Opinions about NIH/NCI treatments?

Good question. I know my oncologist believes in their program–he seems to think that it has a higher success rate than others.I was turned down because of my age (although they don't post an age,  they say that older patients can't take the strain) so it's definitely not an easy treatment.

Good question. I know my oncologist believes in their program–he seems to think that it has a higher success rate than others.I was turned down because of my age (although they don't post an age,  they say that older patients can't take the strain) so it's definitely not an easy treatment.

Good question. I know my oncologist believes in their program–he seems to think that it has a higher success rate than others.I was turned down because of my age (although they don't post an age,  they say that older patients can't take the strain) so it's definitely not an easy treatment.

Hi Josh,

I am on the Merck Pd1 trial. As of my 24 week scans, I am a complete responder. However, there are others in the trial that have slowly, over months, have their tumors shrink. Some have just remained stable with no shrinkage to their tumors

As you know, everyone's immune system is different so your response to the drug may take longer to respond to the drug.

On your profile, you indicated that you started the Merck PD1 drug in Nov.2012. How do you know that you are not responding? Has Dr. Wolchok told you it is not working???? 

I have read this forum for over 5 years, & I have seen more people die than long term survive after participating Rosenberg's adoptive cell therapy trial. I only know of 1 maybe 2 people that have done well on this treatment.

Just my 2 cents. Good Luck!

A.

Hi Josh,

I am on the Merck Pd1 trial. As of my 24 week scans, I am a complete responder. However, there are others in the trial that have slowly, over months, have their tumors shrink. Some have just remained stable with no shrinkage to their tumors

As you know, everyone's immune system is different so your response to the drug may take longer to respond to the drug.

On your profile, you indicated that you started the Merck PD1 drug in Nov.2012. How do you know that you are not responding? Has Dr. Wolchok told you it is not working???? 

I have read this forum for over 5 years, & I have seen more people die than long term survive after participating Rosenberg's adoptive cell therapy trial. I only know of 1 maybe 2 people that have done well on this treatment.

Just my 2 cents. Good Luck!

A.

Hi Josh,

I am on the Merck Pd1 trial. As of my 24 week scans, I am a complete responder. However, there are others in the trial that have slowly, over months, have their tumors shrink. Some have just remained stable with no shrinkage to their tumors

As you know, everyone's immune system is different so your response to the drug may take longer to respond to the drug.

On your profile, you indicated that you started the Merck PD1 drug in Nov.2012. How do you know that you are not responding? Has Dr. Wolchok told you it is not working???? 

I have read this forum for over 5 years, & I have seen more people die than long term survive after participating Rosenberg's adoptive cell therapy trial. I only know of 1 maybe 2 people that have done well on this treatment.

Just my 2 cents. Good Luck!

A.

Josh, Read the blog Melanoma Mom, to get some positive feedback on the adoptive cell trials at NIH, while she didn’t have a straight trip to NED, she is doing really well and I know she credits their interventions. My husband did TIL at MDAnderson, and although he is far from NED, he has been stable for the past seven months without any additional treatment. I think TIL is so interesting because it has the potential to change and improve your immune system, and that’s very exciting stuff! Our doctor at Dana Farber also encouraged us to go for the TIL trial, we have never looked back, our best decision so far! The last several months, have been filled with good times, wonderful memories, and Phil has been strong and well! Who knows what the future holds, fighting melanoma is an unpredictable business. But, we would do an adoptive cell trial again in a heartbeat! Good luck to you, Valerie (Phil’s wife)

Josh, Read the blog Melanoma Mom, to get some positive feedback on the adoptive cell trials at NIH, while she didn’t have a straight trip to NED, she is doing really well and I know she credits their interventions. My husband did TIL at MDAnderson, and although he is far from NED, he has been stable for the past seven months without any additional treatment. I think TIL is so interesting because it has the potential to change and improve your immune system, and that’s very exciting stuff! Our doctor at Dana Farber also encouraged us to go for the TIL trial, we have never looked back, our best decision so far! The last several months, have been filled with good times, wonderful memories, and Phil has been strong and well! Who knows what the future holds, fighting melanoma is an unpredictable business. But, we would do an adoptive cell trial again in a heartbeat! Good luck to you, Valerie (Phil’s wife)

Josh, Read the blog Melanoma Mom, to get some positive feedback on the adoptive cell trials at NIH, while she didn’t have a straight trip to NED, she is doing really well and I know she credits their interventions. My husband did TIL at MDAnderson, and although he is far from NED, he has been stable for the past seven months without any additional treatment. I think TIL is so interesting because it has the potential to change and improve your immune system, and that’s very exciting stuff! Our doctor at Dana Farber also encouraged us to go for the TIL trial, we have never looked back, our best decision so far! The last several months, have been filled with good times, wonderful memories, and Phil has been strong and well! Who knows what the future holds, fighting melanoma is an unpredictable business. But, we would do an adoptive cell trial again in a heartbeat! Good luck to you, Valerie (Phil’s wife)

Josh, 

I went through a trial at NIH in May and have so far had a near complete response (fingers crossed for 2013).  They are doing a few variations on TIL/Adoptive cell transfer but their "standard" trial is referred to as the "randomized protocol".  Which is the infusion of TIL cells using myeloablation with or without the addition of total body irradiation.  

