› Forums › General Melanoma Community › Temodar Treatment Program Questions for Past Users
- This topic has 15 replies, 3 voices, and was last updated 12 years, 6 months ago by
Bruce in NH.
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- October 6, 2011 at 5:07 pm
Hi,
Hi,
I am in the process of completing the 42 day Temodar chemo pill program which is designed to attack the melanoma metastases in the brain. I have just completed the 25th day of 42. My question has to do with how many days after the program ends should the next brain MRI be done to assess treatment success. Since it's a chemo based product, one would think you might need several weeks for the chemo to knock down the mets. If you have experience is this area, I would like to hear from you. I need to get down to 3 or less mets to enter the t-cell clinical trial at NIH in Maryland, so this is very important to me that Temodar be successful. Any related comments regarding your success with this drug are appreciated.
Bruce
- Replies
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- October 7, 2011 at 4:19 am
Hey there, Bruce.. Not to be argumentative but informative:
Temodar (temozolomide) was never designed to attack melanoma brain metastisis. Rather, it was originally approved for the treatment of Glioblastoma in conjunction with radiation therapy.
Because so many drugs may be used in an off label environment, Temodar has been "borrowed" to address melanoma; mainly due to the fact that Temodar has been shown to cross the blood brain barrier. Think of your brain as a cut of meat with a string wrap: most drugs are unable to get beyond that string wrap……………….Temodar does.
Also, it is not known exactly how Temodar works, though it is thought to disrupt the celluar functions of cancer. Without getting deep into cellular biology, essentially normal dividing cells stop dividing when they run into another normal cell, with cancer, that process stops and cancer cells continue to divide. Temodar attempts to alter that process.
It should be pointed out that Temodar is essentially the same as Dacarbazine, the difference being Temodar requires the body to metabolize Temodar to turn into Dacarbazine.
That said, you are (guessing) on a 75mg 42 day regimen. Typically in trials when that regimen was created, there was a 90 day scan period. In other words, at the start of your temodar diary a scan date was set at 90 days.
I would ask if temodar alone is your approach to your brain mets; because, again temodar was designed as an ADJUNCT to radiation. Have you done Stereotactic Radio Surgery, outright surgery or Whole Brain Radiation?
Further, which t-cell trial are you considering? There is a t-cell only peptide approach and there is an adoptive cell transfer approach which uses harvested t-cells that are lab multiplied?
All in all, Temodar is one part of a "pronged" approach to melanoma: that is to say it is one element, but not a sole element and is usually used and administered in combination with other elements.
And yes, I have first hand experience with this drug.
As a final note, try not to put all of your eggs in one basket as a way forward when your chosen way forward is subject to change due to time constraints; melanoma has a way of eating a hole in one basket, but is more challenged with a bunch of baskets.
Best wishes and Cheers,
Charlie S
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- October 7, 2011 at 6:17 am
I didn't have brain mets but I think I must have had to agree to do Temodar..I took 300 mg daily for 1 week in every 28 days.It didn't do anything but hold the melanoma from growing for about 6 months and even then that's ssubjective because I also had radiation when I first begun the Temodar…it made me sick as a dog and unless I started the two barf meds the day before I began the cycle I would barf my socks off. My Mayo onc says the thing with the drug is that melanoma will eventually find a way around it, and it did.
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- October 7, 2011 at 6:17 am
I didn't have brain mets but I think I must have had to agree to do Temodar..I took 300 mg daily for 1 week in every 28 days.It didn't do anything but hold the melanoma from growing for about 6 months and even then that's ssubjective because I also had radiation when I first begun the Temodar…it made me sick as a dog and unless I started the two barf meds the day before I began the cycle I would barf my socks off. My Mayo onc says the thing with the drug is that melanoma will eventually find a way around it, and it did.
-
- October 7, 2011 at 6:17 am
I didn't have brain mets but I think I must have had to agree to do Temodar..I took 300 mg daily for 1 week in every 28 days.It didn't do anything but hold the melanoma from growing for about 6 months and even then that's ssubjective because I also had radiation when I first begun the Temodar…it made me sick as a dog and unless I started the two barf meds the day before I began the cycle I would barf my socks off. My Mayo onc says the thing with the drug is that melanoma will eventually find a way around it, and it did.
