SSchulz

Ali,

I am so sorry to hear of your recent news and as many on this board can identify in many ways.  My short story is: 39 now and have a 2 year old (she was still in the belly when I first met my oncologist).  I had thigh melanoma in 2001 – removed with wide excision, nodes negative – no problem until 2009 then had small nodule (met) in neck show up no other disease – removed no problem – PET scans through June 2011 negative until mets showed up (lung, SQ x3, and femur).  Faced with many of the same choices/questions you have now.  My treatment road, which has made sense so far has been:

I live in Seattle where they are doing some adoptive T-cell therapy, similar but different from the NIH program.  Because TCells take 6-10 weeks to grow and it looked like I had the time (none of my disease appeared life threatening).  I chose to get my TCells going before doing High Dose IL-2.  That way, if I was one of the lucky 6-12% who responded to HD IL-2 then my cells would chill until I needed them.  If not, then by the time I finished IL2 – about a 3 month process including follow-up scans.  My TCells would be ready.  I had a very limited response, but no progression after IL2.  So I enrolled in a trial that includes the TCells and ipi.  I just finished the ipi and it hasn't been bad for me.   I really liked not having to wait between treatments.  Of course, this has been helped by where I live and access to the trial.   I am BRAF mut + too and plan to exhaust all other options before starting it given the short window of efficacy.  If I have progressive disease soon (aka no response to the ipi) I believe my next step will be to try a TIL cell trial if I qualify. 

I wish you the very best during this most difficult time.  I just started spending time on this board but plan to be a little more active.  Mainly because, while it is important, I don't like feeling like a guinea pig and want to help solve this problem for us and those behind us.  Please don't hesitate to email if I can help.

Troy

Ali,

I am so sorry to hear of your recent news and as many on this board can identify in many ways.  My short story is: 39 now and have a 2 year old (she was still in the belly when I first met my oncologist).  I had thigh melanoma in 2001 – removed with wide excision, nodes negative – no problem until 2009 then had small nodule (met) in neck show up no other disease – removed no problem – PET scans through June 2011 negative until mets showed up (lung, SQ x3, and femur).  Faced with many of the same choices/questions you have now.  My treatment road, which has made sense so far has been:

I live in Seattle where they are doing some adoptive T-cell therapy, similar but different from the NIH program.  Because TCells take 6-10 weeks to grow and it looked like I had the time (none of my disease appeared life threatening).  I chose to get my TCells going before doing High Dose IL-2.  That way, if I was one of the lucky 6-12% who responded to HD IL-2 then my cells would chill until I needed them.  If not, then by the time I finished IL2 – about a 3 month process including follow-up scans.  My TCells would be ready.  I had a very limited response, but no progression after IL2.  So I enrolled in a trial that includes the TCells and ipi.  I just finished the ipi and it hasn't been bad for me.   I really liked not having to wait between treatments.  Of course, this has been helped by where I live and access to the trial.   I am BRAF mut + too and plan to exhaust all other options before starting it given the short window of efficacy.  If I have progressive disease soon (aka no response to the ipi) I believe my next step will be to try a TIL cell trial if I qualify. 

I wish you the very best during this most difficult time.  I just started spending time on this board but plan to be a little more active.  Mainly because, while it is important, I don't like feeling like a guinea pig and want to help solve this problem for us and those behind us.  Please don't hesitate to email if I can help.

Troy

Ali,

I am so sorry to hear of your recent news and as many on this board can identify in many ways.  My short story is: 39 now and have a 2 year old (she was still in the belly when I first met my oncologist).  I had thigh melanoma in 2001 – removed with wide excision, nodes negative – no problem until 2009 then had small nodule (met) in neck show up no other disease – removed no problem – PET scans through June 2011 negative until mets showed up (lung, SQ x3, and femur).  Faced with many of the same choices/questions you have now.  My treatment road, which has made sense so far has been:

I live in Seattle where they are doing some adoptive T-cell therapy, similar but different from the NIH program.  Because TCells take 6-10 weeks to grow and it looked like I had the time (none of my disease appeared life threatening).  I chose to get my TCells going before doing High Dose IL-2.  That way, if I was one of the lucky 6-12% who responded to HD IL-2 then my cells would chill until I needed them.  If not, then by the time I finished IL2 – about a 3 month process including follow-up scans.  My TCells would be ready.  I had a very limited response, but no progression after IL2.  So I enrolled in a trial that includes the TCells and ipi.  I just finished the ipi and it hasn't been bad for me.   I really liked not having to wait between treatments.  Of course, this has been helped by where I live and access to the trial.   I am BRAF mut + too and plan to exhaust all other options before starting it given the short window of efficacy.  If I have progressive disease soon (aka no response to the ipi) I believe my next step will be to try a TIL cell trial if I qualify. 

I wish you the very best during this most difficult time.  I just started spending time on this board but plan to be a little more active.  Mainly because, while it is important, I don't like feeling like a guinea pig and want to help solve this problem for us and those behind us.  Please don't hesitate to email if I can help.

Troy

Hi,

I had my 4th dose of ipi last week as part of a clinical trial I am on.  So far I have had no side effects except for some minor itching.  I've continued to work and play soccer twice a week.  In fact I often joke with my onc that they placed me in the placebo arm of the trial (which there isn't one).  All the while knowing that side effects can happen at any time, so far I've been very lucky – now just waiting to see if I respond….  As far as supplements go – I would echo what others have mentioned.  While taking a relatively new treatment (ipi), that has a rather large potential side effect profile, I would avoid other treatments.  Especially, if your body has not had any experience with these other treatments in the abscence of ipi.   Good luck and may we all experience shrinkage!

Hi,

I had my 4th dose of ipi last week as part of a clinical trial I am on.  So far I have had no side effects except for some minor itching.  I've continued to work and play soccer twice a week.  In fact I often joke with my onc that they placed me in the placebo arm of the trial (which there isn't one).  All the while knowing that side effects can happen at any time, so far I've been very lucky – now just waiting to see if I respond….  As far as supplements go – I would echo what others have mentioned.  While taking a relatively new treatment (ipi), that has a rather large potential side effect profile, I would avoid other treatments.  Especially, if your body has not had any experience with these other treatments in the abscence of ipi.   Good luck and may we all experience shrinkage!

Hi,

I had my 4th dose of ipi last week as part of a clinical trial I am on.  So far I have had no side effects except for some minor itching.  I've continued to work and play soccer twice a week.  In fact I often joke with my onc that they placed me in the placebo arm of the trial (which there isn't one).  All the while knowing that side effects can happen at any time, so far I've been very lucky – now just waiting to see if I respond….  As far as supplements go – I would echo what others have mentioned.  While taking a relatively new treatment (ipi), that has a rather large potential side effect profile, I would avoid other treatments.  Especially, if your body has not had any experience with these other treatments in the abscence of ipi.   Good luck and may we all experience shrinkage!