› Forums › General Melanoma Community › TILS in USA
- This topic has 13 replies, 9 voices, and was last updated 3 years, 8 months ago by
Roberto.
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- July 7, 2020 at 7:00 pm
Hi All
Is anyone aware of any Us facilities that can offer TILS therapy either through trial or privately funded. The option in the UK has stopped private paying TILS as they gear up for trials so looking outside the UK at Israel and maybe US. If anyone has paid for TILS in the US I would be grateful for an idea of costs please.
Thanks
Mark
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- July 7, 2020 at 10:16 pm
If you are interested in TILs trials, here are the recruiting and soon-to-be recruiting TILs trials across the globe via Clinicaltrials.gov: https://clinicaltrials.gov/ct2/results?recrs=ab&cond=Melanoma+Stage+IV&term=TIL&cntry=&state=&city=&dist=I simply put in TIL and Stage IV melanoma and recruiting/soon-to-be. You can modify the search however you like. If you click on the trial it tells you the drug regimen, the inclusion and exclusion information, and further down all the locations at which the trial is offered. Hope that helps. celeste
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- July 7, 2020 at 10:24 pm
As far as cost – that varies a great deal from trial to trial. Some have little or no cost the patient. The only thing that was covered for my trial was the drug and the research labs. I had to cover any charges that my insurance wouldn’t, and was charged for all other labs, required CT’s and MRI’s, time at the hospital and all supplies used, as well as doctor’s fees, etc. BUT – I am here! I would call the facility and the clinical trail coordinator listed on ANY of the trials I was remotely interested in! New arms are often added that change inclusion/exclusion criteria. Plus they should be able to advise you on how costs are apportioned. c -
- July 8, 2020 at 1:52 am
Mark – there seemed to be some trials in Denmark and the Netherlands – if true this would seem manageable from the UK. (US is expensive unless you have insurance or can work out how to negotiate w hospitals and I have no idea how to do this)
Celeste, is it really as simple as that – if Mark meets the exclusion criteria can he try to get in? And should Mark consider other non TILs trials in Europe? Mark, is your specialist at Royal Marsden doing trials or aware of trials outside the UK that might be good for you?
Good luck hope you can find the right trial nearby the UK -
- July 8, 2020 at 7:53 am
Thanks both for your input
I have been looking at trials in the UK, but the only TILS trials exclude Brain mets so i am ineligible to join them. As i am Braf negative and had a few adverse reactions to Immuniotherapy i don’t have too many choices with TILS certainly being the best option for me. My team haven’t been that helpful with looking beyond chemo and radio therapy which is largely palliative which has been a bit frustrating. Have an appointment with them next week to discuss this further with the consultants but not that hopeful. I have looked at the European trials but the entry requirements for brain mets are quite challenging and need stability for some months first which seems a bit unlikely for me at the moment.I have been looking at Israel that offers TILS both privately ($200k) and there is a couple of TIL trials. I hadn’t thought about a US drug trial and thanks Celeste for the list i will start going through them today and see what options I can generate from that. TILS is reallly my last chance so throwing everything at it at the moment and see what comes up
Cheers
Mark
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- July 8, 2020 at 9:01 am
Hi Mark, I would try and get in touch with Dr. Michael Davies at MD Anderson and find out where his research is on Oxphos brain Mets treatment program. The concept he is researching is explained in next two links. https://cancerdiscovery.aacrjournals.org/content/9/5/628 https://www.mdanderson.org/newsroom/study-finds-melanoma-brain-metastases-are-immunosuppressive-with.h00-159300678.html -
- July 8, 2020 at 12:36 pm
Hi Mark,
