› Forums › General Melanoma Community › First Meeting at MD Anderson and Treatment Plan (CVT)
- This topic has 24 replies, 6 voices, and was last updated 12 years, 3 months ago by
dian in spokane.
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- February 21, 2013 at 9:55 pm
Hi Everyone,
Hi Everyone,
We have some answers today about my Dad. We're facing a pretty serious situation (brain, bone, lung, muscles, skin). We've opted for very agressive treatment in the form of Temozolomide, Cisplatin, and Vinblastine (CVT). Our goal is to shrink the crap out of this stuff and hold it at bay. Anyone else have experience with this treatment plan? He'll be on a 21 day cycle. This is crazy to me as he has very few symptoms, feels pretty good, and has been playing 18 holes of golf every few days up to today. My Dad is 67 y/o and in very good physical and mental shape.
Any experience with this treatment would be much appreciated. I haven't been able to find much on the internet. Apparelty Temozolomide is pretty new?
Thanks,
Natasha
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- February 22, 2013 at 12:48 am
Natasha, MDAnderson offers a lot of biochemo, which is usually three chemos plus interferon and low dose IL2. The chemos are Vinblastine, Cisplatin, and either Decarbazine or Temodar! Usually, with history of brain mets they use the Temodar, it’s a pill form that has been used in brain cancer. Biochemo at MDAnderson is offered on a 21 day cycle for up to six courses. It’s a tough treatment, but can kick back this disease and/or buy you time to explore the next plan! Sounds like they are modifying the treatment for your Dad by taking out the immuno therapies.My husband completed six rounds of traditional biochemo at MDAnderson last year! The nurses are top notch and really know this treatment and how to medicate all the side effects, the challenge is keeping up on medications once you are home. Cisplatin is a difficult chemo, I am sure your mother knows all about it. Just keep up with the anti nausea meds, and he should do fine. Also, MDAnderson is wonderful about family staying in the patient’s room, I slept in my husband’s room every night, and I think that support helped him. Best of luck with treatment and keep us posted. Valerie (Phil’s wife)
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- February 22, 2013 at 12:48 am
Natasha, MDAnderson offers a lot of biochemo, which is usually three chemos plus interferon and low dose IL2. The chemos are Vinblastine, Cisplatin, and either Decarbazine or Temodar! Usually, with history of brain mets they use the Temodar, it’s a pill form that has been used in brain cancer. Biochemo at MDAnderson is offered on a 21 day cycle for up to six courses. It’s a tough treatment, but can kick back this disease and/or buy you time to explore the next plan! Sounds like they are modifying the treatment for your Dad by taking out the immuno therapies.My husband completed six rounds of traditional biochemo at MDAnderson last year! The nurses are top notch and really know this treatment and how to medicate all the side effects, the challenge is keeping up on medications once you are home. Cisplatin is a difficult chemo, I am sure your mother knows all about it. Just keep up with the anti nausea meds, and he should do fine. Also, MDAnderson is wonderful about family staying in the patient’s room, I slept in my husband’s room every night, and I think that support helped him. Best of luck with treatment and keep us posted. Valerie (Phil’s wife)
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- February 22, 2013 at 12:48 am
Natasha, MDAnderson offers a lot of biochemo, which is usually three chemos plus interferon and low dose IL2. The chemos are Vinblastine, Cisplatin, and either Decarbazine or Temodar! Usually, with history of brain mets they use the Temodar, it’s a pill form that has been used in brain cancer. Biochemo at MDAnderson is offered on a 21 day cycle for up to six courses. It’s a tough treatment, but can kick back this disease and/or buy you time to explore the next plan! Sounds like they are modifying the treatment for your Dad by taking out the immuno therapies.My husband completed six rounds of traditional biochemo at MDAnderson last year! The nurses are top notch and really know this treatment and how to medicate all the side effects, the challenge is keeping up on medications once you are home. Cisplatin is a difficult chemo, I am sure your mother knows all about it. Just keep up with the anti nausea meds, and he should do fine. Also, MDAnderson is wonderful about family staying in the patient’s room, I slept in my husband’s room every night, and I think that support helped him. Best of luck with treatment and keep us posted. Valerie (Phil’s wife)
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- February 22, 2013 at 4:28 am
Hi Valerie,
Thanks for replying! This is all terrifying, uncharted territory we're exploring. It certainly helps to talk with others who have been there. I feel so fortunate that my parents decided on MD Anderson. Today is day one and I'm already so impressed. My Mom is full of adrenaline right now and she talks really fast so it's a bit hard to take down everything she is telling me. But yes, Biochemo as you described above. Apparently we are doing 2 rounds (40 days) and then we'll go in and check the progress. The biggest thing for my Dad is to make sure his platelets stay above 30,000. (they are currently at 300,000) and we have to watch for brain bleeds. Like most guys his age he is on Plavix which is a blood thinner so they took him off of that pronto. It sounds like Phil is a real warrior! That's so inspiring. I'll keep posting and asking questions as we progress with treatment. And, I'll be keeping an eye on everyone's posts for updates on their journey.
