› Forums › General Melanoma Community › Opinions about NIH/NCI treatments?
- This topic has 78 replies, 12 voices, and was last updated 11 years, 6 months ago by
Josh.
- Post
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- December 16, 2012 at 9:20 pm
Hello All,
Hello All,
I'm considering one the Dr. Rosenberg adoptive cell therapies offered at the NIH that probably many of us have heard about. Both my current oncologist at Sloan Kettering and my previous one at SDSU say that Rosenberg's adoptive cell therapy trials are the best clinical trials out there right now, however, I've noticed on this forum that other than Warren, nobody has good things to say about the longer-term benefits of these trials. To be clear, I haven't yet had the blood test to see if I qualify for one of these trials and I know that they offer many different trials, but Merk's anti pd-1 drug isn't working for me, so I need to decide on a next step. Considering that Dr. Rosenberg has been doing these trials for a very long time, I'm asking to hear from some long-term survivors or friends/families of long-term survivors. There are lots of anti pd-1 NED folks on this forum, but any Dr. Rosenberg NED's out there? If not, does anybody have opinions why my two great oncologists like these trials so much? Thanks a lot, everyone!
- Replies
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- December 16, 2012 at 10:27 pm
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.
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- December 16, 2012 at 10:27 pm
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.
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- December 16, 2012 at 10:27 pm
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.
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- December 17, 2012 at 12:14 am
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.
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- December 17, 2012 at 12:28 am
Hi A.,
Thanks a lot for the response. I'm not completely sure why different oncologists are fans of Dr. Rosenberg's work if the treatment itself is so taxing and the results not great. I'm definitely curious whether Dr. Rosenberg has numbers which contradict what we see on this forum.
I don't know for certain that the anti pd-1 drug isn't working, however a few symptoms lead me to believe that it isn't. For instance, my knee, which was previously stable, has gone nuts in the 8 weeks I've been on the drug. Also, I've begun to get the night sweats, something I've only had during "cancer times," and I've developed a 24/7 cough, again someting I've previously had during times when the cancer was winning. I'm seeing Dr. Wolchok this week where I will probably get my 3rd infusion of the pd-1 drug. We'll most likely decide then what to do next.
Thanks again for the information. I really appreciate it!
Josh
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- December 17, 2012 at 12:28 am
Hi A.,
Thanks a lot for the response. I'm not completely sure why different oncologists are fans of Dr. Rosenberg's work if the treatment itself is so taxing and the results not great. I'm definitely curious whether Dr. Rosenberg has numbers which contradict what we see on this forum.
I don't know for certain that the anti pd-1 drug isn't working, however a few symptoms lead me to believe that it isn't. For instance, my knee, which was previously stable, has gone nuts in the 8 weeks I've been on the drug. Also, I've begun to get the night sweats, something I've only had during "cancer times," and I've developed a 24/7 cough, again someting I've previously had during times when the cancer was winning. I'm seeing Dr. Wolchok this week where I will probably get my 3rd infusion of the pd-1 drug. We'll most likely decide then what to do next.
Thanks again for the information. I really appreciate it!
Josh
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- December 17, 2012 at 12:28 am
Hi A.,
Thanks a lot for the response. I'm not completely sure why different oncologists are fans of Dr. Rosenberg's work if the treatment itself is so taxing and the results not great. I'm definitely curious whether Dr. Rosenberg has numbers which contradict what we see on this forum.
I don't know for certain that the anti pd-1 drug isn't working, however a few symptoms lead me to believe that it isn't. For instance, my knee, which was previously stable, has gone nuts in the 8 weeks I've been on the drug. Also, I've begun to get the night sweats, something I've only had during "cancer times," and I've developed a 24/7 cough, again someting I've previously had during times when the cancer was winning. I'm seeing Dr. Wolchok this week where I will probably get my 3rd infusion of the pd-1 drug. We'll most likely decide then what to do next.
Thanks again for the information. I really appreciate it!
