Temodar experiences

Just wanted to add that you have to act FAST though!

Just wanted to add that you have to act FAST though!

Just wanted to add that you have to act FAST though!

The direct IL2 experience only prolonged life for someone dear to me for a very short time.  It wasn't worth the grueling experience of it.   Temodar is dacarbazine and not known to do a lot sadly.   Best bet is to move onto PD1 access if you can.  Boosting your immune system is top priority!~!

The direct IL2 experience only prolonged life for someone dear to me for a very short time.  It wasn't worth the grueling experience of it.   Temodar is dacarbazine and not known to do a lot sadly.   Best bet is to move onto PD1 access if you can.  Boosting your immune system is top priority!~!

I would go for braf/mek drugs if you can, they have shown to work on the brain.  IL2 and temodar are really old drugs.

I would go for braf/mek drugs if you can, they have shown to work on the brain.  IL2 and temodar are really old drugs.

I would go for braf/mek drugs if you can, they have shown to work on the brain.  IL2 and temodar are really old drugs.

Intrathecal IL2 is definitely not for everyone, but I can say it is saving my husband from leptomeningeal disease.  Disease in the body and brain mets are now the obstacle for him. It is a tough treatment but if you are otherwise healthy and young and asymptomatic that is a big plus.

Dabrafenib is thought to have some effect on the brain, but I don't think will help when you are in the lepto camp.

Intrathecal IL2 is definitely not for everyone, but I can say it is saving my husband from leptomeningeal disease.  Disease in the body and brain mets are now the obstacle for him. It is a tough treatment but if you are otherwise healthy and young and asymptomatic that is a big plus.

Dabrafenib is thought to have some effect on the brain, but I don't think will help when you are in the lepto camp.

Meant to add that intrathecal IL2 is not the same treatment as systemic IL2.  Same drug but an off label use where it is administered via ommaya reservoir directly into CSF.

Meant to add that intrathecal IL2 is not the same treatment as systemic IL2.  Same drug but an off label use where it is administered via ommaya reservoir directly into CSF.

Joy, I am delighted to hear that your husband is responding to intrathecal IL-2 treatment! I will pray that he continues to improve and that he finds a treatment to shrink the other mets in his body. Melanoma warriors definitely have options you didn't have 3 or 4 years ago.

Joy, I am delighted to hear that your husband is responding to intrathecal IL-2 treatment! I will pray that he continues to improve and that he finds a treatment to shrink the other mets in his body. Melanoma warriors definitely have options you didn't have 3 or 4 years ago.

Joy, I am delighted to hear that your husband is responding to intrathecal IL-2 treatment! I will pray that he continues to improve and that he finds a treatment to shrink the other mets in his body. Melanoma warriors definitely have options you didn't have 3 or 4 years ago.

Meant to add that intrathecal IL2 is not the same treatment as systemic IL2.  Same drug but an off label use where it is administered via ommaya reservoir directly into CSF.

Intrathecal IL2 is definitely not for everyone, but I can say it is saving my husband from leptomeningeal disease.  Disease in the body and brain mets are now the obstacle for him. It is a tough treatment but if you are otherwise healthy and young and asymptomatic that is a big plus.

Dabrafenib is thought to have some effect on the brain, but I don't think will help when you are in the lepto camp.

The direct IL2 experience only prolonged life for someone dear to me for a very short time.  It wasn't worth the grueling experience of it.   Temodar is dacarbazine and not known to do a lot sadly.   Best bet is to move onto PD1 access if you can.  Boosting your immune system is top priority!~!

I think Hannah was asking about Temodar and no one responded about it.  It is nothing but a form of dacarbazine that has a low response rate.  I find it disturbing that some of you are pushing her to rush to MDA for an unproven, highly toxic drug regimen. Does anyone remember what Amy went through witht that here? One person responding in one place in their body doesn't prove anything.  So answer the question instead of pushing her somewhere else.

Amy responded to the intrathecal il-2, but succumbed to other disease.

Amy Busby had her LEPT0 cleared up for the last 6 months of her life.  She died because, in spite of being promised re-entry to the BRAF trial if she could get the Lepto cleared, BMS refused to honor their word and let her die from the re-growth of the other internal tumors that were almost removed by the BRAF treatment before BMS said she had to stop the BRAF if she got the intrathecal il-2.  They did promise her re-entry if the lepto was cleared for 2 months.  They failed to keep their word to her and Dr Pappa.  I forwarded all the data from my extensive contacts with Amy to Snickers.   Her husband is started on it last year and is now even her caretaker while she is having other medical problems at present.