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- October 7, 2011 at 11:49 am
Hi Charlie,
Thanks for your tutorial on the use of Temodar to fight melanoma in the brain. It was very helpful to read your summary information. To answer your questions, here is the background information. My best hope to stop the spread of melanoma in my body which now has progressed in the past 3 months to the chest, spleen, adrenal glands, stomach and pelvic regions is to get into the adoptive cell transfer approach using harvested t-cells that you mention. The last test I needed to pass for acceptance to NIH in Maryland was a clear brain MRI. In August my brain MRI showed more than 10 brain metastases which just blew me away, as I have had clear scans for over 10 years fighting this disease. So I underwent Whole Brain Radiation Treatment in August, followed by another brain MRI August 29th that showed most of the tumors still present. SRS is not an option, nor is surgery, when so many tumors exist in the brain. So my oncologist recommended that I begin the 42 day Temodar treatment program at a dosage of 140 mg. per day. I have completed 26 of the 42 day program now. My CT scan last week showed continued progression of the disease, which I believe can only be stopped through a systemic treatment offered at NIH. But to get there, I need 3 or less brain mets. Will the Temodar work for me? Statistics say the success rate is 5-10% – not encouraging. But I will continue to fight. If you have knowledge of other drugs I should consider taking in addition to Temodar, I would like to hear about them.
Thanks again, Charlie. Your knowledge on the subject first hand is invaluable.
Bruce
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- October 10, 2011 at 12:13 am
Well Bruce, you surely have a nest of hornets to deal with….so let's go down the list of usual suspects:
1) Have you been braf tested?
2) Have you considered yervoy?
3) If you get into the TIL trial, you would receive it anyway, so is IL-2 included in your conversation?
Since you are 28 days into a 42 day regimen, maybe the 14 days time spent for a Plan B in case the TIL trial doesn't fit you?
Cheers,
Charlie S
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- October 11, 2011 at 12:10 pm
Hi Charlie,
BRAF Tested? Yes…negative. Not an option.
Yervoy Infusions? Yes, completed two 10 week rounds. All my brain mets came after I completed Yervoy. No success for me.
IL-2 Infusions? Yes, in 2009 I spent two weeks in the ICU at Dartmouth-Hitchcock Medical Center and took 20 bags. Had partial response for 3 months, then mets came back in left lung and esophagus. Later in 2009 went back for two more weeks of ICU using biochemo-therapy (IL-2 low dose, Interferon-Alpa 2B, cycplatin, verblastin, dacarbarzine). No impact on mets.
So…I am really counting on some success with Temodar. I know it's a long shot but I manitain a positive attitude every day I wake up and see the sun shining. Every day is a good day. I just entered my 12th year of fighting melanoma and I'm not about to give up now. I'll post again when I have new news. Meanwhile, my message to all of you fighting this disease is to fight hard and NEVER give up! Like Charlie says, research every option.
Bruce
-
- October 11, 2011 at 12:10 pm
Hi Charlie,
BRAF Tested? Yes…negative. Not an option.
Yervoy Infusions? Yes, completed two 10 week rounds. All my brain mets came after I completed Yervoy. No success for me.
IL-2 Infusions? Yes, in 2009 I spent two weeks in the ICU at Dartmouth-Hitchcock Medical Center and took 20 bags. Had partial response for 3 months, then mets came back in left lung and esophagus. Later in 2009 went back for two more weeks of ICU using biochemo-therapy (IL-2 low dose, Interferon-Alpa 2B, cycplatin, verblastin, dacarbarzine). No impact on mets.
So…I am really counting on some success with Temodar. I know it's a long shot but I manitain a positive attitude every day I wake up and see the sun shining. Every day is a good day. I just entered my 12th year of fighting melanoma and I'm not about to give up now. I'll post again when I have new news. Meanwhile, my message to all of you fighting this disease is to fight hard and NEVER give up! Like Charlie says, research every option.
Bruce
-
- October 11, 2011 at 12:10 pm
Hi Charlie,
BRAF Tested? Yes…negative. Not an option.
Yervoy Infusions? Yes, completed two 10 week rounds. All my brain mets came after I completed Yervoy. No success for me.