Take care,
Natasha
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- February 22, 2013 at 4:28 am
Hi Valerie,
Thanks for replying! This is all terrifying, uncharted territory we're exploring. It certainly helps to talk with others who have been there. I feel so fortunate that my parents decided on MD Anderson. Today is day one and I'm already so impressed. My Mom is full of adrenaline right now and she talks really fast so it's a bit hard to take down everything she is telling me. But yes, Biochemo as you described above. Apparently we are doing 2 rounds (40 days) and then we'll go in and check the progress. The biggest thing for my Dad is to make sure his platelets stay above 30,000. (they are currently at 300,000) and we have to watch for brain bleeds. Like most guys his age he is on Plavix which is a blood thinner so they took him off of that pronto. It sounds like Phil is a real warrior! That's so inspiring. I'll keep posting and asking questions as we progress with treatment. And, I'll be keeping an eye on everyone's posts for updates on their journey.
Take care,
Natasha
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- February 22, 2013 at 4:28 am
Hi Valerie,
Thanks for replying! This is all terrifying, uncharted territory we're exploring. It certainly helps to talk with others who have been there. I feel so fortunate that my parents decided on MD Anderson. Today is day one and I'm already so impressed. My Mom is full of adrenaline right now and she talks really fast so it's a bit hard to take down everything she is telling me. But yes, Biochemo as you described above. Apparently we are doing 2 rounds (40 days) and then we'll go in and check the progress. The biggest thing for my Dad is to make sure his platelets stay above 30,000. (they are currently at 300,000) and we have to watch for brain bleeds. Like most guys his age he is on Plavix which is a blood thinner so they took him off of that pronto. It sounds like Phil is a real warrior! That's so inspiring. I'll keep posting and asking questions as we progress with treatment. And, I'll be keeping an eye on everyone's posts for updates on their journey.
Take care,
Natasha
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- February 23, 2013 at 6:33 am
Temozolomide ( March 15, 2005, the U.S. Food and Drug Administration approved temozolomide (Temodar® capsules, made by Schering Corporation).
It is one of the few molecules small enough to pass thru the Blood Brain Barrier (BBB) to get to brain tumors.)
One of our biggest irritations is people saying, "but you look so well." They don't realize that often we could be dead in a matter of weeks or months.
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- February 23, 2013 at 6:33 am
Temozolomide ( March 15, 2005, the U.S. Food and Drug Administration approved temozolomide (Temodar® capsules, made by Schering Corporation).
It is one of the few molecules small enough to pass thru the Blood Brain Barrier (BBB) to get to brain tumors.)
One of our biggest irritations is people saying, "but you look so well." They don't realize that often we could be dead in a matter of weeks or months.
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- February 23, 2013 at 6:33 am
Temozolomide ( March 15, 2005, the U.S. Food and Drug Administration approved temozolomide (Temodar® capsules, made by Schering Corporation).
It is one of the few molecules small enough to pass thru the Blood Brain Barrier (BBB) to get to brain tumors.)
One of our biggest irritations is people saying, "but you look so well." They don't realize that often we could be dead in a matter of weeks or months.
