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May 22, 2013 at 6:37 pm #21297
I would like to open a discussion here about the therapy. Does anyone need any further clarifications of this therapy and how it works. The toxicity of IL2 was said to be over exaggerated. Do you agree?May 22, 2013 at 11:15 pm #60880kylezParticipant Catherine, for the archived presentation, playing back on the web and playing back the download, the sound cuts out at 34:30 into the presentation, and is silent/gone for the rest of the presentation. Any idea what might be going wrong? Playback was fine for the first 34 minutes.
Thanks, KyleMay 22, 2013 at 11:19 pm #60881
We will be in touch with the company (Cisco) and see what happened, so sorry! Darn! We’ll find out and let you know. It was their fault and they are working on it.May 23, 2013 at 4:01 pm #60882 So let me just try to balance the presentation for you. Please look at Pati’s blog for a true picture of how toxic IL2 can be. Also keep in mind that the numbers in NCI trials are small and very select population of people. This is not a therapy for everyone to get excited about just yet.May 23, 2013 at 4:54 pm #60883EricW1Participant Hi Catherine,
I noticed on Pattis blog she will get results this week. Is that correct? Curious how her TIL treatment performs? The IL-2 scares me as well. Wondering if something like IL-21 could be used instead of the Il-2?May 23, 2013 at 5:41 pm #60884Craig_GParticipant
I skimmed Pati’s blog, but I was looking for a summary of someone that has been thru TIL.
1) How do you apply, do you move to where NCI is? Maybe just call them?
2) Timeline of the “typical” TIL patient – stages you go through –
3) Tell me again, what is the success rate of TIL?
Guess I just want to see the quick reference guide to TIL.
I had the same problems with the video – volume cuts out about halfway thru…
CraigMay 23, 2013 at 8:15 pm #60885
You can call the NCI hotline: 1-800-4Cancer and ask for a connection to the program. You do have to stay there, inpatient for 10 days I think he said and outpatient the first week with the initial chemo regimen. They pay your transportation and lodging.
Now for results: a very small number of patients have done this procedure and it has not been randomized to another therapy. So I don’t think we can really estimate results yet. As with any therapy you need large numbers enrolled and to be tested against another viable therapy.
We are working with Cisco to hopefully restore the second half which has questions such as yours here. So thanks for asking. Also, you must be between 18-70 yrs old and in good shape to enroll. It is a very rigorous therapy. And the cost is paid by the taxpaying public about $800K per patient.May 27, 2013 at 1:46 am #60886BNP68Participant
I thought it was a fantastic and informative webinar. A couple points that really struck me:
1) Dr. Rosenberg’s statement that although overall they are about 20% DR, the most recent tweaks of the procedure is up to about 40% DR. I also liked his confidence that he thinks they can get above %50.
2) I love his use of the “cure” word. The fact that of the 20 DRs only one has had a recurrance is remarkable.
A couple questions I had:
1) Right now you have to have the tumor removed at NCI to be eligible for the trial. I wonder how long the tumor can be resected before they are no longer able to draw the TIL cells from the tumor for reproduction. Imagine this scenario: Patient has tumor resected and is NED and no treatment is given. 3 years later the patient has a recurrence. Could the tumor be used 3 years later to manufacture the TIL cells?
2) He talked about the other procedure of manufacturing the TIL cells from the blood and not the tumor. Has this been done yet and has it been just as effective as the tumor TIL cells? This could have awesome implications for those with tumors that can’t be resected.
I’m not sure about his IL-2 toxicity comment. I guess if you compare it with some chemothearapy treatments maybe in comparison it’s not that toxic but it does sound pretty tough.
Thanks for continuing to do these great webinars.
BrianMay 28, 2013 at 5:36 pm #60887HeinParticipant
The tumortissue can be frozen. They did it with me having the TIL in Amsterdam. Because of a bacteria the week before I initially would start the TIL, they had to pospone for a month. They did not have to get fresh tissue as they had some frozen “leftovers”. The only thing they had to do again was the leucafarese to get the white bloodcells. I don’t know about such a huge time gap you are thinking about.
HeinMay 29, 2013 at 12:18 am #60888kylezParticipant
Can you explain Dr. Rosenberg’s remarks about IPI? It’s the section from 21:07 thru 22:12. He said (and it’s on the slide too) that for a complete response (CR), in descending order, Zelboraf had 6.3%; IL-2 had 6%; DTIC had 2.7%; and IPI had 0.6%. Is he really saying that DTIC is a more effective therapy than IPI?
I will say 6% CR figure for IL-2 is the number I’ve had in my head for a long time from other sources. But I thought the CR numbers were higher for IPI, e.g., higher than IL-2 and DTIC. Am I misunderstanding something about the term “CR” and how it has been applied to IPI? Or have I been mistaken in my understanding of IPI?
Thanks, KyleMay 29, 2013 at 5:09 am #60889benpParticipant
Thanks again for organizing these, they are very helpful and insightful. Any word on whether the sound issue can be fixed on this webinar?
Also, you state:
“..the cost is paid by the taxpaying public about $800K per patient.”
Where does this huge figure come from? I paid up front, out of my pocket for TIL (though not in the U.S.). The full treatment cost was approximately 10% of the cost you quoted.
Ben.May 29, 2013 at 9:35 am #60890HeinParticipant
Ben is right, the estimated costs seem to be extremely high compared to Europe: Manchester it’s about GBP 50K and Amsterdam about € 40K. I don’t know if these costs in Europe also include follow-up check-ups, but even then 800K is a huge difference.
HeinMay 29, 2013 at 2:49 pm #60891
It is hard to quantify, because the U.S. taxpayers pay for the therapy at NCI. There is no insurance coverage, etc to be billed and therefore no regulations on amount of procedures etc.. But one patient was told if they had to pay out of pocket it would be around $500K. There are many scans, meds to offset the side effects etc.
And may I add that Cisco who we pay for our webinar service has the worst customer service in the world!! They admitted they made a mistake and erased half of the audio but won’t get around to restoring it. Maybe a little bad publicity might move them along but I doubt it. We pay dearly for this webinar service but they honestly dont’ care.
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