› Forums › General Melanoma Community › A WARNIING FOR ANYONE DECIDING WHICH THERAPIES TO CHOSE FROM
- This topic has 42 replies, 9 voices, and was last updated 12 years, 11 months ago by
concernedaughter2011.
- Post
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- June 7, 2012 at 1:31 am
I CANNOT THINK OF ANYBODY WHO SURVIVED AUTOLOGOUS T-CELL THERAPY AT THE NIH.
INVOLVING DR ROSENBERG. I CAN THINK OF A LOT OF GOOD PEOPLE WHO HAVE PASSED ON DUE TO IT.
IT DOESN'T LOOK ANY ARE LEFT, BUT IF YOU ARE CONSIDERING THIS AS AN OPTION, DON'T DO IT.
I CANNOT THINK OF ANYBODY WHO SURVIVED AUTOLOGOUS T-CELL THERAPY AT THE NIH.
INVOLVING DR ROSENBERG. I CAN THINK OF A LOT OF GOOD PEOPLE WHO HAVE PASSED ON DUE TO IT.
IT DOESN'T LOOK ANY ARE LEFT, BUT IF YOU ARE CONSIDERING THIS AS AN OPTION, DON'T DO IT.
- Replies
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- June 7, 2012 at 2:07 am
Hi Jag…Just read your whole profile, congratulations on your new arrival! How very exciting for you! Hope all is well. I have read your posts and replies many times and have always appreciated them and am glad to have finally took the time to read your profile. Wow, you have been a true fighter on this journey! I am curious about your strong opinion about TILS. My husband was very close to participating in this study. Thanks…Melissa
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- June 7, 2012 at 2:07 am
Hi Jag…Just read your whole profile, congratulations on your new arrival! How very exciting for you! Hope all is well. I have read your posts and replies many times and have always appreciated them and am glad to have finally took the time to read your profile. Wow, you have been a true fighter on this journey! I am curious about your strong opinion about TILS. My husband was very close to participating in this study. Thanks…Melissa
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- June 7, 2012 at 2:07 am
Hi Jag…Just read your whole profile, congratulations on your new arrival! How very exciting for you! Hope all is well. I have read your posts and replies many times and have always appreciated them and am glad to have finally took the time to read your profile. Wow, you have been a true fighter on this journey! I am curious about your strong opinion about TILS. My husband was very close to participating in this study. Thanks…Melissa
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- June 7, 2012 at 8:17 am
Hi Jag,
I was wondering how big your sample size is, or how may people you have known that have undergone the therapy?
The treatment has evolved significantly over the past decade. There is evidence that some people have achieved complete, ongoing remissions, such as here;
http://www.ncbi.nlm.nih.gov/pubmed/21498393
and
http://www.ncbi.nlm.nih.gov/pubmed/21808266and
and
http://www.ncbi.nlm.nih.gov/pubmed/20406835
among others.
Two of the above articles are recent, and presumambly many of the patients who have survived are still around.
I too am wondering about your opposition to this?
Ben.
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- June 7, 2012 at 8:17 am
Hi Jag,
I was wondering how big your sample size is, or how may people you have known that have undergone the therapy?
The treatment has evolved significantly over the past decade. There is evidence that some people have achieved complete, ongoing remissions, such as here;
http://www.ncbi.nlm.nih.gov/pubmed/21498393
and
http://www.ncbi.nlm.nih.gov/pubmed/21808266and
and
http://www.ncbi.nlm.nih.gov/pubmed/20406835
among others.
Two of the above articles are recent, and presumambly many of the patients who have survived are still around.
I too am wondering about your opposition to this?
Ben.
-
- June 7, 2012 at 8:17 am
Hi Jag,
I was wondering how big your sample size is, or how may people you have known that have undergone the therapy?
