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Viewing 11 posts - 1 through 11 (of 11 total)
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  • anatta23
    Participant

    Julie, Steven…..
    Thanks for the good wishes.
    I think you need a cooperative oncologist who already has some experience
    with the drug and with the company.
    We got the approval in less than a week.
    I feel privileged and grateful.

    Paul

    anatta23
    Participant

    Marion,
    I am happy to report that MERCK PATIENT ASSISTANCE PROGRAM approved my application for potentially 6 months of KEYTRUDA and I received my first infusion last week. Without information on predictive markers this is a shot in the dark but I think it is worth the effort.
    Wish me luck :)
    Paul

    anatta23
    Participant

    Marion…
    Thank you for your efforts.
    It would be very interesting to hear what AGIOS has to say.
    How can they justify witholding essential information after submitting the patient to a hazardous and painful procedure? (risk of bleeding, infection, organ damage, tumor spread). Did they get any tumor tissue? (Often they do not) If so, are there any new mutations?
    The signed consent has a total of 31 pages and few patients will read every sentence of it unless it is specifically pointed out to them.
    In a general sense I feel it is extremely important that pharma companies show transparency in their trials, sharing gleaned information in order to make progress in the fight against cancer.
    It has been said that not enough patients sign up for clinical studies. Yet it will be difficult to entice more people to submit to the often unpleasant procedures if they feel that their personal welfare is not being respected..
    Best regards,
    Paul.

    anatta23
    Participant

    Marion…
    Thanks a lot for the info.
    Just a little correction – I’m not sure how the “mom” slipped in – the person I am advocating for is myself.
    : ) Paul

    anatta23
    Participant

    Steven….we did the repeat PET/CT and the results are not good. After 2 months of Ag-120 there is significant new growth, so I am off the trial.

    I am now looking at Keytruda off label as a possible albeit costly alternative. This would be something of a crapshoot given that in my case the predictive tests are either negative or unavailable. I had hoped that the tumor biopsy might reveal some new genetic alterations that could help when looking at new approaches, yet when asking repeatedly about the results of my biopsy I have only received evasive answers.
    .
    Looking carefully at the trial consent I signed, I now came across the following statement that I had not seen before:

    “YOU WILL NOT HAVE RIGHTS FOR INFORMATION OBTAINED FROM YOUR TISSUE OR BLOOD SAMPLES.”

    Could somebody please explain to me why anybody would wish to withhold from a trial patient information that could potentially save his life?
    Best regards,
    Paul

    anatta23
    Participant

    Hello Steven
    Thank you very much for responding.
    I am due for new imaging studies in the next two weeks to see if I derive any benefit from Ag-120. My side effects have been relatively mild, mainly diarrhea, pretty well controlled with imodium.
    I am aware, of course, that even under the best circumstances targeted therapies, such as Ag-120 for IGH1 mutations are unlikely to be curative. They can keep the disease stable for a while until – hopefully- some suitable immunotherapy exits the pipeline. Right now Keytruda sounds exiting but it seems only to work well in patients who are also positive for mismatch repair deficiency, if I am not mistaken.

    Anyway, I’ll keep you posted and hope to hear from more people on this particular trial.

    All the best for your mother.

    Paul

    anatta23
    Participant

    Good morning,
    I have not written for a the longest time, more than 3 years to be exact, even though I have followed the board on a regular basis. After extensive surgery, SBRT to a portocaval node, a
    short course of chemo followed by re-exploration and abdominal hernia repair one year ago,
    I now experienced a more aggressive recurrence of the malignancy as I am running out of treatment options. Genetic profiling had revealed genomic alterations that included IDH1.
    Therefore I applied and was just recently accepted into the Agios Ag-120 trial. I do not have follow-up results yet but would be interested to establish contact with other patients who are on that trial.
    Thank you for being there,
    Anatta23

    in reply to: Beat Liver Tumors interview #82614
    anatta23
    Participant

    Congratulations! Well done!
    A good item to place on Facebook to increase public awareness.
    Thank you.

    in reply to: Hello everyone I am Pat a very blessed cc survivor #70343
    anatta23
    Participant

    Congratulations. Your story gives us all hope.
    Would you be so kind as to mention the size of the tumor and the grade of differentiation when it was discovered?
    Thank you and enjoy your new life.

    in reply to: 6 Years and Doing Great! #68701
    anatta23
    Participant

    Congratulations, Sue.
    It is persons like you that give hope to the rest of us. .
    Reading through the posts on the boards can get quite depressing after a while. So, your feedback is very welcome indeed.

    (Anatta23)

    in reply to: Polyneuropathy preceding diagnosis #68965
    anatta23
    Participant

    Thank you, Marions, for your kind words.
    I just received my latest labs which show a significant improvement of the liver
    values. So,considering the rarity of polyneuropathy in cholangiocarcinoma , the condition may be coincidental, after all.
    Well, only time will tell.
    Unfortunately, in spite of the positive news, the anxiety remains.

    Best regards,
    Anatta23

Viewing 11 posts - 1 through 11 (of 11 total)