It is a difficult treatment but the care I've received has been great.  You will have to talk with them but on my first glance you may not be a candidate for some of their protocols because of you having had splenectomy.  Again, this is only my thought.  

I found the research nurses very easy to work with and very fast at getting back to me.  As I recall, they asked for all of my records and previous treatment protocols and copies of scans.  After an initial review they invited me to come out for a workup prior to being accepted.  It moved pretty fast, especially for melanoma trials.  

Good luck and let me know if I can give you any further information.  

Troy

Josh, 

I went through a trial at NIH in May and have so far had a near complete response (fingers crossed for 2013).  They are doing a few variations on TIL/Adoptive cell transfer but their "standard" trial is referred to as the "randomized protocol".  Which is the infusion of TIL cells using myeloablation with or without the addition of total body irradiation.  

It is a difficult treatment but the care I've received has been great.  You will have to talk with them but on my first glance you may not be a candidate for some of their protocols because of you having had splenectomy.  Again, this is only my thought.  

I found the research nurses very easy to work with and very fast at getting back to me.  As I recall, they asked for all of my records and previous treatment protocols and copies of scans.  After an initial review they invited me to come out for a workup prior to being accepted.  It moved pretty fast, especially for melanoma trials.  

Good luck and let me know if I can give you any further information.  

Troy

Josh, 

I went through a trial at NIH in May and have so far had a near complete response (fingers crossed for 2013).  They are doing a few variations on TIL/Adoptive cell transfer but their "standard" trial is referred to as the "randomized protocol".  Which is the infusion of TIL cells using myeloablation with or without the addition of total body irradiation.  

It is a difficult treatment but the care I've received has been great.  You will have to talk with them but on my first glance you may not be a candidate for some of their protocols because of you having had splenectomy.  Again, this is only my thought.  

I found the research nurses very easy to work with and very fast at getting back to me.  As I recall, they asked for all of my records and previous treatment protocols and copies of scans.  After an initial review they invited me to come out for a workup prior to being accepted.  It moved pretty fast, especially for melanoma trials.  

Good luck and let me know if I can give you any further information.  

Troy

Hi, Josh,

I'm a long term survivor of Dr. Rosenberg's trials.  Of course, I just did IL-2 alone, and the trials have evolved a great deal since then, but it's now been over 20 years that I've been NED after multiple lung and sub-q mets.  I always felt that the team at NIH took great care of me.

Best wishes to you in your journey.

Rick in NC

Hi, Josh,

I'm a long term survivor of Dr. Rosenberg's trials.  Of course, I just did IL-2 alone, and the trials have evolved a great deal since then, but it's now been over 20 years that I've been NED after multiple lung and sub-q mets.  I always felt that the team at NIH took great care of me.

Best wishes to you in your journey.

Rick in NC

Hi, Josh,

I'm a long term survivor of Dr. Rosenberg's trials.  Of course, I just did IL-2 alone, and the trials have evolved a great deal since then, but it's now been over 20 years that I've been NED after multiple lung and sub-q mets.  I always felt that the team at NIH took great care of me.

Best wishes to you in your journey.

Rick in NC

A melanoma patient going through the TIL treatment at Moffitt with Dr. Weber right now, is blogging his experience for the Philadelphia Inquirer. He's due to get his expanded T-cells reinfused in 2 weeks, on Jan. 7 2013. His second blog entry is here, "Patient #1 Medically Speaking".

His trial combines TIL treatment with Yervoy infusions as well. Per his blog, This treatment has never been tried in this order before – basically shoving the t-cell part in between the Yervoy treatments. So, as far as the doctors can tell, I'll be the first person on the planet to give this a shot – hence, "Patient #1." 

A melanoma patient going through the TIL treatment at Moffitt with Dr. Weber right now, is blogging his experience for the Philadelphia Inquirer. He's due to get his expanded T-cells reinfused in 2 weeks, on Jan. 7 2013. His second blog entry is here, "Patient #1 Medically Speaking".

His trial combines TIL treatment with Yervoy infusions as well. Per his blog, This treatment has never been tried in this order before – basically shoving the t-cell part in between the Yervoy treatments. So, as far as the doctors can tell, I'll be the first person on the planet to give this a shot – hence, "Patient #1." 

A melanoma patient going through the TIL treatment at Moffitt with Dr. Weber right now, is blogging his experience for the Philadelphia Inquirer. He's due to get his expanded T-cells reinfused in 2 weeks, on Jan. 7 2013. His second blog entry is here, "Patient #1 Medically Speaking".

His trial combines TIL treatment with Yervoy infusions as well. Per his blog, This treatment has never been tried in this order before – basically shoving the t-cell part in between the Yervoy treatments. So, as far as the doctors can tell, I'll be the first person on the planet to give this a shot – hence, "Patient #1." 

