Need Help ASAP – Stage 4 and need to make a decision!

I believe the TIL trial is only currently being offered at NIH in Maryland and MDAnderson in Houston. I know that there was a TIL program in Florida but I believe it ran into funding issues, so unsure it’s current status. Anyway, you would have to go to the these locations, and they have to remove one of your tumors and they have to grow the T cells. So lots of variables, since it takes time to grow your cells and on occasion they may not grow enough. However, I am a big fan of TIL, since my husband had it in Houston in May 2012, and he is doing pretty well, as it slowed his disease considerably. I also think AntiPD1 is a great option with good potential and fairly limited side effects, from what I have read. So I think you have decide how quickly you want to start treatment, and are you willing to be away from home. You could always try to get into NIH or MDAnderon, have them remove one of your tumors and let them attempt to grow your T cells, they then freeze them for future use. Lots of avenues to consider!

As part of TIL, you do high dose IL2, two full rounds in the Houston trial. It definitely let’s you know if you can handle high dose IL2, and how the side effects are managed. I tend to think people should go with trials first when they can get into them, and reserve IPI or further high dose IL2 when they are more limited in options, because they are both FDA approved and more readily available. Some people also think sequencing Ipi or AntiPD1 and then if needed, high dose IL2, may work better to really kick up the immune system. We have been fighting stage 4 for almost 20 months, and feel fortunate to have options. You sound like quite a warrior, and there are still many good
options left for you, just make a decision and don’t look back. All the best, Valerie (Phil’s wife)

I believe the TIL trial is only currently being offered at NIH in Maryland and MDAnderson in Houston. I know that there was a TIL program in Florida but I believe it ran into funding issues, so unsure it’s current status. Anyway, you would have to go to the these locations, and they have to remove one of your tumors and they have to grow the T cells. So lots of variables, since it takes time to grow your cells and on occasion they may not grow enough. However, I am a big fan of TIL, since my husband had it in Houston in May 2012, and he is doing pretty well, as it slowed his disease considerably. I also think AntiPD1 is a great option with good potential and fairly limited side effects, from what I have read. So I think you have decide how quickly you want to start treatment, and are you willing to be away from home. You could always try to get into NIH or MDAnderon, have them remove one of your tumors and let them attempt to grow your T cells, they then freeze them for future use. Lots of avenues to consider!

As part of TIL, you do high dose IL2, two full rounds in the Houston trial. It definitely let’s you know if you can handle high dose IL2, and how the side effects are managed. I tend to think people should go with trials first when they can get into them, and reserve IPI or further high dose IL2 when they are more limited in options, because they are both FDA approved and more readily available. Some people also think sequencing Ipi or AntiPD1 and then if needed, high dose IL2, may work better to really kick up the immune system. We have been fighting stage 4 for almost 20 months, and feel fortunate to have options. You sound like quite a warrior, and there are still many good
options left for you, just make a decision and don’t look back. All the best, Valerie (Phil’s wife)

I believe the TIL trial is only currently being offered at NIH in Maryland and MDAnderson in Houston. I know that there was a TIL program in Florida but I believe it ran into funding issues, so unsure it’s current status. Anyway, you would have to go to the these locations, and they have to remove one of your tumors and they have to grow the T cells. So lots of variables, since it takes time to grow your cells and on occasion they may not grow enough. However, I am a big fan of TIL, since my husband had it in Houston in May 2012, and he is doing pretty well, as it slowed his disease considerably. I also think AntiPD1 is a great option with good potential and fairly limited side effects, from what I have read. So I think you have decide how quickly you want to start treatment, and are you willing to be away from home. You could always try to get into NIH or MDAnderon, have them remove one of your tumors and let them attempt to grow your T cells, they then freeze them for future use. Lots of avenues to consider!

As part of TIL, you do high dose IL2, two full rounds in the Houston trial. It definitely let’s you know if you can handle high dose IL2, and how the side effects are managed. I tend to think people should go with trials first when they can get into them, and reserve IPI or further high dose IL2 when they are more limited in options, because they are both FDA approved and more readily available. Some people also think sequencing Ipi or AntiPD1 and then if needed, high dose IL2, may work better to really kick up the immune system. We have been fighting stage 4 for almost 20 months, and feel fortunate to have options. You sound like quite a warrior, and there are still many good
options left for you, just make a decision and don’t look back. All the best, Valerie (Phil’s wife)

No real advice, but you would have to read the clinical trial data to see if previous treatments disqualify you.  IL-2 is an approved treatment so could be done any time.  It is harsh, though, and probably best done when you are strong.  However, you know within a relatively short period of time if you are a responder so it is a valid option.   TIL — there are some posts on here if you search.  I believe IL-2 is also part of that protocol.  So the real question relates to whether or not you could try either of these treatments and later get into a PD-1 study later.  The clinical trial exclusion data should tell you what you can and can't have done.  There have been a lot of posts about IL-2 recently if you just click back through the last month or so.  As for a question "are you better off with a clnical study"?  That's the $64000 question.  IL-2 has a track record.  For those who are total responders (very small percentage), it is typically a durable remission.  IL-2 might also jump start other subsequent treatments.  Clinical trials have no track record.  The PD-1 stuff looks promising, but definitive data isn't there yet.  It's still in trials.  So there is no way to answer your question — you just need to pick a path and never look back.  There is no right answer, just the one that makes the most sense to you!

