
    Spectator

    I will Kris. I hope you and Hans are well. I think of you often. Holding thumbs, huh? Sounds good to me. All good thoughts and wishes to you too.

    Carol

    February 24, 2008 at 8:00 pm #19264
    devoncat
    Spectator

    Carol,
    Give Dr. Sanoff a big Hiydee Ho from me. I am wishing nothing but the best for Charlie and this next appointment. As they do in Sweden, I will be holding my thumbs for you!

    Kris

    February 24, 2008 at 6:52 pm #19265
    carol58
    Spectator

    Thank you Gen and Marions for the links about Triphendiol. I printed them out and will take them with us when Charlie meets with Dr. Sanoff this week to give her – just in case she hasn’t heard about it. I’ll update after MRI and appt. Orphan drug – I never knew what that meant. Thanks again!

    Carol

    February 24, 2008 at 1:32 pm #19274
    matt69scrambler
    Spectator
    JeffG wrote:
    Dear Matt and Valerie- It is great to hear that Valeri’s tumor is smaller. And I’m glad to see that you are active in raising funds for cancer research. However, as cruel as it might sound I do feel it is inappropriate to use another foundation’s website by attaching a link to highway of hope to solicit donations for individual donations or any donations. This site supports it’s members in many ways and has it’s own donation program for research for the benefit of all touched by this disease. The Cholangiocarcinoma Foundation has it’s own vision,mission,and values. I know other members have some concerns about you posting this link on this site requesting individual donations. I personally would love to see you as members of the cholangiocarcinoma organization but would prefer that the link not be part of your posts as this just isn’t what this site is all about. Most if not all on this site have dealt with with the financial burden created by this terrible disease. Some members even have trouble with their Insurance Companies approving coverage for certain treatments to extend their lives. So again, I personally would love to see you as part of our family but please drop the link, as we all are aware of the expense involved with fighting this disease. I do pray and wish you both the only the best.
    God Bless,
    Jeff G.

    Sorry you all feel that way. It wasn’t ment to be taken that it was just for us. It tells you that a percentage of any and every sale goes to cancer research. There is even a link to this site , cholangiocarcinoma.org . I had even planed on making a donation to this site with $ raised from the Highway of Hope and the muscle car hobby.
    We thought we were doing something that could help everyone as the car and motorcycle hobby is huge with lots of nice people that might help us all.
    I removed all my post , no problem. I to know I will be selling all our stuff as we can’t pay for all the treatment eithier. I was just trying to use it for awareness while we still had it.

    I wish you all well, we were just trying to help everyone in some small way .
    Johnny Lighting diecast donated a bunch of their car models we are going to sell on ebay and at car shows to raise awearness for Cholangiocarcinoma.
    Never know who might be able to help in a big way, just need to get the word out there. I had never heard of it before Valeri found out she has it.
    Matt & Valeri

    February 24, 2008 at 5:35 am #19275
    jeffg
    Member

    Dear Matt and Valerie- It is great to hear that Valeri’s tumor is smaller. And I’m glad to see that you are active in raising funds for cancer research. However, as cruel as it might sound I do feel it is inappropriate to use another foundation’s website by attaching a link to highway of hope to solicit donations for individual donations or any donations. This site supports it’s members in many ways and has it’s own donation program for research for the benefit of all touched by this disease. The Cholangiocarcinoma Foundation has it’s own vision,mission,and values. I know other members have some concerns about you posting this link on this site requesting individual donations. I personally would love to see you as members of the cholangiocarcinoma organization but would prefer that the link not be part of your posts as this just isn’t what this site is all about. Most if not all on this site have dealt with with the financial burden created by this terrible disease. Some members even have trouble with their Insurance Companies approving coverage for certain treatments to extend their lives. So again, I personally would love to see you as part of our family but please drop the link, as we all are aware of the expense involved with fighting this disease. I do pray and wish you both the only the best.
    God Bless,
    Jeff G.

    February 24, 2008 at 12:58 am #19273
    matt69scrambler
    Spectator
    pderat wrote:
    Hello all-Dave and I are back from CTCA where we met Matt and Val Wilson. We share the same doctor there and we asked him to look into this drug and hope to have some news about it next month when we go back. Dave was really bad when we got there with a calcium of 14. Feeling much better today after a new drug for the calcium and a week of chemo. Keeping up the fight. Hugs to all.
    Patrice and Dave

    Patrice,
    It was nice to meet you and I’m glad Dave is feeling better.

    I had printed off all the information I could about this new drug and asked our Doctor at “Cancer Treatment Centers of America” about it yesterday 2-22-08. He said he hadn’t heard of it yet but asked if he could have my copies so he could find out about it. He seemed real glad that there might be a new way to fight this cancer as he had a smile on his face when I told him about it. We had just walked out of the exam room and sat down when you saw us. It is nice to know that you and Dave went in next and asked him about the same new drug !!!!!!!!!!!!
    Doctor said Valeri’s tumor is a little smaller after one round of chemo,great !!! We go back in two weeks and I hope he has some good news to tell us about this new drug. We believe this cancer can be beat and hope many can win the fight. I don’t care what the numbers say as every cancer has been beaten by someone somewhere.
    God Bless,
    Matt & Valeri

    February 24, 2008 at 12:16 am #19272
    jeffg
    Member

    Patrice and Dave – Glad to see you back at home and feeling much better. That would be nice to hear if they can get their hands on that new drug. Sounds so promising. I would love to hear someone say Bingo!
    God Bless to You Both!
    Jeff G.

    February 23, 2008 at 5:29 pm #19271
    pderat
    Member

    Hello all-Dave and I are back from CTCA where we met Matt and Val Wilson. We share the same doctor there and we asked him to look into this drug and hope to have some news about it next month when we go back. Dave was really bad when we got there with a calcium of 14. Feeling much better today after a new drug for the calcium and a week of chemo. Keeping up the fight. Hugs to all.
    Patrice and Dave

    February 22, 2008 at 11:41 pm #19270
    marions
    Moderator

    rjoday,
    that is what it is about…sharing our information…we are all yearning for the same….answers and a cure for this cancer.
    My best to all,
    Marions

    February 22, 2008 at 10:47 pm #19269
    rjoday
    Member

    Yes, thanks so much for this article. I appreciate you sharing it!

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