Josh
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- December 23, 2012 at 1:38 am
Hi Josh,
No, I was asking for any survivors who did this treatment as it is offered in many places by other Dr.'s. I was trying to find accuracy in the claim that TIL has helped very few. I need to know too as I might go down this treatment path soon.
Swanee
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- December 23, 2012 at 1:38 am
Hi Josh,
No, I was asking for any survivors who did this treatment as it is offered in many places by other Dr.'s. I was trying to find accuracy in the claim that TIL has helped very few. I need to know too as I might go down this treatment path soon.
Swanee
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- December 23, 2012 at 1:38 am
Hi Josh,
No, I was asking for any survivors who did this treatment as it is offered in many places by other Dr.'s. I was trying to find accuracy in the claim that TIL has helped very few. I need to know too as I might go down this treatment path soon.
Swanee
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- January 7, 2013 at 6:35 am
All the TIL/ACT trials are not the same. There are different protocols and treatments involved in the different trials. Dr Rosenberg has had successess, but it is a hard path to follow and the status of entering participants lowers the success rate. The processss needs much fine tuning and it is still had to tell who are the best candidates for the procedure.
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- January 7, 2013 at 6:35 am
All the TIL/ACT trials are not the same. There are different protocols and treatments involved in the different trials. Dr Rosenberg has had successess, but it is a hard path to follow and the status of entering participants lowers the success rate. The processss needs much fine tuning and it is still had to tell who are the best candidates for the procedure.
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- January 7, 2013 at 6:35 am
All the TIL/ACT trials are not the same. There are different protocols and treatments involved in the different trials. Dr Rosenberg has had successess, but it is a hard path to follow and the status of entering participants lowers the success rate. The processss needs much fine tuning and it is still had to tell who are the best candidates for the procedure.
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- December 17, 2012 at 12:14 am
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.
-
- December 17, 2012 at 12:14 am
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.
-
- December 17, 2012 at 12:29 am
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) -
- December 17, 2012 at 12:29 am
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)-
- December 17, 2012 at 12:41 am
Questions–IL2 has been around a very long time. Does anyone know how if differs in these trials at NIH?
Does Sloan Kettering offer similar trials?
Thanks.
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- December 17, 2012 at 12:41 am
Questions–IL2 has been around a very long time. Does anyone know how if differs in these trials at NIH?
Does Sloan Kettering offer similar trials?
Thanks.
-
- December 17, 2012 at 5:40 am
Hi KSG,
In answer to your question (and please keep in mind that I'm not an expert), my understanding is that IL2 is a drug given to fight melanoma. As I further understand, it's not a very pleasant drug to receive. The difference between straight IL2 and the adoptive cell therapies being offered at the NIH (and Anderson, I think) is that adoptive cell therapy removes some of your tumor, grows cells with it, and then puts those cells back into your body (once your immune system has been surpressed). IL2 is used in this process, however it's just one part of the process. There are often other chemos, other types of radiation, and of course the newly grown cells. Stright IL2 is simply an infusion. Regarding your second question, I don't believe that Sloan Kettering offers IL2 and I know that they don't offer adoptive cell therapy. Best of luck!
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- December 17, 2012 at 5:40 am
Hi KSG,
In answer to your question (and please keep in mind that I'm not an expert), my understanding is that IL2 is a drug given to fight melanoma. As I further understand, it's not a very pleasant drug to receive. The difference between straight IL2 and the adoptive cell therapies being offered at the NIH (and Anderson, I think) is that adoptive cell therapy removes some of your tumor, grows cells with it, and then puts those cells back into your body (once your immune system has been surpressed). IL2 is used in this process, however it's just one part of the process. There are often other chemos, other types of radiation, and of course the newly grown cells. Stright IL2 is simply an infusion. Regarding your second question, I don't believe that Sloan Kettering offers IL2 and I know that they don't offer adoptive cell therapy. Best of luck!