Amy Busby had her LEPT0 cleared up for the last 6 months of her life.  She died because, in spite of being promised re-entry to the BRAF trial if she could get the Lepto cleared, BMS refused to honor their word and let her die from the re-growth of the other internal tumors that were almost removed by the BRAF treatment before BMS said she had to stop the BRAF if she got the intrathecal il-2.  They did promise her re-entry if the lepto was cleared for 2 months.  They failed to keep their word to her and Dr Pappa.  I forwarded all the data from my extensive contacts with Amy to Snickers.   Her husband is started on it last year and is now even her caretaker while she is having other medical problems at present.

Amy Busby had her LEPT0 cleared up for the last 6 months of her life.  She died because, in spite of being promised re-entry to the BRAF trial if she could get the Lepto cleared, BMS refused to honor their word and let her die from the re-growth of the other internal tumors that were almost removed by the BRAF treatment before BMS said she had to stop the BRAF if she got the intrathecal il-2.  They did promise her re-entry if the lepto was cleared for 2 months.  They failed to keep their word to her and Dr Pappa.  I forwarded all the data from my extensive contacts with Amy to Snickers.   Her husband is started on it last year and is now even her caretaker while she is having other medical problems at present.

Amy responded to the intrathecal il-2, but succumbed to other disease.

Amy responded to the intrathecal il-2, but succumbed to other disease.

And there is absolutely no proof that the MDA approach of IL2 going into the brain is curative, no studies, no nothing.  So it is just as well proven that other less toxic methods are feasible.  But you are not experts here to push someone to something as you have been. You don't know her situation at all and again she asked about temodar NOT IL2 shot into the brain.

And there is absolutely no proof that the MDA approach of IL2 going into the brain is curative, no studies, no nothing.  So it is just as well proven that other less toxic methods are feasible.  But you are not experts here to push someone to something as you have been. You don't know her situation at all and again she asked about temodar NOT IL2 shot into the brain.

And there is absolutely no proof that the MDA approach of IL2 going into the brain is curative, no studies, no nothing.  So it is just as well proven that other less toxic methods are feasible.  But you are not experts here to push someone to something as you have been. You don't know her situation at all and again she asked about temodar NOT IL2 shot into the brain.

Yeah when folks push this hard for one treatment and doctor and in one place, makes you wonder who wrote the post!

I find your post a little ironic based on the statement and the fact you signed it anonymously.

Hanah,

I hope you don't think people are being too pushy.  I think this community just really cares for one another and they are concerned for you.  I also hope those concerns haven't increased your stress level.  Everyone on this site offers advice based on their knowledge and experience.  I think there's few if any here that are doctors and therefore qualified to give medical advice but the information I've received here has been invaluable over the last few years.  When I post something I always hope that people give me as much information, good or bad, as they have and then it's up to me to take that information and do my due diligence.  Hopefully you can do the same with the info presented on this thread so far.

I will say that nearly everyone that posted advice for Hanah posted using their username and nearly everyone that had issue with that advice posted anonymously.  I think that is unfortunate because it often leads to less civility in the post.

I wish you well Hanah and will have you in my prayers as you find a suitable treatment plan.

Brian

I find your post a little ironic based on the statement and the fact you signed it anonymously.

Hanah,

I hope you don't think people are being too pushy.  I think this community just really cares for one another and they are concerned for you.  I also hope those concerns haven't increased your stress level.  Everyone on this site offers advice based on their knowledge and experience.  I think there's few if any here that are doctors and therefore qualified to give medical advice but the information I've received here has been invaluable over the last few years.  When I post something I always hope that people give me as much information, good or bad, as they have and then it's up to me to take that information and do my due diligence.  Hopefully you can do the same with the info presented on this thread so far.

I will say that nearly everyone that posted advice for Hanah posted using their username and nearly everyone that had issue with that advice posted anonymously.  I think that is unfortunate because it often leads to less civility in the post.

I wish you well Hanah and will have you in my prayers as you find a suitable treatment plan.

Brian

Brian, well said–and I admire your restraint.

Brian, well said–and I admire your restraint.

Brian, well said–and I admire your restraint.

Thank you for this post, Brian.  I could not agree with you more.

My intention in sharing my husband experience was only to share information.  I don't appreciate accusations by others here that I am "pushing" something.  Treatment decisions are very personal, and I have found this forum a valuable source of information and experiences.  When anonymous posters try to "silence" regular folks from sharing personal experiences that's when you have to be suspicious.  😉

I sincerely hope that others with Temador experience will chime in for Hannah and answer her question.

And Hannah, I sincerely wish you the very best in your journey.  God bless you.

joy

Thank you for this post, Brian.  I could not agree with you more.