The treatment has evolved significantly over the past decade. There is evidence that some people have achieved complete, ongoing remissions, such as here;
http://www.ncbi.nlm.nih.gov/pubmed/21498393
and
http://www.ncbi.nlm.nih.gov/pubmed/21808266and
and
http://www.ncbi.nlm.nih.gov/pubmed/20406835
among others.
Two of the above articles are recent, and presumambly many of the patients who have survived are still around.
I too am wondering about your opposition to this?
Ben.
-
- June 7, 2012 at 10:33 am
My husband just completed the protocol with ACT and IL2 at Moffit in Tampa. He was the 12th to go through. 10 are still alive. He has seen disappearance of tumors we could see and due for a scan in three weeks to see how it worked with internal tumors. He chose this treatment as it gave him a chance for two years as opposed to maybe 6 months with the other options. (ipi or Braf or chemo). when this treatment protocol began he was told less than 60 days with no treatment. The side effects were bad for the week of the IL2 but he is almost back to normal and the baseball size tumor on his arm is gone so wondering why you so strongly against
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- June 7, 2012 at 10:33 am
My husband just completed the protocol with ACT and IL2 at Moffit in Tampa. He was the 12th to go through. 10 are still alive. He has seen disappearance of tumors we could see and due for a scan in three weeks to see how it worked with internal tumors. He chose this treatment as it gave him a chance for two years as opposed to maybe 6 months with the other options. (ipi or Braf or chemo). when this treatment protocol began he was told less than 60 days with no treatment. The side effects were bad for the week of the IL2 but he is almost back to normal and the baseball size tumor on his arm is gone so wondering why you so strongly against
-
- June 7, 2012 at 10:33 am
My husband just completed the protocol with ACT and IL2 at Moffit in Tampa. He was the 12th to go through. 10 are still alive. He has seen disappearance of tumors we could see and due for a scan in three weeks to see how it worked with internal tumors. He chose this treatment as it gave him a chance for two years as opposed to maybe 6 months with the other options. (ipi or Braf or chemo). when this treatment protocol began he was told less than 60 days with no treatment. The side effects were bad for the week of the IL2 but he is almost back to normal and the baseball size tumor on his arm is gone so wondering why you so strongly against
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- June 7, 2012 at 11:01 am
I know we haven't heard many success stories on the board but I'm sure we don't hear of all the patients who are doing well with TIL.
Congratulations on your baby! I just read your profile, I'm glad to hear you are doing so well it gives us all encouragement.
Rebecca
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- June 7, 2012 at 11:01 am
I know we haven't heard many success stories on the board but I'm sure we don't hear of all the patients who are doing well with TIL.
Congratulations on your baby! I just read your profile, I'm glad to hear you are doing so well it gives us all encouragement.
Rebecca
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- June 7, 2012 at 11:01 am
I know we haven't heard many success stories on the board but I'm sure we don't hear of all the patients who are doing well with TIL.
Congratulations on your baby! I just read your profile, I'm glad to hear you are doing so well it gives us all encouragement.
