anatta23

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

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.

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

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

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.