IL-2 Infusions? Yes, in 2009 I spent two weeks in the ICU at Dartmouth-Hitchcock Medical Center and took 20 bags. Had partial response for 3 months, then mets came back in left lung and esophagus. Later in 2009 went back for two more weeks of ICU using biochemo-therapy (IL-2 low dose, Interferon-Alpa 2B, cycplatin, verblastin, dacarbarzine). No impact on mets.
So…I am really counting on some success with Temodar. I know it's a long shot but I manitain a positive attitude every day I wake up and see the sun shining. Every day is a good day. I just entered my 12th year of fighting melanoma and I'm not about to give up now. I'll post again when I have new news. Meanwhile, my message to all of you fighting this disease is to fight hard and NEVER give up! Like Charlie says, research every option.
Bruce
-
- October 10, 2011 at 12:13 am
Well Bruce, you surely have a nest of hornets to deal with….so let's go down the list of usual suspects:
1) Have you been braf tested?
2) Have you considered yervoy?
3) If you get into the TIL trial, you would receive it anyway, so is IL-2 included in your conversation?
Since you are 28 days into a 42 day regimen, maybe the 14 days time spent for a Plan B in case the TIL trial doesn't fit you?
Cheers,
Charlie S
-
- October 10, 2011 at 12:13 am
Well Bruce, you surely have a nest of hornets to deal with….so let's go down the list of usual suspects:
1) Have you been braf tested?
2) Have you considered yervoy?
3) If you get into the TIL trial, you would receive it anyway, so is IL-2 included in your conversation?
Since you are 28 days into a 42 day regimen, maybe the 14 days time spent for a Plan B in case the TIL trial doesn't fit you?
Cheers,
Charlie S
-
- October 7, 2011 at 11:49 am
Hi Charlie,
Thanks for your tutorial on the use of Temodar to fight melanoma in the brain. It was very helpful to read your summary information. To answer your questions, here is the background information. My best hope to stop the spread of melanoma in my body which now has progressed in the past 3 months to the chest, spleen, adrenal glands, stomach and pelvic regions is to get into the adoptive cell transfer approach using harvested t-cells that you mention. The last test I needed to pass for acceptance to NIH in Maryland was a clear brain MRI. In August my brain MRI showed more than 10 brain metastases which just blew me away, as I have had clear scans for over 10 years fighting this disease. So I underwent Whole Brain Radiation Treatment in August, followed by another brain MRI August 29th that showed most of the tumors still present. SRS is not an option, nor is surgery, when so many tumors exist in the brain. So my oncologist recommended that I begin the 42 day Temodar treatment program at a dosage of 140 mg. per day. I have completed 26 of the 42 day program now. My CT scan last week showed continued progression of the disease, which I believe can only be stopped through a systemic treatment offered at NIH. But to get there, I need 3 or less brain mets. Will the Temodar work for me? Statistics say the success rate is 5-10% – not encouraging. But I will continue to fight. If you have knowledge of other drugs I should consider taking in addition to Temodar, I would like to hear about them.
Thanks again, Charlie. Your knowledge on the subject first hand is invaluable.
Bruce
-
- October 7, 2011 at 11:49 am
Hi Charlie,
Thanks for your tutorial on the use of Temodar to fight melanoma in the brain. It was very helpful to read your summary information. To answer your questions, here is the background information. My best hope to stop the spread of melanoma in my body which now has progressed in the past 3 months to the chest, spleen, adrenal glands, stomach and pelvic regions is to get into the adoptive cell transfer approach using harvested t-cells that you mention. The last test I needed to pass for acceptance to NIH in Maryland was a clear brain MRI. In August my brain MRI showed more than 10 brain metastases which just blew me away, as I have had clear scans for over 10 years fighting this disease. So I underwent Whole Brain Radiation Treatment in August, followed by another brain MRI August 29th that showed most of the tumors still present. SRS is not an option, nor is surgery, when so many tumors exist in the brain. So my oncologist recommended that I begin the 42 day Temodar treatment program at a dosage of 140 mg. per day. I have completed 26 of the 42 day program now. My CT scan last week showed continued progression of the disease, which I believe can only be stopped through a systemic treatment offered at NIH. But to get there, I need 3 or less brain mets. Will the Temodar work for me? Statistics say the success rate is 5-10% – not encouraging. But I will continue to fight. If you have knowledge of other drugs I should consider taking in addition to Temodar, I would like to hear about them.
