Temodar durable response??

Hi David,

My husband Dave has been on Temodar since November, and has been stable and doing well – working full time and enjoying life.  He is doing the pills at home, on 42 days off for 14.  He will go in for scans the end of March, but has been stable since starting it.  I know that others have achieved a stable response, and one (Rocco maybe?) has been NED after brain mets using Temodar.

I think people tend to dismiss Temodar, but they should remember that some people HAD to respond to it in order for it to be an approved therapy.  Why shouldn't you be in that group?

Best of luck,

Maria

Hi David,

My husband Dave has been on Temodar since November, and has been stable and doing well – working full time and enjoying life.  He is doing the pills at home, on 42 days off for 14.  He will go in for scans the end of March, but has been stable since starting it.  I know that others have achieved a stable response, and one (Rocco maybe?) has been NED after brain mets using Temodar.

I think people tend to dismiss Temodar, but they should remember that some people HAD to respond to it in order for it to be an approved therapy.  Why shouldn't you be in that group?

Best of luck,

Maria

Hi David,

My husband Dave has been on Temodar since November, and has been stable and doing well – working full time and enjoying life.  He is doing the pills at home, on 42 days off for 14.  He will go in for scans the end of March, but has been stable since starting it.  I know that others have achieved a stable response, and one (Rocco maybe?) has been NED after brain mets using Temodar.

I think people tend to dismiss Temodar, but they should remember that some people HAD to respond to it in order for it to be an approved therapy.  Why shouldn't you be in that group?

Best of luck,

Maria

David, My husband had WBR which finished the first week of November, then he started biochemo at M D Anderson. He has completed 5 rounds of biochemo since starting in November. It’s a cocktail, of cisplatin, vinblastine, IL2, interferon, and five days of temodar. So, he takes temodar, dose 320, for five days, in the 21 day cycle. My husband has done well in terms of his brain mets since his surgery the last week of September. Last MRI done two weeks ago looked really good, but hard to say if it’s the drugs or the radiation, or combination. His body mets have been trickier for us to deal with at this point. Best of luck to you, be positive, our experience with whole brain radiation went very smoothly and my husband still works two weeks in his biochemo cycle. We try to live a very “normal” life when we aren’t inpatient at MDAnderson, and so far so good. God bless, Valerie (Phil’s wife)

David, My husband had WBR which finished the first week of November, then he started biochemo at M D Anderson. He has completed 5 rounds of biochemo since starting in November. It’s a cocktail, of cisplatin, vinblastine, IL2, interferon, and five days of temodar. So, he takes temodar, dose 320, for five days, in the 21 day cycle. My husband has done well in terms of his brain mets since his surgery the last week of September. Last MRI done two weeks ago looked really good, but hard to say if it’s the drugs or the radiation, or combination. His body mets have been trickier for us to deal with at this point. Best of luck to you, be positive, our experience with whole brain radiation went very smoothly and my husband still works two weeks in his biochemo cycle. We try to live a very “normal” life when we aren’t inpatient at MDAnderson, and so far so good. God bless, Valerie (Phil’s wife)

David, My husband had WBR which finished the first week of November, then he started biochemo at M D Anderson. He has completed 5 rounds of biochemo since starting in November. It’s a cocktail, of cisplatin, vinblastine, IL2, interferon, and five days of temodar. So, he takes temodar, dose 320, for five days, in the 21 day cycle. My husband has done well in terms of his brain mets since his surgery the last week of September. Last MRI done two weeks ago looked really good, but hard to say if it’s the drugs or the radiation, or combination. His body mets have been trickier for us to deal with at this point. Best of luck to you, be positive, our experience with whole brain radiation went very smoothly and my husband still works two weeks in his biochemo cycle. We try to live a very “normal” life when we aren’t inpatient at MDAnderson, and so far so good. God bless, Valerie (Phil’s wife)

David,

When I was diagnosed stage IV in 2005, I had 2 brain lesions along with 5 mets throughout my body (largest in the lung)…I underwent gamma knife (radiation) for the brain and then started Temodar as a "clean up" measure (my words)for the brain and to see if the other lesions would be affected. I was on a 360 mg dosage for 16 months total (23 days off, 5 on).

Within the first 2 mos I saw a response as all the tumors were shrinking. By Oct. 2005 my lung lesion was shrunk to the point that I could have a lobectomy to have removed what little remained. Even more encouraging was that what tissue was removed was all necrotic!

Besides a problem with a miniscule recurrence in the brain (eliminated with gamma again), I have been NED since that time. The thing you learn quickly about this disease is that success follows no particular pattern or group- there are long term stage IV survivors (one guy since 1977)! So don't think of yourself as another statistic because it just represents a large group number but not necessarily your individual case.

Hope, strength, and wisdom to you as you begin your treatment.

Karen

David,

When I was diagnosed stage IV in 2005, I had 2 brain lesions along with 5 mets throughout my body (largest in the lung)…I underwent gamma knife (radiation) for the brain and then started Temodar as a "clean up" measure (my words)for the brain and to see if the other lesions would be affected. I was on a 360 mg dosage for 16 months total (23 days off, 5 on).

Within the first 2 mos I saw a response as all the tumors were shrinking. By Oct. 2005 my lung lesion was shrunk to the point that I could have a lobectomy to have removed what little remained. Even more encouraging was that what tissue was removed was all necrotic!