My intention in sharing my husband experience was only to share information.  I don't appreciate accusations by others here that I am "pushing" something.  Treatment decisions are very personal, and I have found this forum a valuable source of information and experiences.  When anonymous posters try to "silence" regular folks from sharing personal experiences that's when you have to be suspicious.  😉

I sincerely hope that others with Temador experience will chime in for Hannah and answer her question.

And Hannah, I sincerely wish you the very best in your journey.  God bless you.

joy

Thank you for this post, Brian.  I could not agree with you more.

My intention in sharing my husband experience was only to share information.  I don't appreciate accusations by others here that I am "pushing" something.  Treatment decisions are very personal, and I have found this forum a valuable source of information and experiences.  When anonymous posters try to "silence" regular folks from sharing personal experiences that's when you have to be suspicious.  😉

I sincerely hope that others with Temador experience will chime in for Hannah and answer her question.

And Hannah, I sincerely wish you the very best in your journey.  God bless you.

joy

I find your post a little ironic based on the statement and the fact you signed it anonymously.

Hanah,

I hope you don't think people are being too pushy.  I think this community just really cares for one another and they are concerned for you.  I also hope those concerns haven't increased your stress level.  Everyone on this site offers advice based on their knowledge and experience.  I think there's few if any here that are doctors and therefore qualified to give medical advice but the information I've received here has been invaluable over the last few years.  When I post something I always hope that people give me as much information, good or bad, as they have and then it's up to me to take that information and do my due diligence.  Hopefully you can do the same with the info presented on this thread so far.

I will say that nearly everyone that posted advice for Hanah posted using their username and nearly everyone that had issue with that advice posted anonymously.  I think that is unfortunate because it often leads to less civility in the post.

I wish you well Hanah and will have you in my prayers as you find a suitable treatment plan.

Brian

Yeah when folks push this hard for one treatment and doctor and in one place, makes you wonder who wrote the post!

Yeah when folks push this hard for one treatment and doctor and in one place, makes you wonder who wrote the post!

I think Hannah was asking about Temodar and no one responded about it.  It is nothing but a form of dacarbazine that has a low response rate.  I find it disturbing that some of you are pushing her to rush to MDA for an unproven, highly toxic drug regimen. Does anyone remember what Amy went through witht that here? One person responding in one place in their body doesn't prove anything.  So answer the question instead of pushing her somewhere else.

I think Hannah was asking about Temodar and no one responded about it.  It is nothing but a form of dacarbazine that has a low response rate.  I find it disturbing that some of you are pushing her to rush to MDA for an unproven, highly toxic drug regimen. Does anyone remember what Amy went through witht that here? One person responding in one place in their body doesn't prove anything.  So answer the question instead of pushing her somewhere else.

Brian,

 As if the user names are really their names?   I disagree that the intent was well intentioned but instead very pushy for someone in a very scary situation.  Suggesting she pull up stakes and rush to an unproven procedure far from home is not helpful. She asked about temodar and ended up with a lot more she didn't need.  

Brian,

 As if the user names are really their names?   I disagree that the intent was well intentioned but instead very pushy for someone in a very scary situation.  Suggesting she pull up stakes and rush to an unproven procedure far from home is not helpful. She asked about temodar and ended up with a lot more she didn't need.  

Brian,

 As if the user names are really their names?   I disagree that the intent was well intentioned but instead very pushy for someone in a very scary situation.  Suggesting she pull up stakes and rush to an unproven procedure far from home is not helpful. She asked about temodar and ended up with a lot more she didn't need.  

Jerry, would love to see where you read that PD1 had same death rate as HD IL2 20 years plus ago.  That whole paragraph didn't make sense.  IL2 is very old and 94% of patients DON'T respond to it.  Having it poured into your brain has not been shown to work in any trial.  So again, folks shouldn't force their opinions without lots of evidence.

Jerry, would love to see where you read that PD1 had same death rate as HD IL2 20 years plus ago.  That whole paragraph didn't make sense.  IL2 is very old and 94% of patients DON'T respond to it.  Having it poured into your brain has not been shown to work in any trial.  So again, folks shouldn't force their opinions without lots of evidence.

Jerry, would love to see where you read that PD1 had same death rate as HD IL2 20 years plus ago.  That whole paragraph didn't make sense.  IL2 is very old and 94% of patients DON'T respond to it.  Having it poured into your brain has not been shown to work in any trial.  So again, folks shouldn't force their opinions without lots of evidence.