As Ed said, I would definitely consider MD Anderson. As you know, we live 15 minutes away. You are MORE than welcome to stay with us, or at least know you have someone in the city to drive you around, help etc. Your family is welcome too, depending on who travels with you if you travel for a trial, but I know the pandemic is complicating things such as how many can be with you etc. Also, if you need boots on the ground here to do any pre discussion with MD Anderson, say the word, and I will gladly run there for you, etc. I have a very close friend who is going through treatment now. You can also get a patient ID number by registering through the system, which helps when you begin communicating with Dr. and setting up a consultation. I’d be curious to see if they are doing any online consultation in this current environment. It’s a humongous campus, so I can help navigate if you end up over here. Dr. Davies works with Dr. Hwu as well who I really like.I can speak as someone who is involved on the operational side with NIH funded studies and some pharmaceutical sponsors. It does really depend on the trial and what disease is being researched, how well funded the study is and if any restrictions on the funding. Generally speaking, in the past travel/hotel wasn’t covered other than a nominal patient payment to cover things like parking/taxi. When the study is reviewed by a review board, they will look to see if the the nominal payment patients are receiving doesn’t “bias” “influencne”, or “coerce” study recruitment. There has been a lot of murky understanding around reimbursing patients but FDA has now clarified that travel/hotel reimbursement is not coercive and is considered acceptable part of clinical trials: https://www.centerwatch.com/articles/12708-fda-clarifies-stance-on-clinical-trial-reimbursements-for-patient-travel-lodging
Depending on the design of the study and what is considered clinical care (that which you would receive normally in your treatment which would be billed to insurance) versus research related. If the study dictates research related procedures outside of clinical care this should be covered by whoever is sponsoring the study, so those costs such as any imaging the study protocol outlines, blood draws, xrays, interventional treatment etc. Industry/Drug Company studies may cover more costs, so it depends on who the sponsors of the trial are, but the trials I’ve been involved in generally don’t cover travel/hotel, but there are studies that do cover patient reimbursement of travel/lodging and if they are trying to get a drug to market and if they need to recruit from all over due to the nature of the disease (NORD was cover patient travel costs for a rare disease study since they had to recruit from the world). So those variables probably all come into play when they figure in patient reimbursement, how well funded the study probably is the key variable. My opinion is it never hurts to ask!
Again, if you feel MD Anderson is the place and you want to stay with us to conserve costs, our house is your house. I have to warn you though, my parents raised me on British TV, so I’m well versed in every British television show ever, ad nauseum. Wishing you and your family only the best.
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- July 8, 2020 at 8:58 pm
Jackie, I dont know the person who is asking for TILs here but my heart feels so happy to read the help you have offered. This is the greatest empathy i have seen in mankind i my life ( I am only 38 yrs )
It just makes me feel how compassionate a stranger can be and I have also seen some blood relations been ____ ( I lost the word ) . Thank you and God bless you ! -
- July 8, 2020 at 10:28 pm
Jackie is more awesome than even this post shows!!! This is not the first time she has made such generous offers and far from the first time she has provided tangible help to so many of us here over the years! It is lovely to see, isn’t it???? She is an angel on this earth for sure!!! c -
- July 11, 2020 at 1:50 pm
Hi Jackie
Wow – this is so very kind of you – thank you so much for the offer.
I’m sorry its taken a while to respond but its clear that my only option now is treatment abroad and my sister started a GoFundMe Page on Tuesday evening and its been a bit crazy ever since. Only a few people outside my immediate family and friend now about my illness so there has been quite a few messages to respond to over the last few days. I had been looking at Israel but am going to start looking seriously at the US as the travel restrictions with Covid look a little easier as well as me knowing the country and language quite well through visiting many times in the past. I am going to hit the trials research on Monday (its my birthday on Sunday) and start the investigations although my sister has already contacted a few centres to discuss options. Hopefully i can find something but particularly interested in MD Anderson as always wanted to visit Texas but haven’t yet had the chance. I know its a bit of cliche but always fancied going to a C&W bar like I have seen in so many films!!