Thanks again, Charlie. Your knowledge on the subject first hand is invaluable.
Bruce
-
- October 7, 2011 at 4:19 am
Hey there, Bruce.. Not to be argumentative but informative:
Temodar (temozolomide) was never designed to attack melanoma brain metastisis. Rather, it was originally approved for the treatment of Glioblastoma in conjunction with radiation therapy.
Because so many drugs may be used in an off label environment, Temodar has been "borrowed" to address melanoma; mainly due to the fact that Temodar has been shown to cross the blood brain barrier. Think of your brain as a cut of meat with a string wrap: most drugs are unable to get beyond that string wrap……………….Temodar does.
Also, it is not known exactly how Temodar works, though it is thought to disrupt the celluar functions of cancer. Without getting deep into cellular biology, essentially normal dividing cells stop dividing when they run into another normal cell, with cancer, that process stops and cancer cells continue to divide. Temodar attempts to alter that process.
It should be pointed out that Temodar is essentially the same as Dacarbazine, the difference being Temodar requires the body to metabolize Temodar to turn into Dacarbazine.
That said, you are (guessing) on a 75mg 42 day regimen. Typically in trials when that regimen was created, there was a 90 day scan period. In other words, at the start of your temodar diary a scan date was set at 90 days.
I would ask if temodar alone is your approach to your brain mets; because, again temodar was designed as an ADJUNCT to radiation. Have you done Stereotactic Radio Surgery, outright surgery or Whole Brain Radiation?
Further, which t-cell trial are you considering? There is a t-cell only peptide approach and there is an adoptive cell transfer approach which uses harvested t-cells that are lab multiplied?
All in all, Temodar is one part of a "pronged" approach to melanoma: that is to say it is one element, but not a sole element and is usually used and administered in combination with other elements.
And yes, I have first hand experience with this drug.
As a final note, try not to put all of your eggs in one basket as a way forward when your chosen way forward is subject to change due to time constraints; melanoma has a way of eating a hole in one basket, but is more challenged with a bunch of baskets.
Best wishes and Cheers,
Charlie S
-
- October 7, 2011 at 4:19 am
Hey there, Bruce.. Not to be argumentative but informative:
Temodar (temozolomide) was never designed to attack melanoma brain metastisis. Rather, it was originally approved for the treatment of Glioblastoma in conjunction with radiation therapy.
Because so many drugs may be used in an off label environment, Temodar has been "borrowed" to address melanoma; mainly due to the fact that Temodar has been shown to cross the blood brain barrier. Think of your brain as a cut of meat with a string wrap: most drugs are unable to get beyond that string wrap……………….Temodar does.
Also, it is not known exactly how Temodar works, though it is thought to disrupt the celluar functions of cancer. Without getting deep into cellular biology, essentially normal dividing cells stop dividing when they run into another normal cell, with cancer, that process stops and cancer cells continue to divide. Temodar attempts to alter that process.
It should be pointed out that Temodar is essentially the same as Dacarbazine, the difference being Temodar requires the body to metabolize Temodar to turn into Dacarbazine.
That said, you are (guessing) on a 75mg 42 day regimen. Typically in trials when that regimen was created, there was a 90 day scan period. In other words, at the start of your temodar diary a scan date was set at 90 days.
I would ask if temodar alone is your approach to your brain mets; because, again temodar was designed as an ADJUNCT to radiation. Have you done Stereotactic Radio Surgery, outright surgery or Whole Brain Radiation?
Further, which t-cell trial are you considering? There is a t-cell only peptide approach and there is an adoptive cell transfer approach which uses harvested t-cells that are lab multiplied?
All in all, Temodar is one part of a "pronged" approach to melanoma: that is to say it is one element, but not a sole element and is usually used and administered in combination with other elements.
And yes, I have first hand experience with this drug.
As a final note, try not to put all of your eggs in one basket as a way forward when your chosen way forward is subject to change due to time constraints; melanoma has a way of eating a hole in one basket, but is more challenged with a bunch of baskets.
Best wishes and Cheers,
Charlie S
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