Rebecca
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- June 7, 2012 at 1:05 pm
Jag, First of all big congratulations on your new baby, what JOY! Second, you are our hero, fighting thru brain mets and still doing so well, being NED, truly amazing. We want to be you! My husband has stable brain mets, and your story gives us hope! However, my husband also has several areas of body mets and currently is fighting the good fight! Phil has been in the battle over 2 1/2 years and has done three surgeries, a year of interferon, some leukine, six rounds of biochemo, and now TIL (got his cells back May 9th) at MDAnderson in Houston, which also included 18 doses of high dose IL2 in his two rounds. HE IS A FIGHTER, and is actually doing really well, returning to work this coming Monday! Sometimes, we feel like we have thrown the kitchen sink at his cancer, hoping something gives durable results. Such is life in this battle! We have seen people where TIL works and seen people where TIL doesn’t work, just like ALL the melanoma treatments, very individual responses to each protocol. The cool thing about TIL, and what we are hoping for is that Phil has some positive response, and we get a break from treatment for awhile.We don’t regret any of our treatment moves, and we won’t regret doing TIL, even if it doesn’t work for us. We took the chance, just like all of us have, to do treatments with the POSSIBILITY of positive response, and to have a great summer with our young children. Phil knows we are biding time, hoping to see anti PD1 trials expand, etc. but in the meantime, he has been around for another school year, seen the kids thru another Christmas and birthdays, taught them both how to ride their bikes, took them to amusement parks, showed our son the Lincoln Memorial, and had many, many nice lazy days with them doing normal activities at home. So, I personally wouldn’t tell anyone not to do a specific treatment, melanoma is a crazy unpredictable beast, what works for one, may or may not work for another. I would tell people to fight their own fight, and feel comfortable with their decisions. So Jag, we can disagree with you on TIL, but we really do have a soft spot for you and your family, and wish you many, many years of your child’s laughter! God bless, Valerie (Phil’s wife)
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- June 7, 2012 at 4:19 pm
Thank you Valerie, I appreciate your sentiment, I suppose my dealings w/the NIH have left me with a bad taste in my mouth. They literally called my wife the day before I was to have my whole lung removed and lectured her on why it was a bad decision-she never told me about it, until recently. It was a hard decision to make in the first place. I do hope Phil does well with his therapy, and with the help of MD Anderson, you are in much better hands. The earlier treatments that essentially were bone marrow transplants (cyclophosphamide + whole body radiation) -my understanding anyway- were very difficult on a patients and may actually have caused more harm than good. I think of people like HimynameisKevin who go through it and fail right from the start and I cringe, knowing that it might actually hurt their immune system. The thing about the NIH is that they tend to choose the best crop of patients-most likely to survive-to start these treatments with-if they are too weak they drop them without considering the damage they have done. If you look at a quote from one of the articles referenced above, " (TIL) has shown promising results in metastatic melanoma patients. Although objective response rates of over 50% have been reported, disadvantages of this approach are the labor-intensive TIL production and a very high drop-out rate of enrolled patients, limiting its widespread applicability-posted by Ben P. The data is not at all based on the people who enter the trial, it is based on people who have completed it. Given the fact that Phil is doing well, and has made it through so far, is very promising. My only problem is with the people who don't make it not being represented in the numbers-actually having their immune system beat up.
I am glad to hear responses from people that are doing this and are actually doing well. I have posted this exact question before and nobody responded, so I just assumed all had passed on.
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- June 7, 2012 at 10:57 pm
jag, I understand what you mean better now. My husband Mike passed all the pre tests and had 4 days of chemo to kill his immune system. 5th day he was so sick and his liver function number was sky high. They decided to let him skip the chemo for one day and see where the liver number was. He would have been out of the protocol if the number didn't improve so no immune system and no real help for melanoma and two months of testing, til growth, etc "wasted". We had a real sinking feeling. Luckily his number improved and we continued and definitely have a strong partial response and praying for the same for the internal mets. Moffitt doctors were great. I can't say enough good about them. They are looking to start a new protocol there with Til and one of the Braf drugs since they think it will be less side effects than il2.
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- June 8, 2012 at 11:32 am
Exactly, after all of that, he wouldn't even count as "part of the study" I can't think of any other trial that makes patients go through all of that and doesn't count them in the statistics. For most drugs, you are given a chance and then get dropped if you develop a brain met or something which excludes you from the study, for TIL, you can get excluded just for failure to be able to produce tumor infiltrating lymphocytes, and this study has been going on for years, they say it is "evolving". I'm not saying it doesn't work, I just don't think people are given a full understanding of the price they might have to pay by the people running the trials, I'm not trying to take away hope, I'm just trying to point out the not so obvious. A better question would be how many people have been dropped from TIL and survived afterwords?
