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August 26, 2013 at 12:37 am #21542MathewRParticipant
Catherine, I’m writing in response to your last TIL post.
I was diagnosed Stage IV in July (first recurrence since being Stage 1 ten years ago). My (then) melanoma specialist’s strong recommendation was to pursue TIL at NIH. (I’m 40 years old, otherwise in good health and this would’ve been my initial treatment.) I was accepted into the NIH protocol for TIL w/chemo versus TIL w/chemo and TBR, subject to being re-scanned. The scans didn’t go well–too much tumor progression, particularly in the liver. Fortunately, I tested positive for BRAF V600E. I’ve been taking the Tafinlar-Mekinist combo for 3 weeks and have had outstanding results so far.
However, I’m looking around the corner at “what’s next?” (i.e., once the combo stops working). I’m aware of Anti-PD-1 and the success rate, but of course it hasn’t been around long enough for a durable remission rate. When I was at NIH, they cited durable remission rates of 20% (TIL w/chemo) and 40% (TIL w/chemo and TBR), respectively. These rates are hard to ignore even if you assume that the NIH “manages” the denominator to a degree, e.g., by preferring younger, otherwise healthy patients.
You have some strong opinions around TIL–presumably based on the “real world” experience of a number of members. Can you elaborate (aside from the brutal nature of the treatment)? For example, you mentioned that you only knew of two successful cases. Two out of approx. how many? Did the successful cases achieve a complete response/durable remission to date?
MatAugust 26, 2013 at 2:21 pm #62315
Yes, sadly, my real world experience is the loss of patients who did the TIL and after it could do nothing else. I am not convinced that these numbers quoted to you are real when compared in a phase III study against the newer agents. The idea of depleting your immune system is a scary one to me with melanoma, and that is what the first chemo agents do in the process. IL2 has a 6% or less response rate on its own.
I would look to the ADC trial (check out Jonathan’s post) it is very promising, minimal side affects and no hospitalization.
The two patients I know of who responded to the TIL are still on the early side of it. Time will tell, but the losses are not publicized. One who didn’t respond (and was told it was THE therapy to do) writes a blog, Patient Number One.. he was the perfect patient for it, young and athletic. He is now doing well on PD1.August 27, 2013 at 4:34 pm #62316woollie48Participant
I am just wondering if my son is one of your two . He is still doing well 12 months after TILs and had exhausted other treatments being under 18 he was not eligible for trials.August 28, 2013 at 11:58 am #62317
I was thinking of your son. So happy he is still doing well. He is so young to go through all of this but perhaps that is on his side! I hope this continues for a very long time. Please keep in touch and let us know how he is doing.September 5, 2013 at 7:55 pm #62318HeinParticipant Hi Mat, I am probably the other one of two patients Catherine was talking about.
Worldwide there are at least 100 still living CR to TIL: about 25 in Israel, 70+ in the US and 2 so far (Woolies son and me) in Europe. I am doing just great and in octobre it will be two years after the TIL. In the US there are CR who have done the TIL over 5-7 years ago and they are still completely free of Melanoma.
You can find my experiences as I did the TIL in octobre 2011 on this forum. With exception of the shivers during IL2 the rest was really easygoing, considering the circumstances.
The trick in TIL is how many T-cells they can grow (in my case 192 billion). The more, the better the chance of getting CR. Being healthy and/or atlethic is no guarantee of succes (the amount of T-cells is) but is to prevent complications during the TIL due to other healthissues.
Dr. Rosenberg did a webinar on this site on TIL-results a few months back but I don’t know if it is still available due to some technicaldifficulties at that time.
Good luck in whatever you decide.
HeinSeptember 6, 2013 at 1:20 am #62319MathewRParticipant
Thanks Hein. Very encouraging.September 6, 2013 at 3:48 pm #62320 Just to moderate a little, I’m always thrilled when this works for folks, and very happy for Hein! But I have a lot of reservations about the therapy. I do know patients who grew their til cells wonderfully but did not respond to the therapy. I am working with two young people who failed to respond to TIL and are now seeking other therapies. Sometimes the failed response leaves the person vulnerable to rapid growth of disease. So please do lots of research of the alternatives before leaping into it.September 7, 2013 at 3:19 pm #62321HeinParticipant Here in Holland TIL is only for patiënts who have no more alternatives left, just like in my case. With me the rapid growt of tumor after Vemu stopped working was also very frightening: from peasize to potatosize in less than two months. So I guess this happens in every treatment when it stops working.
Furthermore I have downloaded the webinar with Rosenberg when it was still on the site and stored it on my PC. If you would like to have it to put it back on the site, just let me know. The last part of the complete webinar (the questions) though, is also missing in my download.
HeinSeptember 8, 2013 at 5:44 pm #62322
We can ‘t post the webinar without full audio, thanks though Hein. It would not be a balanced presentation. We do have the Jeff Weber webinar which was just as enthusiastic as Rosenberg. Again, very happy it has been a good therapy for you Hein. But as you know I am skeptical on the numbers presented so far of patients who have sustained response and will continue to want to see a full blown randomized phase III trial to be convinced of its promise.
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