-
- December 17, 2012 at 5:40 am
Hi KSG,
In answer to your question (and please keep in mind that I'm not an expert), my understanding is that IL2 is a drug given to fight melanoma. As I further understand, it's not a very pleasant drug to receive. The difference between straight IL2 and the adoptive cell therapies being offered at the NIH (and Anderson, I think) is that adoptive cell therapy removes some of your tumor, grows cells with it, and then puts those cells back into your body (once your immune system has been surpressed). IL2 is used in this process, however it's just one part of the process. There are often other chemos, other types of radiation, and of course the newly grown cells. Stright IL2 is simply an infusion. Regarding your second question, I don't believe that Sloan Kettering offers IL2 and I know that they don't offer adoptive cell therapy. Best of luck!
-
- December 17, 2012 at 12:41 am
Questions–IL2 has been around a very long time. Does anyone know how if differs in these trials at NIH?
Does Sloan Kettering offer similar trials?
Thanks.
-
- December 17, 2012 at 12:46 am
One more thing to read, is Troy’s NIH TIL experience! Put in Almost There Troy, in the search section on this site, and it will lead you to his entry in December with very good news for him! Be positive about all the avenues we have to fight this disease. Valerie -
- December 17, 2012 at 12:46 am
One more thing to read, is Troy’s NIH TIL experience! Put in Almost There Troy, in the search section on this site, and it will lead you to his entry in December with very good news for him! Be positive about all the avenues we have to fight this disease. Valerie -
- December 17, 2012 at 12:46 am
One more thing to read, is Troy’s NIH TIL experience! Put in Almost There Troy, in the search section on this site, and it will lead you to his entry in December with very good news for him! Be positive about all the avenues we have to fight this disease. Valerie -
- December 18, 2012 at 3:42 am
Hi all,
To answer your question, sloan does not offer IL-2 , however they refer people to Yale-New Haven for that treatment. Dr Wolchok of sloan works with the wonderful Dr. Mario Sznol at Yale. I did IL-2 w/Dr Sznol and I can’t say enough things about him or the facility.
Karen -
- December 18, 2012 at 3:42 am
Hi all,
To answer your question, sloan does not offer IL-2 , however they refer people to Yale-New Haven for that treatment. Dr Wolchok of sloan works with the wonderful Dr. Mario Sznol at Yale. I did IL-2 w/Dr Sznol and I can’t say enough things about him or the facility.
Karen -
- December 18, 2012 at 3:42 am
Hi all,
To answer your question, sloan does not offer IL-2 , however they refer people to Yale-New Haven for that treatment. Dr Wolchok of sloan works with the wonderful Dr. Mario Sznol at Yale. I did IL-2 w/Dr Sznol and I can’t say enough things about him or the facility.
Karen
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- December 17, 2012 at 12:29 am
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) -
- December 18, 2012 at 6:11 pm
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
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- December 18, 2012 at 6:11 pm
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
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- December 18, 2012 at 6:36 pm
Josh,
I should also mention. There are some people who post on this board and some oncologists out there who hold a negative opinion about NIH/NCI and Dr. Rosenberg – some very strongly negative. I would encourage you to gather as much data as possible and form your own opinion. I believe their response rates have been shown to be superior to other treatments (not counting PD-1 trials because the data is still coming) while offering long term durability.
Everyone of us comes to this disease differently. Some have a very aggressive and advanced disease, some have less aggressive and less advanced disease and we all get metastasis in different places at different numbers. For these reasons it has been one of the most difficult cancers to treat and, as we are learning, there is no "one size fits all" treatment – yet.
Just because some people don't qualify for a treatment protocol or a trial or it doesn't work for someone doesn't make it irrelevant or not worth doing. While we are all desperately looking to have success with whatever trial or treatment we try, at the very least we have to remember we are contributing to finding and end to metastatic melanoma.
Just my 2 cents –
Truly, all the best.
Troy
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- December 18, 2012 at 6:36 pm
Josh,
I should also mention. There are some people who post on this board and some oncologists out there who hold a negative opinion about NIH/NCI and Dr. Rosenberg – some very strongly negative. I would encourage you to gather as much data as possible and form your own opinion. I believe their response rates have been shown to be superior to other treatments (not counting PD-1 trials because the data is still coming) while offering long term durability.