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- June 8, 2012 at 11:32 am
Exactly, after all of that, he wouldn't even count as "part of the study" I can't think of any other trial that makes patients go through all of that and doesn't count them in the statistics. For most drugs, you are given a chance and then get dropped if you develop a brain met or something which excludes you from the study, for TIL, you can get excluded just for failure to be able to produce tumor infiltrating lymphocytes, and this study has been going on for years, they say it is "evolving". I'm not saying it doesn't work, I just don't think people are given a full understanding of the price they might have to pay by the people running the trials, I'm not trying to take away hope, I'm just trying to point out the not so obvious. A better question would be how many people have been dropped from TIL and survived afterwords?
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- June 8, 2012 at 11:52 am
TILs are successfully generated in approx 80-90% of participants. I am also quite sure that patients to not undergo lymphodepletion unless the TILs are successfully created.
Unfortunately, the long term response rates for any treatment (other than complete metastasectomy) are dismal. It's a pretty sad state when response rates of less than 50% are considered hopeful. In any case, it seems to me that if you are fit enough to the rough stuff that they put your body through, that it does offer more hope than the vast majority of treatments (including Ipi), even accounting for biases etc.
This is a good first-hand commentaryfrom this site;
http://www.melanoma.org/community/patient-stories/bob-heffernan
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- June 8, 2012 at 11:52 am
TILs are successfully generated in approx 80-90% of participants. I am also quite sure that patients to not undergo lymphodepletion unless the TILs are successfully created.
Unfortunately, the long term response rates for any treatment (other than complete metastasectomy) are dismal. It's a pretty sad state when response rates of less than 50% are considered hopeful. In any case, it seems to me that if you are fit enough to the rough stuff that they put your body through, that it does offer more hope than the vast majority of treatments (including Ipi), even accounting for biases etc.
This is a good first-hand commentaryfrom this site;
http://www.melanoma.org/community/patient-stories/bob-heffernan
-
- June 8, 2012 at 11:52 am
TILs are successfully generated in approx 80-90% of participants. I am also quite sure that patients to not undergo lymphodepletion unless the TILs are successfully created.
Unfortunately, the long term response rates for any treatment (other than complete metastasectomy) are dismal. It's a pretty sad state when response rates of less than 50% are considered hopeful. In any case, it seems to me that if you are fit enough to the rough stuff that they put your body through, that it does offer more hope than the vast majority of treatments (including Ipi), even accounting for biases etc.
This is a good first-hand commentaryfrom this site;
http://www.melanoma.org/community/patient-stories/bob-heffernan
-
- June 8, 2012 at 11:32 am
Exactly, after all of that, he wouldn't even count as "part of the study" I can't think of any other trial that makes patients go through all of that and doesn't count them in the statistics. For most drugs, you are given a chance and then get dropped if you develop a brain met or something which excludes you from the study, for TIL, you can get excluded just for failure to be able to produce tumor infiltrating lymphocytes, and this study has been going on for years, they say it is "evolving". I'm not saying it doesn't work, I just don't think people are given a full understanding of the price they might have to pay by the people running the trials, I'm not trying to take away hope, I'm just trying to point out the not so obvious. A better question would be how many people have been dropped from TIL and survived afterwords?
-
- June 7, 2012 at 10:57 pm
jag, I understand what you mean better now. My husband Mike passed all the pre tests and had 4 days of chemo to kill his immune system. 5th day he was so sick and his liver function number was sky high. They decided to let him skip the chemo for one day and see where the liver number was. He would have been out of the protocol if the number didn't improve so no immune system and no real help for melanoma and two months of testing, til growth, etc "wasted". We had a real sinking feeling. Luckily his number improved and we continued and definitely have a strong partial response and praying for the same for the internal mets. Moffitt doctors were great. I can't say enough good about them. They are looking to start a new protocol there with Til and one of the Braf drugs since they think it will be less side effects than il2.
