NIH TIL low dose chemo trial

Mindy, I'm sorry to hear of your daughter's Stage IV diagnosis at such a young age, but welcome to the MRF forums — hopefully you can get some information and encouragement through others' experiences here.  I've been Stage IV since my original diagnosis just over 4 years ago July 2010, but only recently started participating here and have found it to be a great resource and also a small way to help others through my own journey.  In your case, I can share that I participated in a TIL trial at NIH back in 2010-2011.  It has been a long journey, even the TIL portion was a winding road where I didn't receive my cell infusion until March 2011, despite being there off and on for six months prior.  Regardless, despite some setbacks along the way, even to this day, I credit TIL and NIH as a major reason I'm still here and able to fight this while trying to live my life and raise my family.  I have a 20 year-old and can't imagine having to watch her go through this.  So please, come back here and let us help when you have questions or needs.  I also have a tendency to be write too much, so enough about me and in to your question…

I was on the high-dosage chemotherapy lymphoidepletion regimen (2 days of cyclophosphamide followed by 5 days of fludarabine) without total body irradiation (TBI).  The low-dosage regimen is part of a newer trial, but I've heard that they're seeing encouraging results.  However, I doubt it will make a difference in how quickly you might expect to see those results, if anything, it might take a little longer?  An important thing the doctors, nurses, and fellows at NIH told me many times is that response time could vary, not just from patient to patient, but even tumor to tumor in the same patient, as the immune system "ramps up" and activates its tumor fighting activities.  As TIL cells get to "the scene", tumors could even appear to enlarge as they join I'm the fight.  A quick response is possible, but can also be the result of the chemotherapy itself, which isn't the intent of the chemotherapy, in the case of TIL at least.  So those chemotherapy agents can't reduce tumors, too, but alone, the results aren't likely to last.  It's the act of the chemotherapy preparing the way for the TIL cells to dominate the immune system where the action will happen.

For me, I had a subcutaneous tumor on my right temple in the soft tissue outside the cranium that within a week of chemotherapy, while I was still an inpatient, we could see shrinking.  It was so quick that my wife and I were afraid to even consider it possible and didn't say anything to each other about it for days and then laughed about it later when we finally had the nerve to say something to our fellow at NIH.  However, he again reminded us that while it wasn't a bad thing, the real results would take longer, and that the shrinkage could simply be a response to the chemotherapy.  That was the only visible tumor I had at the time.  Another palpable one in my underarm didn't feel much different physically in size (frankly, I could never feel it at all anyway).  At my first CT scan at six weeks, the one on my temple had continued to shrink significantly and by 12 weeks was gone from any scan (PET-CT and CT alone).  At 6 weeks, one in my chest on the mediastinum (internal chest wall), was mostly stable as was the one in my underarm.  By 12 weeks, the chest one started shrinking and was gone three months later.  The one in my underarm never seemed to shrink and eventually was surgically removed, 80-90% was dead scar tissue, with the assumption that the rest was on its way to the same fate.

So the lesson for me was that slow and steady wins the race, or at least keeps us in the race!  I would say three weeks is early to expect to see anything, it's possible, but not an indicator of long term success.  I hope your experience at NIH has been good, curious which doctors you've seen so far (if you're willing to share, otherwise, I understand).

Kind regards and best wishes,

Joe

Mindy, I'm sorry to hear of your daughter's Stage IV diagnosis at such a young age, but welcome to the MRF forums — hopefully you can get some information and encouragement through others' experiences here.  I've been Stage IV since my original diagnosis just over 4 years ago July 2010, but only recently started participating here and have found it to be a great resource and also a small way to help others through my own journey.  In your case, I can share that I participated in a TIL trial at NIH back in 2010-2011.  It has been a long journey, even the TIL portion was a winding road where I didn't receive my cell infusion until March 2011, despite being there off and on for six months prior.  Regardless, despite some setbacks along the way, even to this day, I credit TIL and NIH as a major reason I'm still here and able to fight this while trying to live my life and raise my family.  I have a 20 year-old and can't imagine having to watch her go through this.  So please, come back here and let us help when you have questions or needs.  I also have a tendency to be write too much, so enough about me and in to your question…

I was on the high-dosage chemotherapy lymphoidepletion regimen (2 days of cyclophosphamide followed by 5 days of fludarabine) without total body irradiation (TBI).  The low-dosage regimen is part of a newer trial, but I've heard that they're seeing encouraging results.  However, I doubt it will make a difference in how quickly you might expect to see those results, if anything, it might take a little longer?  An important thing the doctors, nurses, and fellows at NIH told me many times is that response time could vary, not just from patient to patient, but even tumor to tumor in the same patient, as the immune system "ramps up" and activates its tumor fighting activities.  As TIL cells get to "the scene", tumors could even appear to enlarge as they join I'm the fight.  A quick response is possible, but can also be the result of the chemotherapy itself, which isn't the intent of the chemotherapy, in the case of TIL at least.  So those chemotherapy agents can't reduce tumors, too, but alone, the results aren't likely to last.  It's the act of the chemotherapy preparing the way for the TIL cells to dominate the immune system where the action will happen.