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- February 23, 2013 at 11:09 pm
Geez Jerry. I came looking for some positivity and instead I read this…. I’ve been kinda counting on the fact that I look and feel great to mean I’ll be here for awhile yet, not dead in weeks or months. -
- February 23, 2013 at 11:09 pm
Geez Jerry. I came looking for some positivity and instead I read this…. I’ve been kinda counting on the fact that I look and feel great to mean I’ll be here for awhile yet, not dead in weeks or months. -
- February 23, 2013 at 11:09 pm
Geez Jerry. I came looking for some positivity and instead I read this…. I’ve been kinda counting on the fact that I look and feel great to mean I’ll be here for awhile yet, not dead in weeks or months. -
- February 24, 2013 at 2:04 am
hey Holly
go read Jerry's Patnet profile, and you'll find out that he's managed to beat death many times.
and..although I am sure people tell him how gorgeous he is all the time, WE all know he got dragged by a horse till he was barely recognizable.
those folks tellin' him how great he looks probably need glasse <G>
dian
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- February 24, 2013 at 2:04 am
hey Holly
go read Jerry's Patnet profile, and you'll find out that he's managed to beat death many times.
and..although I am sure people tell him how gorgeous he is all the time, WE all know he got dragged by a horse till he was barely recognizable.
those folks tellin' him how great he looks probably need glasse <G>
dian
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- February 24, 2013 at 2:04 am
hey Holly
go read Jerry's Patnet profile, and you'll find out that he's managed to beat death many times.
and..although I am sure people tell him how gorgeous he is all the time, WE all know he got dragged by a horse till he was barely recognizable.
those folks tellin' him how great he looks probably need glasse <G>
dian
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- February 25, 2013 at 5:41 am
Sorry, didn't mean that looking well and in good shape was a negative. IT is not a negative. We do require vigilance and follow-up though. If you've read my other posts, you will see that I think we shuld try to make sure that our family's need to know what they will need if we are not here. We should then learn and fight to keep them from using what they have then learned.
It's just that in some cases melanoma has moved fast and by being discovered too late people have been too far gone to survive the treatments. Read my profile and other posts. I should have been gone long ago if I relied only on statistics, not what I have learned.
I am not one of thosea that are in favor of telling people that things will be fine. We never know, they may be or may not be. The better shape we go into this, the more likely we are to survive the harshness of the treatments. That's why I went for IL-2 up front in 2007.
I still work in the yard (when it's warm and sunny – and even will still ride a horse!). Never got into golf, but have a few acres of country land to take caare of.
The other thing (in spite of my friend Dian's comments). Actually I don't think I look good, but better than I have a right to expect to. The Plastic surgeon asked my wife if she wanted him to try for the Brad Pitts's look. (I was unconciious for the month.) She told him, to go for the Sean Connery look. Two years later I went back to Denver and told him that I was glad he didn't do that either. (I still have most of my hair and most of it is still blacK!)
Many people without melanoma don't really believe that we can be in such good health and our lives be in danger becaue we "look (and act) too healthy."
I do often tell people to be vigilant, not paranoid. Paranoia lets melanoma win too early in the battle and can prevent us enjoying what can be our remaining time. Many people to get to be NED (No Evidence of disease – on scans). Even if one doesn't get NED I say to learn and fight. I have not been without stage IV tumors since at least Feb 2007. Still enjoy bugging my grandkids!
And for DIAN, I'll tell her the story my father used to tell sometiime when we're chatting, But that's NUMBER 1.
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- February 25, 2013 at 5:41 am
Sorry, didn't mean that looking well and in good shape was a negative. IT is not a negative. We do require vigilance and follow-up though. If you've read my other posts, you will see that I think we shuld try to make sure that our family's need to know what they will need if we are not here. We should then learn and fight to keep them from using what they have then learned.
It's just that in some cases melanoma has moved fast and by being discovered too late people have been too far gone to survive the treatments. Read my profile and other posts. I should have been gone long ago if I relied only on statistics, not what I have learned.
I am not one of thosea that are in favor of telling people that things will be fine. We never know, they may be or may not be. The better shape we go into this, the more likely we are to survive the harshness of the treatments. That's why I went for IL-2 up front in 2007.
I still work in the yard (when it's warm and sunny – and even will still ride a horse!). Never got into golf, but have a few acres of country land to take caare of.