-
- June 7, 2012 at 10:57 pm
jag, I understand what you mean better now. My husband Mike passed all the pre tests and had 4 days of chemo to kill his immune system. 5th day he was so sick and his liver function number was sky high. They decided to let him skip the chemo for one day and see where the liver number was. He would have been out of the protocol if the number didn't improve so no immune system and no real help for melanoma and two months of testing, til growth, etc "wasted". We had a real sinking feeling. Luckily his number improved and we continued and definitely have a strong partial response and praying for the same for the internal mets. Moffitt doctors were great. I can't say enough good about them. They are looking to start a new protocol there with Til and one of the Braf drugs since they think it will be less side effects than il2.
-
- June 7, 2012 at 4:19 pm
Thank you Valerie, I appreciate your sentiment, I suppose my dealings w/the NIH have left me with a bad taste in my mouth. They literally called my wife the day before I was to have my whole lung removed and lectured her on why it was a bad decision-she never told me about it, until recently. It was a hard decision to make in the first place. I do hope Phil does well with his therapy, and with the help of MD Anderson, you are in much better hands. The earlier treatments that essentially were bone marrow transplants (cyclophosphamide + whole body radiation) -my understanding anyway- were very difficult on a patients and may actually have caused more harm than good. I think of people like HimynameisKevin who go through it and fail right from the start and I cringe, knowing that it might actually hurt their immune system. The thing about the NIH is that they tend to choose the best crop of patients-most likely to survive-to start these treatments with-if they are too weak they drop them without considering the damage they have done. If you look at a quote from one of the articles referenced above, " (TIL) has shown promising results in metastatic melanoma patients. Although objective response rates of over 50% have been reported, disadvantages of this approach are the labor-intensive TIL production and a very high drop-out rate of enrolled patients, limiting its widespread applicability-posted by Ben P. The data is not at all based on the people who enter the trial, it is based on people who have completed it. Given the fact that Phil is doing well, and has made it through so far, is very promising. My only problem is with the people who don't make it not being represented in the numbers-actually having their immune system beat up.
I am glad to hear responses from people that are doing this and are actually doing well. I have posted this exact question before and nobody responded, so I just assumed all had passed on.
-
- June 7, 2012 at 4:19 pm
Thank you Valerie, I appreciate your sentiment, I suppose my dealings w/the NIH have left me with a bad taste in my mouth. They literally called my wife the day before I was to have my whole lung removed and lectured her on why it was a bad decision-she never told me about it, until recently. It was a hard decision to make in the first place. I do hope Phil does well with his therapy, and with the help of MD Anderson, you are in much better hands. The earlier treatments that essentially were bone marrow transplants (cyclophosphamide + whole body radiation) -my understanding anyway- were very difficult on a patients and may actually have caused more harm than good. I think of people like HimynameisKevin who go through it and fail right from the start and I cringe, knowing that it might actually hurt their immune system. The thing about the NIH is that they tend to choose the best crop of patients-most likely to survive-to start these treatments with-if they are too weak they drop them without considering the damage they have done. If you look at a quote from one of the articles referenced above, " (TIL) has shown promising results in metastatic melanoma patients. Although objective response rates of over 50% have been reported, disadvantages of this approach are the labor-intensive TIL production and a very high drop-out rate of enrolled patients, limiting its widespread applicability-posted by Ben P. The data is not at all based on the people who enter the trial, it is based on people who have completed it. Given the fact that Phil is doing well, and has made it through so far, is very promising. My only problem is with the people who don't make it not being represented in the numbers-actually having their immune system beat up.
I am glad to hear responses from people that are doing this and are actually doing well. I have posted this exact question before and nobody responded, so I just assumed all had passed on.
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- June 24, 2012 at 7:10 pm
@Phil S (Valerie)
Hello, I just read your post here and wanted to speak with you about your TIL treatment at MDA. I am trying to get my mom into it. She is currently being treated for stage IV at UT Southwestern in Dallas. Is it possible for you to contact me? Thank you!