Everyone of us comes to this disease differently. Some have a very aggressive and advanced disease, some have less aggressive and less advanced disease and we all get metastasis in different places at different numbers. For these reasons it has been one of the most difficult cancers to treat and, as we are learning, there is no "one size fits all" treatment – yet.
Just because some people don't qualify for a treatment protocol or a trial or it doesn't work for someone doesn't make it irrelevant or not worth doing. While we are all desperately looking to have success with whatever trial or treatment we try, at the very least we have to remember we are contributing to finding and end to metastatic melanoma.
Just my 2 cents –
Truly, all the best.
Troy
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- December 20, 2012 at 3:32 am
Hey Troy,
Thanks a lot for the information. I'm really happy that you've had such a great response to your NIH treatment. The two oncologists I've had seem to think that, assuming one doesn't respond to anti pd-1, Dr. Rosenberg's trials are the best trials out there, so I've been surprised to see almost-solely negative feedback about them here. I'll definitely do a lot of research if it looks like I may go that route. I hadn't considered the splenectomy, by the way. We'll have to see about that.
Thanks again, and best of luck staying healthy and happy!
Josh
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- December 20, 2012 at 3:32 am
Hey Troy,
Thanks a lot for the information. I'm really happy that you've had such a great response to your NIH treatment. The two oncologists I've had seem to think that, assuming one doesn't respond to anti pd-1, Dr. Rosenberg's trials are the best trials out there, so I've been surprised to see almost-solely negative feedback about them here. I'll definitely do a lot of research if it looks like I may go that route. I hadn't considered the splenectomy, by the way. We'll have to see about that.
Thanks again, and best of luck staying healthy and happy!
Josh
-
- December 20, 2012 at 3:32 am
Hey Troy,
Thanks a lot for the information. I'm really happy that you've had such a great response to your NIH treatment. The two oncologists I've had seem to think that, assuming one doesn't respond to anti pd-1, Dr. Rosenberg's trials are the best trials out there, so I've been surprised to see almost-solely negative feedback about them here. I'll definitely do a lot of research if it looks like I may go that route. I hadn't considered the splenectomy, by the way. We'll have to see about that.
Thanks again, and best of luck staying healthy and happy!
Josh
-
- December 18, 2012 at 6:36 pm
Josh,
I should also mention. There are some people who post on this board and some oncologists out there who hold a negative opinion about NIH/NCI and Dr. Rosenberg – some very strongly negative. I would encourage you to gather as much data as possible and form your own opinion. I believe their response rates have been shown to be superior to other treatments (not counting PD-1 trials because the data is still coming) while offering long term durability.
Everyone of us comes to this disease differently. Some have a very aggressive and advanced disease, some have less aggressive and less advanced disease and we all get metastasis in different places at different numbers. For these reasons it has been one of the most difficult cancers to treat and, as we are learning, there is no "one size fits all" treatment – yet.
Just because some people don't qualify for a treatment protocol or a trial or it doesn't work for someone doesn't make it irrelevant or not worth doing. While we are all desperately looking to have success with whatever trial or treatment we try, at the very least we have to remember we are contributing to finding and end to metastatic melanoma.
Just my 2 cents –
Truly, all the best.
Troy
-
- December 18, 2012 at 6:11 pm
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
-
- December 19, 2012 at 12:16 am
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
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- December 19, 2012 at 12:16 am
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
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- January 7, 2013 at 6:45 am
Good to see you posting Rick, enjoyed meeting you at Chapel Hill. And yes, isn't IL-2 great? (As long as it is received from an experienced team!) So far even the new drugs haven't really proven to have a higher success rate against across the board Melanoma. Just wish they could tell in advance who it is the least/most likely to respond to it. It keep me going ujntil something else came long.