Hello,

I haven't been back on this forum in years. I am a Stage IV survivor of the adoptive cell TIL therapy. I recieved my treatment in October 2006. It was difficult but successful. My lung tumors disappeared in the first six months and my adrenal gland tumor reduced in size over the first year. The tumor did not change from June 2007 until June 2010 where it reduced in half. In December 2010 it was gone. I was classified in the published paper (2008) as a partial responder.

I return on an annual basis and Dr Rosenberg's staff check in with me periodically. It seems there are quite a few of us returning for follow-up monitoring. I don't know the numbers. I live a normal life. I caution you about interpreting treatment success or lack of it from the prevalence of responses in this forum. Once you are well, life takes over and you don't participate as frequently as you did when you were in treatment.

Dr. Rosenberg is simply amazing and the program is top-notch.

Hello,

I haven't been back on this forum in years. I am a Stage IV survivor of the adoptive cell TIL therapy. I recieved my treatment in October 2006. It was difficult but successful. My lung tumors disappeared in the first six months and my adrenal gland tumor reduced in size over the first year. The tumor did not change from June 2007 until June 2010 where it reduced in half. In December 2010 it was gone. I was classified in the published paper (2008) as a partial responder.

I return on an annual basis and Dr Rosenberg's staff check in with me periodically. It seems there are quite a few of us returning for follow-up monitoring. I don't know the numbers. I live a normal life. I caution you about interpreting treatment success or lack of it from the prevalence of responses in this forum. Once you are well, life takes over and you don't participate as frequently as you did when you were in treatment.

Dr. Rosenberg is simply amazing and the program is top-notch.

Hello,

I haven't been back on this forum in years. I am a Stage IV survivor of the adoptive cell TIL therapy. I recieved my treatment in October 2006. It was difficult but successful. My lung tumors disappeared in the first six months and my adrenal gland tumor reduced in size over the first year. The tumor did not change from June 2007 until June 2010 where it reduced in half. In December 2010 it was gone. I was classified in the published paper (2008) as a partial responder.

I return on an annual basis and Dr Rosenberg's staff check in with me periodically. It seems there are quite a few of us returning for follow-up monitoring. I don't know the numbers. I live a normal life. I caution you about interpreting treatment success or lack of it from the prevalence of responses in this forum. Once you are well, life takes over and you don't participate as frequently as you did when you were in treatment.

Dr. Rosenberg is simply amazing and the program is top-notch.

Interesting thread/conversation.

If I may, let me interject some perspective.

In 1987, when I was diagnosed Stage 3, unknown primary, I was desperate for not only answers but a way forward.

There were, at that  time, only five people in the United States that could truly be considered to have any relevant clinical and demostrative interest and experience  with  Melanoma.  Rosenberg was one of them, and I saw him. as well  as three others of that five.

.Say what you want, think what you want, but where ever you go, there willl always be an insitutional bias.  NIH is no different.

I can hoestly say though, that without Rosenberg's push of almost 30 years, melanoma would still be an orphan disease.

One more thing…………It is YOUR Chance and therefore your CHOICE about what is best for you.

It constantly, over the years, never ceases to amaze me how people make medical decisions out of uncertainity and innuendo and seek group hugs to support it, rather than actually working the problem presented.

Yeah, I know, not popular thinking and I come across as mean.  Dial up Melanoma  and see what it says.

Cheers,

Charlie S

Interesting thread/conversation.

If I may, let me interject some perspective.

In 1987, when I was diagnosed Stage 3, unknown primary, I was desperate for not only answers but a way forward.

There were, at that  time, only five people in the United States that could truly be considered to have any relevant clinical and demostrative interest and experience  with  Melanoma.  Rosenberg was one of them, and I saw him. as well  as three others of that five.

.Say what you want, think what you want, but where ever you go, there willl always be an insitutional bias.  NIH is no different.

I can hoestly say though, that without Rosenberg's push of almost 30 years, melanoma would still be an orphan disease.

One more thing…………It is YOUR Chance and therefore your CHOICE about what is best for you.

It constantly, over the years, never ceases to amaze me how people make medical decisions out of uncertainity and innuendo and seek group hugs to support it, rather than actually working the problem presented.

Yeah, I know, not popular thinking and I come across as mean.  Dial up Melanoma  and see what it says.

Cheers,

Charlie S

Interesting thread/conversation.

If I may, let me interject some perspective.

In 1987, when I was diagnosed Stage 3, unknown primary, I was desperate for not only answers but a way forward.

There were, at that  time, only five people in the United States that could truly be considered to have any relevant clinical and demostrative interest and experience  with  Melanoma.  Rosenberg was one of them, and I saw him. as well  as three others of that five.

.Say what you want, think what you want, but where ever you go, there willl always be an insitutional bias.  NIH is no different.

I can hoestly say though, that without Rosenberg's push of almost 30 years, melanoma would still be an orphan disease.

One more thing…………It is YOUR Chance and therefore your CHOICE about what is best for you.

It constantly, over the years, never ceases to amaze me how people make medical decisions out of uncertainity and innuendo and seek group hugs to support it, rather than actually working the problem presented.

Yeah, I know, not popular thinking and I come across as mean.  Dial up Melanoma  and see what it says.

Cheers,

Charlie S