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- June 24, 2012 at 7:10 pm
@Phil S (Valerie)
Hello, I just read your post here and wanted to speak with you about your TIL treatment at MDA. I am trying to get my mom into it. She is currently being treated for stage IV at UT Southwestern in Dallas. Is it possible for you to contact me? Thank you!
-
- June 24, 2012 at 7:10 pm
@Phil S (Valerie)
Hello, I just read your post here and wanted to speak with you about your TIL treatment at MDA. I am trying to get my mom into it. She is currently being treated for stage IV at UT Southwestern in Dallas. Is it possible for you to contact me? Thank you!
-
- June 7, 2012 at 1:05 pm
Jag, First of all big congratulations on your new baby, what JOY! Second, you are our hero, fighting thru brain mets and still doing so well, being NED, truly amazing. We want to be you! My husband has stable brain mets, and your story gives us hope! However, my husband also has several areas of body mets and currently is fighting the good fight! Phil has been in the battle over 2 1/2 years and has done three surgeries, a year of interferon, some leukine, six rounds of biochemo, and now TIL (got his cells back May 9th) at MDAnderson in Houston, which also included 18 doses of high dose IL2 in his two rounds. HE IS A FIGHTER, and is actually doing really well, returning to work this coming Monday! Sometimes, we feel like we have thrown the kitchen sink at his cancer, hoping something gives durable results. Such is life in this battle! We have seen people where TIL works and seen people where TIL doesn’t work, just like ALL the melanoma treatments, very individual responses to each protocol. The cool thing about TIL, and what we are hoping for is that Phil has some positive response, and we get a break from treatment for awhile.We don’t regret any of our treatment moves, and we won’t regret doing TIL, even if it doesn’t work for us. We took the chance, just like all of us have, to do treatments with the POSSIBILITY of positive response, and to have a great summer with our young children. Phil knows we are biding time, hoping to see anti PD1 trials expand, etc. but in the meantime, he has been around for another school year, seen the kids thru another Christmas and birthdays, taught them both how to ride their bikes, took them to amusement parks, showed our son the Lincoln Memorial, and had many, many nice lazy days with them doing normal activities at home. So, I personally wouldn’t tell anyone not to do a specific treatment, melanoma is a crazy unpredictable beast, what works for one, may or may not work for another. I would tell people to fight their own fight, and feel comfortable with their decisions. So Jag, we can disagree with you on TIL, but we really do have a soft spot for you and your family, and wish you many, many years of your child’s laughter! God bless, Valerie (Phil’s wife)
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- June 7, 2012 at 1:05 pm
Jag, First of all big congratulations on your new baby, what JOY! Second, you are our hero, fighting thru brain mets and still doing so well, being NED, truly amazing. We want to be you! My husband has stable brain mets, and your story gives us hope! However, my husband also has several areas of body mets and currently is fighting the good fight! Phil has been in the battle over 2 1/2 years and has done three surgeries, a year of interferon, some leukine, six rounds of biochemo, and now TIL (got his cells back May 9th) at MDAnderson in Houston, which also included 18 doses of high dose IL2 in his two rounds. HE IS A FIGHTER, and is actually doing really well, returning to work this coming Monday! Sometimes, we feel like we have thrown the kitchen sink at his cancer, hoping something gives durable results. Such is life in this battle! We have seen people where TIL works and seen people where TIL doesn’t work, just like ALL the melanoma treatments, very individual responses to each protocol. The cool thing about TIL, and what we are hoping for is that Phil has some positive response, and we get a break from treatment for awhile.We don’t regret any of our treatment moves, and we won’t regret doing TIL, even if it doesn’t work for us. We took the chance, just like all of us have, to do treatments with the POSSIBILITY of positive response, and to have a great summer with our young children. Phil knows we are biding time, hoping to see anti PD1 trials expand, etc. but in the meantime, he has been around for another school year, seen the kids thru another Christmas and birthdays, taught them both how to ride their bikes, took them to amusement parks, showed our son the Lincoln Memorial, and had many, many nice lazy days with them doing normal activities at home. So, I personally wouldn’t tell anyone not to do a specific treatment, melanoma is a crazy unpredictable beast, what works for one, may or may not work for another. I would tell people to fight their own fight, and feel comfortable with their decisions. So Jag, we can disagree with you on TIL, but we really do have a soft spot for you and your family, and wish you many, many years of your child’s laughter! God bless, Valerie (Phil’s wife)
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- June 8, 2012 at 1:41 pm
I went to the NIH for an assessment in 2010 in one of Dr R's trials…they told me to come back in a couple months and they would put me in an IL-2 trial….my medical records from the place said I was stage 3…not stage 4 as I am…said the surgical wound on my groin area was healing nicely – I didn't have surgery to my groin….and the list goes on…I am not impressed by the NIH. I love Dr Weber and Moffitt and my MDX 1106 ( BMS anti PD-1)…NED over 2 years!!