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- January 7, 2013 at 6:45 am
Good to see you posting Rick, enjoyed meeting you at Chapel Hill. And yes, isn't IL-2 great? (As long as it is received from an experienced team!) So far even the new drugs haven't really proven to have a higher success rate against across the board Melanoma. Just wish they could tell in advance who it is the least/most likely to respond to it. It keep me going ujntil something else came long.
-
- January 7, 2013 at 6:45 am
Good to see you posting Rick, enjoyed meeting you at Chapel Hill. And yes, isn't IL-2 great? (As long as it is received from an experienced team!) So far even the new drugs haven't really proven to have a higher success rate against across the board Melanoma. Just wish they could tell in advance who it is the least/most likely to respond to it. It keep me going ujntil something else came long.
-
- December 19, 2012 at 12:16 am
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
-
- December 23, 2012 at 5:01 pm
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."
-
- December 23, 2012 at 5:01 pm
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."
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- January 6, 2013 at 9:17 pm
Hey Amy,
I'm assuming that you're the Amy who's H's friend and T's sister. In which case, you're cancer-forum-stalking me, which is some pretty sick sh_t. ๐ I'm actually doing a bit better, so aren't sure whether the pd-1 drug is working. I'm getting scanned in 3 and half weeks, and, assuming I feel then how I feel now, it'll be the first scan I've ever had where I have no idea how I'm doing. Normally, I at least have an opinion, like, "this'll be a great scan," and regardless of whether I was right, at least I had an idea. This time, no idea. Anyway, I hope T's doing really well! Take care!
Josh
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- January 6, 2013 at 9:17 pm
Hey Amy,
I'm assuming that you're the Amy who's H's friend and T's sister. In which case, you're cancer-forum-stalking me, which is some pretty sick sh_t. ๐ I'm actually doing a bit better, so aren't sure whether the pd-1 drug is working. I'm getting scanned in 3 and half weeks, and, assuming I feel then how I feel now, it'll be the first scan I've ever had where I have no idea how I'm doing. Normally, I at least have an opinion, like, "this'll be a great scan," and regardless of whether I was right, at least I had an idea. This time, no idea. Anyway, I hope T's doing really well! Take care!
Josh
-
- January 6, 2013 at 9:17 pm
Hey Amy,
I'm assuming that you're the Amy who's H's friend and T's sister. In which case, you're cancer-forum-stalking me, which is some pretty sick sh_t. ๐ I'm actually doing a bit better, so aren't sure whether the pd-1 drug is working. I'm getting scanned in 3 and half weeks, and, assuming I feel then how I feel now, it'll be the first scan I've ever had where I have no idea how I'm doing. Normally, I at least have an opinion, like, "this'll be a great scan," and regardless of whether I was right, at least I had an idea. This time, no idea. Anyway, I hope T's doing really well! Take care!
Josh
-
- December 23, 2012 at 5:01 pm
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."
-
- July 16, 2013 at 3:47 pm
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.
-
- July 16, 2013 at 3:47 pm
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.
-
- July 16, 2013 at 3:47 pm
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.
-
- July 18, 2013 at 1:56 am
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
-
- July 18, 2013 at 1:56 am
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
-
- July 18, 2013 at 1:56 am
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
-
- July 21, 2013 at 7:50 pm
Thanks a lot for the response, Lizzie. I really appreciate it and am grateful for the information. I'm actually still on Merck's anti pd-1 drug. Seems to be working well insofar as everything's stable and I feel downright perfect.
Best of luck and health to you and evreyone out there!
Josh
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- July 21, 2013 at 7:50 pm
Thanks a lot for the response, Lizzie. I really appreciate it and am grateful for the information. I'm actually still on Merck's anti pd-1 drug. Seems to be working well insofar as everything's stable and I feel downright perfect.
Best of luck and health to you and evreyone out there!
Josh
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- July 21, 2013 at 7:50 pm
Thanks a lot for the response, Lizzie. I really appreciate it and am grateful for the information. I'm actually still on Merck's anti pd-1 drug. Seems to be working well insofar as everything's stable and I feel downright perfect.
Best of luck and health to you and evreyone out there!
Josh
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