The other thing (in spite of my friend Dian's comments). Actually I don't think I look good, but better than I have a right to expect to. The Plastic surgeon asked my wife if she wanted him to try for the Brad Pitts's look. (I was unconciious for the month.) She told him, to go for the Sean Connery look. Two years later I went back to Denver and told him that I was glad he didn't do that either. (I still have most of my hair and most of it is still blacK!)
Many people without melanoma don't really believe that we can be in such good health and our lives be in danger becaue we "look (and act) too healthy."
I do often tell people to be vigilant, not paranoid. Paranoia lets melanoma win too early in the battle and can prevent us enjoying what can be our remaining time. Many people to get to be NED (No Evidence of disease – on scans). Even if one doesn't get NED I say to learn and fight. I have not been without stage IV tumors since at least Feb 2007. Still enjoy bugging my grandkids!
And for DIAN, I'll tell her the story my father used to tell sometiime when we're chatting, But that's NUMBER 1.
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- February 25, 2013 at 5:41 am
Sorry, didn't mean that looking well and in good shape was a negative. IT is not a negative. We do require vigilance and follow-up though. If you've read my other posts, you will see that I think we shuld try to make sure that our family's need to know what they will need if we are not here. We should then learn and fight to keep them from using what they have then learned.
It's just that in some cases melanoma has moved fast and by being discovered too late people have been too far gone to survive the treatments. Read my profile and other posts. I should have been gone long ago if I relied only on statistics, not what I have learned.
I am not one of thosea that are in favor of telling people that things will be fine. We never know, they may be or may not be. The better shape we go into this, the more likely we are to survive the harshness of the treatments. That's why I went for IL-2 up front in 2007.
I still work in the yard (when it's warm and sunny – and even will still ride a horse!). Never got into golf, but have a few acres of country land to take caare of.
The other thing (in spite of my friend Dian's comments). Actually I don't think I look good, but better than I have a right to expect to. The Plastic surgeon asked my wife if she wanted him to try for the Brad Pitts's look. (I was unconciious for the month.) She told him, to go for the Sean Connery look. Two years later I went back to Denver and told him that I was glad he didn't do that either. (I still have most of my hair and most of it is still blacK!)
Many people without melanoma don't really believe that we can be in such good health and our lives be in danger becaue we "look (and act) too healthy."
I do often tell people to be vigilant, not paranoid. Paranoia lets melanoma win too early in the battle and can prevent us enjoying what can be our remaining time. Many people to get to be NED (No Evidence of disease – on scans). Even if one doesn't get NED I say to learn and fight. I have not been without stage IV tumors since at least Feb 2007. Still enjoy bugging my grandkids!
And for DIAN, I'll tell her the story my father used to tell sometiime when we're chatting, But that's NUMBER 1.
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- February 26, 2013 at 4:04 pm
Jerry, you know I love you and was just poking at you. YOU are one of my many heroes on this board.
and of course I know what you mean, almost every day someone tells me how great I look. Which of course I don't either, I am like.. 70lbs overweight! But that's part of it too. They expect cancer patients to be wasting away and not have hair. SO seeing someone who's hardy, drinking vodka tonics, laughing, playing music, well.. I can see why they don't think I am sick
I don't FEEL sick!!
I look forward to hearing that story. I think we might have stolen this thread though 🙂
dian
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- February 26, 2013 at 4:04 pm
Jerry, you know I love you and was just poking at you. YOU are one of my many heroes on this board.
and of course I know what you mean, almost every day someone tells me how great I look. Which of course I don't either, I am like.. 70lbs overweight! But that's part of it too. They expect cancer patients to be wasting away and not have hair. SO seeing someone who's hardy, drinking vodka tonics, laughing, playing music, well.. I can see why they don't think I am sick
I don't FEEL sick!!
I look forward to hearing that story. I think we might have stolen this thread though 🙂
dian
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- February 26, 2013 at 4:04 pm
Jerry, you know I love you and was just poking at you. YOU are one of my many heroes on this board.
and of course I know what you mean, almost every day someone tells me how great I look. Which of course I don't either, I am like.. 70lbs overweight! But that's part of it too. They expect cancer patients to be wasting away and not have hair. SO seeing someone who's hardy, drinking vodka tonics, laughing, playing music, well.. I can see why they don't think I am sick
I don't FEEL sick!!
I look forward to hearing that story. I think we might have stolen this thread though 🙂
dian
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