I’ll keep in touch and let everyone know how the research is going
Many thanks again
Mark -
- July 13, 2020 at 7:26 pm
Freakin AWESOME! hell yah bro, come to America!!, we’re just like you guys over there across the pond, just a lil’ more agitated and we absolutely LOVE our Wars, we do, cant be an honest country without them…
But Texas? Its hot and humid there! You obviously have a connection there? Haha, Texas is probablly the last TRUE American State, i have 2 brothers, Tim & Daniel, they both live in South Texas in a small town of Laredo right at the freakin border! I believe i wrote about it here on MRF, i hated the town, DirtBagvilla, shoulda been the name, i got to visit last year before my tumor got out a hand (the Sigmoid one, it was small back then!) They like it there, their both cross country truck drivers….What about here in California? Southern California that is, the air is dry, warm & it will clear up all that morning “Fog” in your bones, i should look but, my clinic, The Angeles Clinic, just may have trials using TILS, i believe Cedars Sinai, an affiliate of The Angeles Clinic, has the trial underway but dont quote me, ill research further for you and give or link you to my findings…
Hell yah man, when im done writing, im gunna search for your GoFundMe account, Mark R? Or whats it listed as?? Maybe you said how its listed in other replys, if not PLEASE tell us! Im pumped for you bro! Lets get you treated American style! You may go home agitated and leary about your neighbors but you might be under control with our shared disease!! -
- July 15, 2020 at 12:23 pm
Hi Mike
Good to hear from you and glad to hear your treatment has been going well and you finally got your operation – long may it continue!!
Been a bit delayed as was my birthday this week and today finished my second round of SRS to the brain with one more to go tomorrow. Not the most fun of experiences so will be glad to get that completed.
I think there is something about Texas for non-Americans probably as we all watched Dallas too many times and we all have this idea of walking round in cowboy boots and stetsons. Have been to quite a bit of the US but not made it there and would like to at some point. I lover California, been there a few times and stayed in LA twice and loved it. Its amazing to have sunny beaches, desert and mountains all within a couple of hours drives. I’ve not been anywhere else like it and we always head up to Big Bear Lake for a few days when we go there. I’ve been getting onto hospitals and particularly Moffitt in Tampa, MD Anderson and Yale which has been the most promising so far with a response. As they are east cost its a bit easier for me for travelling as NYC is only a 6-7 hour flight and reasonably cheap and then its 1.5 hour drive to Yale. Need to see how it goes as Tampa would be good as well as I’ve been to Florida more times then i can remember and now the area well. I’m also getting in touch with IOVANCE who are running the main TIL trial and they may have other suggestions for me. Its going to be either Israel or the US for treatment and i know i am a lot more comfortable with the US as we are cousins after all.
My GoFundMe Page has been listed as Mark’s Last Hope, but I haven’t shared it on either this or the UK Melanoma group I belong to as it has been doing well and I know that we are all in the same boat and many need the money themselves. I have kept the Cancer to only a very small group of people so it has been a bit of shock to many so the donations have been very generous (we have raised nearly $90k dollars in 7 days) and hope to have a few more large donations coming in. GoFundMe have also picked up on it and want to run it as a national media campaign as it has been doing so well. Its quite incredible, but if i do end up in the US i know how expensive medical bills can be so we will need the money.
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- July 8, 2020 at 9:06 pm
Hi Mark
I loved MD !! !!! I know that MD Anderson has a social service department that can assist with referrals to other agencies for help. There is a lot of support in the community for those receiving treatment. Networking with others is awesome. Most people riding hotel and public transportation are receiving treatment. Found everyone to be very nice and willing to help. Keeping you in my thoughts and prayers
Tammy -
- July 27, 2020 at 2:18 am
Hello, my wife did the TIL in Israel. The total cost can be up to $ 200,000, but it can be less, depending on where the injury will be removed. They have a specific area to treat foreigners, a kind of medical tourism. To facilitate the bureaucracy I hired a health agent, who takes care of everything for me. It is not essential, but it helps a lot. He really got things going. I strongly recommend. If you want any information feel free to ask
Roberto
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