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Question about TIL/ACT treatment

Forums General Melanoma Community Question about TIL/ACT treatment

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       Usually I am just a lurker here on this forum. I follow some people stories closely and look up to them to get information. Celeste, Paul,  and Josh's posts  got me through some really difficult times.  My husband Eric was diagnosed at stage IV  in 2014. His disease remained  regional during yervoy, keytruda and a cavatak trials.  In January a CT scan confirmed mets to his lungs.   He has been out of treatment since then due to fighting with the insurance company to go out of network.  Now Eric has to make a choice. He is being seen by Dr. Luke at University of Chicago  and is about to start a trial that we are not really hopeful about (MGA271 + yervoy)   But it is the only one available right NOW through U of C.  He is otherwise healthy and continues to work full time.  My question is: before starting the trial should we have the large tumor in his shoulder removed so they can start  using it for TIL ?  Is TIL even worth it?  Will NCI or M.D. Anderson accept  a fresh tumor removed by another institution?   If they can, it would save us a lot of time and a trip to Texas.   Has anyone had any success with the glembatumubab trial? ( ideally, it's the trial we wanted to be in)

       Has anyone else had success in getting insurance to pay for one trial while undergoing a different one?   If so, how? We have an HMO through BCBS   And cannot change to a PPO until November. Even then both MDA and NCI  would be considered "a non-participating hospital" and we would have to pay 40% of any treatment.   Anyone who has had some success in dealing with the insurance companies, I would love to hear from you!   Thank you in advance. 


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          Sorry for all that you and your husband have endured and are still facing.  However, this board does indeed provide much succor and info for many (glad if I played a small part)!  So here is what I can offer given your questions:

          1.  Most trials forbid participation in another.  Meaning…I have known those who were actively in one trial and then tried to go get another started – and ended up loosing both.  And…that doesn't begin to address insurance coverage.  However, I think it is completely legit and possible…that you could have a tumor removed and "banked", before starting a trial, for growing cells should you wish to do that later….as long as having that tumor for measureable disease doesn't preclude your participation in the first trial…if that makes sense.  Some on this board have done similar things, perhaps they will offer their knowledge.  I would be super honest with your oncologist and see what they can help you work out.

          2.  TIL – these days that can mean several different things.  Here is a link to all the posts I've made regarding TIL:  These are in chronologial order.  Some may be pertinent to you and others not.  However, if you look at the May 2016 post…it gives a bit of an overview.

          3.  Glembatumab – I presume you are referring to antibody-drug conjugate glembatumumab vedotin.  I have a dear one who credits it with giving him a year of life…that then allowed him stability and to find a treatment that worked even better for him.  It is not as free of the "old school chemo" side effects as was advertised, probably due to the "link" not being as "linked" as was hoped…there was some hair loss, neuropathy…but still….  Here are the related posts I have:  

          4.  I hate all insurance companies whole heartedly and equally.  I have had to petition and have my docs appeal all kinds of basic care year after year – despite paying top dollar for my BCBS plan.  Again, speak honestly with your onc about what you need and have them appeal and re-appeal and re-appeal as required until you get the care you need.

          Not sure if all this helps you much.  Asks more particulars if you have them.  I wish you both well.  Celeste

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