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- June 8, 2012 at 1:41 pm
I went to the NIH for an assessment in 2010 in one of Dr R's trials…they told me to come back in a couple months and they would put me in an IL-2 trial….my medical records from the place said I was stage 3…not stage 4 as I am…said the surgical wound on my groin area was healing nicely – I didn't have surgery to my groin….and the list goes on…I am not impressed by the NIH. I love Dr Weber and Moffitt and my MDX 1106 ( BMS anti PD-1)…NED over 2 years!!
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- June 8, 2012 at 11:11 pm
If your Til cells don't grow in the lab and they don't have any saved Til from a compatible donor, then you would be out of the protocol and would not undergo the immune system depletion. Mike signed a form that would allow Moffitt to use his cells for study and if another patient closely matched and did not grow enough of their own, but I am sure it works better if it is your own cells that they use . The wait time for the cells to grow is about 5 weeks and we were on pins and needles waiting to learn if his grew. They did and he underwent the chemo to kill his immune system to make room for the Til. They also have some of Mike's til cells stored for him for possible future treatment if needed but Mike was the next to last patient at Moffitt following the NIH protocol because of the IL2 side effects.
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- June 8, 2012 at 11:11 pm
If your Til cells don't grow in the lab and they don't have any saved Til from a compatible donor, then you would be out of the protocol and would not undergo the immune system depletion. Mike signed a form that would allow Moffitt to use his cells for study and if another patient closely matched and did not grow enough of their own, but I am sure it works better if it is your own cells that they use . The wait time for the cells to grow is about 5 weeks and we were on pins and needles waiting to learn if his grew. They did and he underwent the chemo to kill his immune system to make room for the Til. They also have some of Mike's til cells stored for him for possible future treatment if needed but Mike was the next to last patient at Moffitt following the NIH protocol because of the IL2 side effects.
-
- June 8, 2012 at 11:11 pm
If your Til cells don't grow in the lab and they don't have any saved Til from a compatible donor, then you would be out of the protocol and would not undergo the immune system depletion. Mike signed a form that would allow Moffitt to use his cells for study and if another patient closely matched and did not grow enough of their own, but I am sure it works better if it is your own cells that they use . The wait time for the cells to grow is about 5 weeks and we were on pins and needles waiting to learn if his grew. They did and he underwent the chemo to kill his immune system to make room for the Til. They also have some of Mike's til cells stored for him for possible future treatment if needed but Mike was the next to last patient at Moffitt following the NIH protocol because of the IL2 side effects.
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- June 8, 2012 at 1:41 pm
I went to the NIH for an assessment in 2010 in one of Dr R's trials…they told me to come back in a couple months and they would put me in an IL-2 trial….my medical records from the place said I was stage 3…not stage 4 as I am…said the surgical wound on my groin area was healing nicely – I didn't have surgery to my groin….and the list goes on…I am not impressed by the NIH. I love Dr Weber and Moffitt and my MDX 1106 ( BMS anti PD-1)…NED over 2 years!!
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