Got the Death Rates from reading the IL-2 and PD-1 clinical trial reports.  20 to 23% of across the board melanoma patients did have a POSITIVE response to IL-2 in the majority of studies.  The lowest response rate I have seen in any study is 16%.  I and the others have not tried to force anyone into any treatment.  We have only told what our and our friends experiences have been.   We believe that people should know of all options and not be scared off by people that were not elgible for treatments they wanted, but were not elgible for, and so try to prevent others from learning ALL the options that are available.  Don't know what your problem with Dr. Pappa is, but many people are still alive due to having him as their Oncologist. 

   We are not afraid to say who we are  and what our opinmions are,  I do not know where you pull your numbers from but have not seen them in any Peer Reviewed Journal articles.

Got the Death Rates from reading the IL-2 and PD-1 clinical trial reports.  20 to 23% of across the board melanoma patients did have a POSITIVE response to IL-2 in the majority of studies.  The lowest response rate I have seen in any study is 16%.  I and the others have not tried to force anyone into any treatment.  We have only told what our and our friends experiences have been.   We believe that people should know of all options and not be scared off by people that were not elgible for treatments they wanted, but were not elgible for, and so try to prevent others from learning ALL the options that are available.  Don't know what your problem with Dr. Pappa is, but many people are still alive due to having him as their Oncologist. 

   We are not afraid to say who we are  and what our opinmions are,  I do not know where you pull your numbers from but have not seen them in any Peer Reviewed Journal articles.

Got the Death Rates from reading the IL-2 and PD-1 clinical trial reports.  20 to 23% of across the board melanoma patients did have a POSITIVE response to IL-2 in the majority of studies.  The lowest response rate I have seen in any study is 16%.  I and the others have not tried to force anyone into any treatment.  We have only told what our and our friends experiences have been.   We believe that people should know of all options and not be scared off by people that were not elgible for treatments they wanted, but were not elgible for, and so try to prevent others from learning ALL the options that are available.  Don't know what your problem with Dr. Pappa is, but many people are still alive due to having him as their Oncologist. 

   We are not afraid to say who we are  and what our opinmions are,  I do not know where you pull your numbers from but have not seen them in any Peer Reviewed Journal articles.

OK people, why all the criticism of each other? This is suppose to be SUPPORT!! 

Anti PD-1 is still in study, expanded access. If you have ACTIVE BRAIN LESIONS, YOU DO NOT QUALIFY for the study, or if you have to take higher than 2 mg of Decadron.

If you are BRAF/MEK POSITIVE, you have a few more treatment options.

There is no clear, concise evidence that PD-1 is effective on Brain mets.

My husband is fighting this terrible disease. He has brain, lung and subcutaneous tumors. He has done 2 rounds of Ipi / Yervoy. He had extensive progression of disease while he was getting the last round of Ipi. 

We are now waiting for his next MRI on June 5 to see if he has any active brain lesions. I DO NOT have a good feeling about this. The last MRI he had at least 28!

Keep praying for a miracle, for the doctors to find a CURE for this awful disease.

Best of luck to everyone. Prayers.

OK people, why all the criticism of each other? This is suppose to be SUPPORT!! 

Anti PD-1 is still in study, expanded access. If you have ACTIVE BRAIN LESIONS, YOU DO NOT QUALIFY for the study, or if you have to take higher than 2 mg of Decadron.

If you are BRAF/MEK POSITIVE, you have a few more treatment options.

There is no clear, concise evidence that PD-1 is effective on Brain mets.

My husband is fighting this terrible disease. He has brain, lung and subcutaneous tumors. He has done 2 rounds of Ipi / Yervoy. He had extensive progression of disease while he was getting the last round of Ipi. 

We are now waiting for his next MRI on June 5 to see if he has any active brain lesions. I DO NOT have a good feeling about this. The last MRI he had at least 28!

Keep praying for a miracle, for the doctors to find a CURE for this awful disease.

Best of luck to everyone. Prayers.

OK people, why all the criticism of each other? This is suppose to be SUPPORT!! 

Anti PD-1 is still in study, expanded access. If you have ACTIVE BRAIN LESIONS, YOU DO NOT QUALIFY for the study, or if you have to take higher than 2 mg of Decadron.

If you are BRAF/MEK POSITIVE, you have a few more treatment options.

There is no clear, concise evidence that PD-1 is effective on Brain mets.

My husband is fighting this terrible disease. He has brain, lung and subcutaneous tumors. He has done 2 rounds of Ipi / Yervoy. He had extensive progression of disease while he was getting the last round of Ipi. 

We are now waiting for his next MRI on June 5 to see if he has any active brain lesions. I DO NOT have a good feeling about this. The last MRI he had at least 28!

Keep praying for a miracle, for the doctors to find a CURE for this awful disease.

Best of luck to everyone. Prayers.