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December 6, 2013 at 9:52 pm #21703cthorntonParticipant
I did Ipi from last Sept until this July. I just progressed after one round of IL2 and am now searching for PD1 or going to try and do TIL.
I am trying to determine where I should do TIL treatment? MD Anderson or NIH?
there seem to be several different trials…..is there any info on which combo of TIL I should try to get?December 7, 2013 at 1:28 pm #63164
There hasn’t been a phase III trial on the TIL treatment comparing it properly to another agent, so it is hard to verify what the results are with this treatment. I can advise you it is very rough and often the last ditch effort for some patients but it often leaves them without further treatment options. NIH is reported to have the best results but they are very selective in who they allow into the trial. Your costs will all be covered though.
If I were you, I would continue your search for PD1 or look at PDL which Rochelle (Martha) posted about. There is also the ADC trial at Sarah Cannon, Detroit, and Angeles Clinic which Jonathan has talked about here. These are treatments that do not have the debilitating side effects ands toxicity you will encounter with TIL and they are outpatient rather than inpatient (Intensive Care Unit).
You are smart to weigh your options! Let us know what you find out and path you plan to take so we can support you.December 7, 2013 at 7:31 pm #63165AnonymousGuest
Here are some rather technical articles on TIL:
Progress is still being made with TIL, though slow but they want to proceed with regulatory approvals which would require phase III clinical trials.
Of those actually treated with the current TIL protocols, response rates appear to be consistently ~50% versus ~30% for “intent-to-treat”(which means some who enter a TIL program with the intent to be treated are not treated for one reason or another like lack of TIL growth, progression of disease..). Responses seem to be rather durable.
The first paper hints that TIL in combination with Braf, IPI or PD-1 might be effective but that’s in the future.
TIL is physically a very rough and demanding treatment. It takes time which may leave you with fewer options afterwards if it does not work (but the same can be said for IPI as well)
Hope this helps to give you some perspective.
JeffDecember 7, 2013 at 11:24 pm #63166
Actually, it has been tried with Yervoy (IPI) but there was little response and the trial hasn’t reported in. But one fellow on it (blog of Patient Number 1) had growth of tumors after being told this was a top treatment. He is now on Pd1 and doing well last I heard. Most studies are authored with bias by those who promote the trials, i.e MD Anderson, Moffitt and NCI. The trial at NCI costs about $500K per patient but is underwritten by tax dollars.
I will also admit some persona bias after losing someone very dear to me from this treatment. I had great reservations about TIL prior to losing her though. It is risky to take the immune system to zero (much like the bone marrow transplants which have fallen out of favor.) I think we have such great options now that are outpatient and not toxic, I would go for them first. I will be convinced that this is a viable treatment when I see the scientific study, randomized with another agent.December 8, 2013 at 12:24 am #63167jamesaParticipant
I agree with Catherine. I too have great concerns regarding TIL treatment for all the same reasons that Catherine sighted.
No only did we loose Pati, but Nick Auden, who was a healthy, athletic, 40 ish man, being treated with TIL at MD Anderson. Nick’s website stated while having TIL treatment, he ended up in intensive care and then died within days after being sent home.
In my opinion, I would do TIL as a last resort. It is just too toxic!
JamesDecember 8, 2013 at 1:29 pm #63168
I had no idea what had happened to Nick. I worked with him and tried appealing for Pd1 but he had meningeal disease which is really difficult to treat and I don’t know of any pharma giving it out in compassionate use. I am surprised they did allow him into the TIL regimen, but knowing his stamina I’m sure he insisted. Pati entered TIL therapy in much better condition than Nick and it really robbed her of her ability to fight further. It seems illogical and archaic to use such old methods, to get a good result. Melanoma clears up on its own in a small percentage, those without systemic treatment and I think it is the immune system suddenly recognizing the enemy. So I’m not sure we should weaken the body at all in this fight. Just my two cents.December 8, 2013 at 4:39 pm #63169AnonymousGuest
I have to agree. Going with other immunotherapies alternatives would be my first choice as well. TIL is just so toxic right now(they have to shut down the immune system to enhance the TILs longevity otherwise its response rate appears no better than PD-1) and based upon our own tragic experience here anyway, there appears to be a mortality rate associated with the treatment (but I’ve never seen one published).
TIL needs more work (TIL composition, best way to grow it,mitigating the need for the radiation & chemo…), and, to their credit, its advocates admit that.
But honestly, if it were me and I had a choice, for example, between TIL and the BMX combo trial of IPI & PD-1 at 3Mg each, I’d go for the BMX combo in a second…and I’m slow.
The initial BMX combo phase 1B trial showed results at least as good as the overall TIL results, fast & deep responses, an impressive number of complete responses, and is considerably less toxic (though the combo is more toxic than IPI alone, but the SEs can be managed).
The problem right now is that the PD-1 trials are just about full I guess, and the ADC & PDL trials are starting to ramp up. I just hope a gap doesn’t develop between promising trials, leaving patients with less desirable options.
Thank you Catherine (!!) for your tireless efforts in staying on top of these trials and digging out openings.
JeffDecember 8, 2013 at 7:41 pm #63170
I agree with all of the comments over the concerns with TIL and also think that if you have the option of a PD-1 or PDL you should certainly go that way. Many though do not have that option and I can certainly see why they try TIL. Although there are some personal cases on this site that haven’t turned out so well there are also many success stories with TIL. Sometimes I wonder if the TIL results are impacted by the fact that many use it as their last ditch option. I corresponded a few times with Nick Auden in the months prior to his passing and I know that was certainly the case with him. I don’t think TIL is as successful as the PD-1 or PDL treatments right now but I think it has the potential in the future to be the treatment of choice. I know the economics aren’t in it’s favor right now but I think it could be in the future. Below is a link to an article of TIL being used in Leukemia. I am encouraged and amazed at the progress the scientific community is making. Although most of us are in these trials for self preservation and there is certainly no shame in that, I also like to think about how our participation helps these trials which is another reason why one might want to consider a TIL trial.
BrianDecember 8, 2013 at 11:28 pm #63171AnonymousGuest
Brian, it’s good to heat from you. How are you doing on your trial?
JeffDecember 9, 2013 at 12:00 am #63172
Doing great Jeff. Thanks for asking. After the first 12 week cycle of 6 infusions of Nivo my scans showed slight to moderate reduction and no new mets. I have my 3rd IPI infusion in about a week. Still feel really good although I can definitely tell I have less energy on the IPI. Have lots to be thankful for this time of year. Hope you are doing well.
BrianDecember 9, 2013 at 3:54 pm #63173AnonymousGuest
Not to hijack the thread but what is the structure of your trial?
Are you being given the IPI course after an intial course of PD-1with no more PD-1 during the IPI or is the IPI being given concurrent with the PD-1? Is the PD-1 course restarted later?
JeffDecember 9, 2013 at 5:29 pm #63174cthorntonParticipant
I really, really appreciate the thougthful and heartfelt responses. Due to my entering the Ipi trial (E1609 ) in the adjuvent setting I was not eligible for the recent PD1 trials and thus had no real alternative other than IL2 . Like so many I am hopefule that pd1 gets approval soon and is widely available. PDL , from what I have been able to find, is not as good as PD1, so I am hoping to find something to get into now.December 10, 2013 at 7:58 pm #63175 Jeff,
My trial is NCT01783938. Phase II trial with two arms. Arm A is Nivo – Ipi – Nivo. Arm B is Ipi – Nivo. I’m in Arm A. It will be real interesting to see the data come in from all these different sequential and concurrent trials of IPI and Nivo.
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