carbotaxol, IL-2, or TIL

I can't add to any suggestions but has Derek had his HLA protein tested?  If his plan is to go to NIH to do the TIL he will have to be 0201 positive.  While their planning on trials in the future with different HLA factors they are not doing it rght now. Val just asked for me within the last month.  I believe that MDA does the TIL without the hla + but didn't know if your insurance would cover since you are from Canada.  Just wanted to make sure you knew those facts.

Wishing you and Derek success.  Hope that baby is growing and healthy. I know you are stressed right now.

Linda

I can't add to any suggestions but has Derek had his HLA protein tested?  If his plan is to go to NIH to do the TIL he will have to be 0201 positive.  While their planning on trials in the future with different HLA factors they are not doing it rght now. Val just asked for me within the last month.  I believe that MDA does the TIL without the hla + but didn't know if your insurance would cover since you are from Canada.  Just wanted to make sure you knew those facts.

Wishing you and Derek success.  Hope that baby is growing and healthy. I know you are stressed right now.

Linda

Hi Terra,

I realize that you are at a crossroad with treatment, and I know how difficult it is to make a decision – it would be much easier if there was a treatment that had a higher response rate (ie 50% or better).  All your options are viable ones – what you have to do now is decide where to start.

IL-2 and the TIL study are both good options.  The TIL study at NIH (Trial NCT01319565) does not require specific HLA typing – although many of their other very promising studies they are doing now do.  When you go to NIH, they consider what treatment is best for the patient, and not all of them include IL-2.  They are doing clinical trials that do not require tumor sample, which the HLA typing would then apply (if you go to clinical trials.gov, look under ESO and MAGE, these are just examples of some of the trials).  We tried to get Dave into the TIL, but he did not have tumor that was resectable.  He is currently doing IL-2 at Roswell, and should he not respond, he will go back down to see what else they have available – he is HLA and B-RAF negative.

I would bring up the option of IL-2 to your doctor, and in the meantime get in touch with NIH.  There is extensive testing for IL-2, and not every patient qualifies for it.  Pulmonary function and nuclear stress tests must be done, as well as a brain MRI.  I'm not sure if your husband is on steroids, but he has to be off of them for two weeks prior to IL-2.  Since all this takes time, it is best to get started as soon as possible.

If it was me, I would look at it like this:

Contact NIH – Linda Williams, Clinical research nurse, 866-820-4505 and see how fast you can get in there for an appt (We called on a Friday, and drove down the following Tuesday).

While you are waiting for your appt at NIH, contact your oncologist to see if he is a candidate for IL-2.  In all actuality, the response rate for other melanoma treatment drugs is not that much better than IL-2, and if you get a response from IL-2, there is a chance it is complete and durable.

If neither is an option, you still have carbo-taxol.

Best wishes to you and your husband, and keep us posted on what you decide.

Maria

Hi Terra,

I realize that you are at a crossroad with treatment, and I know how difficult it is to make a decision – it would be much easier if there was a treatment that had a higher response rate (ie 50% or better).  All your options are viable ones – what you have to do now is decide where to start.

IL-2 and the TIL study are both good options.  The TIL study at NIH (Trial NCT01319565) does not require specific HLA typing – although many of their other very promising studies they are doing now do.  When you go to NIH, they consider what treatment is best for the patient, and not all of them include IL-2.  They are doing clinical trials that do not require tumor sample, which the HLA typing would then apply (if you go to clinical trials.gov, look under ESO and MAGE, these are just examples of some of the trials).  We tried to get Dave into the TIL, but he did not have tumor that was resectable.  He is currently doing IL-2 at Roswell, and should he not respond, he will go back down to see what else they have available – he is HLA and B-RAF negative.

I would bring up the option of IL-2 to your doctor, and in the meantime get in touch with NIH.  There is extensive testing for IL-2, and not every patient qualifies for it.  Pulmonary function and nuclear stress tests must be done, as well as a brain MRI.  I'm not sure if your husband is on steroids, but he has to be off of them for two weeks prior to IL-2.  Since all this takes time, it is best to get started as soon as possible.

If it was me, I would look at it like this:

Contact NIH – Linda Williams, Clinical research nurse, 866-820-4505 and see how fast you can get in there for an appt (We called on a Friday, and drove down the following Tuesday).

While you are waiting for your appt at NIH, contact your oncologist to see if he is a candidate for IL-2.  In all actuality, the response rate for other melanoma treatment drugs is not that much better than IL-2, and if you get a response from IL-2, there is a chance it is complete and durable.

If neither is an option, you still have carbo-taxol.

Best wishes to you and your husband, and keep us posted on what you decide.

Maria

You stated: “Chemo does not make sense – on off chance ipi is late responder do not want to kill immune.”

My understanding of the TIL process is that they first wipe out the immune system then try to rebuild and enhance it. see: http://clinicalresearch.nih.gov/stories_breidenbach.html

It appears that TIL, while possible being effective, would still wipe out whatever is left from the ipi. 

I agree that of the choices you present here I would favor either the IL-2 or the TIL. I am not sure if having one of them eliminates one from having the other. This could also effect the decision.

You stated: “Chemo does not make sense – on off chance ipi is late responder do not want to kill immune.”

My understanding of the TIL process is that they first wipe out the immune system then try to rebuild and enhance it. see: http://clinicalresearch.nih.gov/stories_breidenbach.html

It appears that TIL, while possible being effective, would still wipe out whatever is left from the ipi. 

I agree that of the choices you present here I would favor either the IL-2 or the TIL. I am not sure if having one of them eliminates one from having the other. This could also effect the decision.

Hi Terra,

Would it make sense to pursue both for now?

Since IL-2 requires testing to qualify and TIL has a 3 month window while they grow cells ( if i'm thinking abou tthe correct treatment) plus they do chemo anyway before the cell transfer. Either way a visit to NIH is a good idea. They may  have other trials as well.

That way you'll know which Derek actually qualifies for and haven't wasted anytime pursuing only one of the two?

I had heard there might be a new trial opening at PMH in the fall with Dr. Hogg. I think Lisa on this board mentioned it, but i'm not sure if it's type specific or even what drug it's for.

Em

Hi Terra,

Would it make sense to pursue both for now?

Since IL-2 requires testing to qualify and TIL has a 3 month window while they grow cells ( if i'm thinking abou tthe correct treatment) plus they do chemo anyway before the cell transfer. Either way a visit to NIH is a good idea. They may  have other trials as well.

That way you'll know which Derek actually qualifies for and haven't wasted anytime pursuing only one of the two?

I had heard there might be a new trial opening at PMH in the fall with Dr. Hogg. I think Lisa on this board mentioned it, but i'm not sure if it's type specific or even what drug it's for.

Em