For me, I had a subcutaneous tumor on my right temple in the soft tissue outside the cranium that within a week of chemotherapy, while I was still an inpatient, we could see shrinking.  It was so quick that my wife and I were afraid to even consider it possible and didn't say anything to each other about it for days and then laughed about it later when we finally had the nerve to say something to our fellow at NIH.  However, he again reminded us that while it wasn't a bad thing, the real results would take longer, and that the shrinkage could simply be a response to the chemotherapy.  That was the only visible tumor I had at the time.  Another palpable one in my underarm didn't feel much different physically in size (frankly, I could never feel it at all anyway).  At my first CT scan at six weeks, the one on my temple had continued to shrink significantly and by 12 weeks was gone from any scan (PET-CT and CT alone).  At 6 weeks, one in my chest on the mediastinum (internal chest wall), was mostly stable as was the one in my underarm.  By 12 weeks, the chest one started shrinking and was gone three months later.  The one in my underarm never seemed to shrink and eventually was surgically removed, 80-90% was dead scar tissue, with the assumption that the rest was on its way to the same fate.

So the lesson for me was that slow and steady wins the race, or at least keeps us in the race!  I would say three weeks is early to expect to see anything, it's possible, but not an indicator of long term success.  I hope your experience at NIH has been good, curious which doctors you've seen so far (if you're willing to share, otherwise, I understand).

Kind regards and best wishes,

Joe

Mindy, I'm sorry to hear of your daughter's Stage IV diagnosis at such a young age, but welcome to the MRF forums — hopefully you can get some information and encouragement through others' experiences here.  I've been Stage IV since my original diagnosis just over 4 years ago July 2010, but only recently started participating here and have found it to be a great resource and also a small way to help others through my own journey.  In your case, I can share that I participated in a TIL trial at NIH back in 2010-2011.  It has been a long journey, even the TIL portion was a winding road where I didn't receive my cell infusion until March 2011, despite being there off and on for six months prior.  Regardless, despite some setbacks along the way, even to this day, I credit TIL and NIH as a major reason I'm still here and able to fight this while trying to live my life and raise my family.  I have a 20 year-old and can't imagine having to watch her go through this.  So please, come back here and let us help when you have questions or needs.  I also have a tendency to be write too much, so enough about me and in to your question…

I was on the high-dosage chemotherapy lymphoidepletion regimen (2 days of cyclophosphamide followed by 5 days of fludarabine) without total body irradiation (TBI).  The low-dosage regimen is part of a newer trial, but I've heard that they're seeing encouraging results.  However, I doubt it will make a difference in how quickly you might expect to see those results, if anything, it might take a little longer?  An important thing the doctors, nurses, and fellows at NIH told me many times is that response time could vary, not just from patient to patient, but even tumor to tumor in the same patient, as the immune system "ramps up" and activates its tumor fighting activities.  As TIL cells get to "the scene", tumors could even appear to enlarge as they join I'm the fight.  A quick response is possible, but can also be the result of the chemotherapy itself, which isn't the intent of the chemotherapy, in the case of TIL at least.  So those chemotherapy agents can't reduce tumors, too, but alone, the results aren't likely to last.  It's the act of the chemotherapy preparing the way for the TIL cells to dominate the immune system where the action will happen.

For me, I had a subcutaneous tumor on my right temple in the soft tissue outside the cranium that within a week of chemotherapy, while I was still an inpatient, we could see shrinking.  It was so quick that my wife and I were afraid to even consider it possible and didn't say anything to each other about it for days and then laughed about it later when we finally had the nerve to say something to our fellow at NIH.  However, he again reminded us that while it wasn't a bad thing, the real results would take longer, and that the shrinkage could simply be a response to the chemotherapy.  That was the only visible tumor I had at the time.  Another palpable one in my underarm didn't feel much different physically in size (frankly, I could never feel it at all anyway).  At my first CT scan at six weeks, the one on my temple had continued to shrink significantly and by 12 weeks was gone from any scan (PET-CT and CT alone).  At 6 weeks, one in my chest on the mediastinum (internal chest wall), was mostly stable as was the one in my underarm.  By 12 weeks, the chest one started shrinking and was gone three months later.  The one in my underarm never seemed to shrink and eventually was surgically removed, 80-90% was dead scar tissue, with the assumption that the rest was on its way to the same fate.

So the lesson for me was that slow and steady wins the race, or at least keeps us in the race!  I would say three weeks is early to expect to see anything, it's possible, but not an indicator of long term success.  I hope your experience at NIH has been good, curious which doctors you've seen so far (if you're willing to share, otherwise, I understand).

Kind regards and best wishes,

Joe