Best wishes

Janner

No real advice, but you would have to read the clinical trial data to see if previous treatments disqualify you.  IL-2 is an approved treatment so could be done any time.  It is harsh, though, and probably best done when you are strong.  However, you know within a relatively short period of time if you are a responder so it is a valid option.   TIL — there are some posts on here if you search.  I believe IL-2 is also part of that protocol.  So the real question relates to whether or not you could try either of these treatments and later get into a PD-1 study later.  The clinical trial exclusion data should tell you what you can and can't have done.  There have been a lot of posts about IL-2 recently if you just click back through the last month or so.  As for a question "are you better off with a clnical study"?  That's the $64000 question.  IL-2 has a track record.  For those who are total responders (very small percentage), it is typically a durable remission.  IL-2 might also jump start other subsequent treatments.  Clinical trials have no track record.  The PD-1 stuff looks promising, but definitive data isn't there yet.  It's still in trials.  So there is no way to answer your question — you just need to pick a path and never look back.  There is no right answer, just the one that makes the most sense to you!

Best wishes

Janner

No real advice, but you would have to read the clinical trial data to see if previous treatments disqualify you.  IL-2 is an approved treatment so could be done any time.  It is harsh, though, and probably best done when you are strong.  However, you know within a relatively short period of time if you are a responder so it is a valid option.   TIL — there are some posts on here if you search.  I believe IL-2 is also part of that protocol.  So the real question relates to whether or not you could try either of these treatments and later get into a PD-1 study later.  The clinical trial exclusion data should tell you what you can and can't have done.  There have been a lot of posts about IL-2 recently if you just click back through the last month or so.  As for a question "are you better off with a clnical study"?  That's the $64000 question.  IL-2 has a track record.  For those who are total responders (very small percentage), it is typically a durable remission.  IL-2 might also jump start other subsequent treatments.  Clinical trials have no track record.  The PD-1 stuff looks promising, but definitive data isn't there yet.  It's still in trials.  So there is no way to answer your question — you just need to pick a path and never look back.  There is no right answer, just the one that makes the most sense to you!

Best wishes

Janner

Basically I agree with most of the two posts above as good advice.  IL-2 is one of the besg options.   I do like IL-2 as early in the stage IV treatment cycle as possible while one is the strongest.  The problem with Yervoy (Ipi) is also that it can take up to a year to see if it is providing a positive response.  Waiting until late in the treatment cycle may prevent it from having time to work.  As Valerie (Phil's wife) pointed out TIL (ACT) is an option that has provided long term results for some as well.   Also check out:

I tried to post the URL here but the MRF BB refuses to accept the post with the URL included.

MAYWOOD, Il. – Loyola University Medical Center has launched the first clinical trial in the Midwest of an experimental melanoma treatment that genetically engineers a patient's immune system to fight the deadly cancer.

Basically I agree with most of the two posts above as good advice.  IL-2 is one of the besg options.   I do like IL-2 as early in the stage IV treatment cycle as possible while one is the strongest.  The problem with Yervoy (Ipi) is also that it can take up to a year to see if it is providing a positive response.  Waiting until late in the treatment cycle may prevent it from having time to work.  As Valerie (Phil's wife) pointed out TIL (ACT) is an option that has provided long term results for some as well.   Also check out:

I tried to post the URL here but the MRF BB refuses to accept the post with the URL included.

MAYWOOD, Il. – Loyola University Medical Center has launched the first clinical trial in the Midwest of an experimental melanoma treatment that genetically engineers a patient's immune system to fight the deadly cancer.

Basically I agree with most of the two posts above as good advice.  IL-2 is one of the besg options.   I do like IL-2 as early in the stage IV treatment cycle as possible while one is the strongest.  The problem with Yervoy (Ipi) is also that it can take up to a year to see if it is providing a positive response.  Waiting until late in the treatment cycle may prevent it from having time to work.  As Valerie (Phil's wife) pointed out TIL (ACT) is an option that has provided long term results for some as well.   Also check out:

I tried to post the URL here but the MRF BB refuses to accept the post with the URL included.

MAYWOOD, Il. – Loyola University Medical Center has launched the first clinical trial in the Midwest of an experimental melanoma treatment that genetically engineers a patient's immune system to fight the deadly cancer.

My experience with anti-PD1 has been positive so far. I am in the maintenance phase and get my next quarterly infusion tomorrow. Scans today will tell if my mets are still shrinking.  Best wishes!      Dan

My experience with anti-PD1 has been positive so far. I am in the maintenance phase and get my next quarterly infusion tomorrow. Scans today will tell if my mets are still shrinking.  Best wishes!      Dan

My experience with anti-PD1 has been positive so far. I am in the maintenance phase and get my next quarterly infusion tomorrow. Scans today will tell if my mets are still shrinking.  Best wishes!      Dan