Besides a problem with a miniscule recurrence in the brain (eliminated with gamma again), I have been NED since that time. The thing you learn quickly about this disease is that success follows no particular pattern or group- there are long term stage IV survivors (one guy since 1977)! So don't think of yourself as another statistic because it just represents a large group number but not necessarily your individual case.

Hope, strength, and wisdom to you as you begin your treatment.

Karen

David,

When I was diagnosed stage IV in 2005, I had 2 brain lesions along with 5 mets throughout my body (largest in the lung)…I underwent gamma knife (radiation) for the brain and then started Temodar as a "clean up" measure (my words)for the brain and to see if the other lesions would be affected. I was on a 360 mg dosage for 16 months total (23 days off, 5 on).

Within the first 2 mos I saw a response as all the tumors were shrinking. By Oct. 2005 my lung lesion was shrunk to the point that I could have a lobectomy to have removed what little remained. Even more encouraging was that what tissue was removed was all necrotic!

Besides a problem with a miniscule recurrence in the brain (eliminated with gamma again), I have been NED since that time. The thing you learn quickly about this disease is that success follows no particular pattern or group- there are long term stage IV survivors (one guy since 1977)! So don't think of yourself as another statistic because it just represents a large group number but not necessarily your individual case.

Hope, strength, and wisdom to you as you begin your treatment.

Karen

I had two weeks of radiation daily. I started Temodar 300mg a day for 5 days. I continued on Temodar 300MG for 5 days out of every 28 days. I was stable from July 09 to about Feb 10 before the melanoma began to grow again.

I had two weeks of radiation daily. I started Temodar 300mg a day for 5 days. I continued on Temodar 300MG for 5 days out of every 28 days. I was stable from July 09 to about Feb 10 before the melanoma began to grow again.

I had two weeks of radiation daily. I started Temodar 300mg a day for 5 days. I continued on Temodar 300MG for 5 days out of every 28 days. I was stable from July 09 to about Feb 10 before the melanoma began to grow again.

Hi Dave,

I haven't been active on the board for quite a while but happened to check in and see your post.   I went Stage IV back in July 2005. METs in my Liver and neck.  The neck tumor was removed.    I went on a trial of Temodar and Nexavar  with the MET  still in my liver and have been NED since about 4 months later.   The trial was a phase II trial that was cancelled because it didn't seem to be working for most.  I was on the combination for 2 years and Nexavar alone for about another 2 more before they finally took me off anything.   Not sure why it worked for me.   I also took Turmeric supplements and went on an "almost Vegan diet"   (I ate some fish).   I stopped the diet about 4 years ago.

I'd look for a trial where they are combining things with the Temodar.

 

Best wishes

 

Ed

Hi Dave,

I haven't been active on the board for quite a while but happened to check in and see your post.   I went Stage IV back in July 2005. METs in my Liver and neck.  The neck tumor was removed.    I went on a trial of Temodar and Nexavar  with the MET  still in my liver and have been NED since about 4 months later.   The trial was a phase II trial that was cancelled because it didn't seem to be working for most.  I was on the combination for 2 years and Nexavar alone for about another 2 more before they finally took me off anything.   Not sure why it worked for me.   I also took Turmeric supplements and went on an "almost Vegan diet"   (I ate some fish).   I stopped the diet about 4 years ago.

I'd look for a trial where they are combining things with the Temodar.

 

Best wishes

 

Ed

Hi Dave,

I haven't been active on the board for quite a while but happened to check in and see your post.   I went Stage IV back in July 2005. METs in my Liver and neck.  The neck tumor was removed.    I went on a trial of Temodar and Nexavar  with the MET  still in my liver and have been NED since about 4 months later.   The trial was a phase II trial that was cancelled because it didn't seem to be working for most.  I was on the combination for 2 years and Nexavar alone for about another 2 more before they finally took me off anything.   Not sure why it worked for me.   I also took Turmeric supplements and went on an "almost Vegan diet"   (I ate some fish).   I stopped the diet about 4 years ago.

I'd look for a trial where they are combining things with the Temodar.

 

Best wishes

 

Ed

Hey, David.  I don't have any experience with Temodar but just wanted to say that is's good to hear from you and wish you well.  I heard you were having some problems with the brain mets.  Glad you're back. 

FrankD  Brooklyn

Hey, David.  I don't have any experience with Temodar but just wanted to say that is's good to hear from you and wish you well.  I heard you were having some problems with the brain mets.  Glad you're back. 

FrankD  Brooklyn

Hey, David.  I don't have any experience with Temodar but just wanted to say that is's good to hear from you and wish you well.  I heard you were having some problems with the brain mets.  Glad you're back. 

FrankD  Brooklyn

Hi David,

My dad has 2 brain mets and three spots. One on his back, adrenal gland and stomach. I think the docs want to try temodar. What has been your experience?

Thanks,

Justin

Hi David,

My dad has 2 brain mets and three spots. One on his back, adrenal gland and stomach. I think the docs want to try temodar. What has been your experience?

Thanks,

Justin

Hi David,

My dad has 2 brain mets and three spots. One on his back, adrenal gland and stomach. I think the docs want to try temodar. What has been your experience?

Thanks,

Justin