BioChemo questions

Wow that is really some list for Biochemo. I can only share my experience on one of them, that being Interferon. June 2012 I was on high dose Interferon for one month. I have always thought of myself as an athlete and enjoy pushing myself in the fitness area. Given the choice of doing nothing or Interferon, I choose the drug. By the end of the first week my wife was helping me out of the car at the hospital. My Liver #'s starting to rise so each week they had to lower the dose in order to keep me going, the goal became to make it to the end of the month. Now, I know that not everyone has the same response to Interferon, I went from 220lbs down to 200lbs in the first 3 weeks and my personality changed and not for the better. I decided to stop at that point, since the literature at the time showed no statistical difference between one month high dose followed by low dose for a year vs 1month high dose. Like so many others here I eventually progressed with lung and brain mets in the summer of 2013. Since January I have been on the Bristol Myer Squibb trial of Nivolumab and Ipi ( double blind study). I am able to train near my old level on the drugs, with the only real  side effect being fatigue. My tumors reduced in size and have stayed stable, they call it a partial response. I would really encourage you to look at the 2014 ASCO videos on youtube. Dr. Ribas or Dr.Jedd Wolchok are really good sources. The new drugs are game changers!!!  I wish you the best in your journey. Ed  

Wow that is really some list for Biochemo. I can only share my experience on one of them, that being Interferon. June 2012 I was on high dose Interferon for one month. I have always thought of myself as an athlete and enjoy pushing myself in the fitness area. Given the choice of doing nothing or Interferon, I choose the drug. By the end of the first week my wife was helping me out of the car at the hospital. My Liver #'s starting to rise so each week they had to lower the dose in order to keep me going, the goal became to make it to the end of the month. Now, I know that not everyone has the same response to Interferon, I went from 220lbs down to 200lbs in the first 3 weeks and my personality changed and not for the better. I decided to stop at that point, since the literature at the time showed no statistical difference between one month high dose followed by low dose for a year vs 1month high dose. Like so many others here I eventually progressed with lung and brain mets in the summer of 2013. Since January I have been on the Bristol Myer Squibb trial of Nivolumab and Ipi ( double blind study). I am able to train near my old level on the drugs, with the only real  side effect being fatigue. My tumors reduced in size and have stayed stable, they call it a partial response. I would really encourage you to look at the 2014 ASCO videos on youtube. Dr. Ribas or Dr.Jedd Wolchok are really good sources. The new drugs are game changers!!!  I wish you the best in your journey. Ed  

Wow that is really some list for Biochemo. I can only share my experience on one of them, that being Interferon. June 2012 I was on high dose Interferon for one month. I have always thought of myself as an athlete and enjoy pushing myself in the fitness area. Given the choice of doing nothing or Interferon, I choose the drug. By the end of the first week my wife was helping me out of the car at the hospital. My Liver #'s starting to rise so each week they had to lower the dose in order to keep me going, the goal became to make it to the end of the month. Now, I know that not everyone has the same response to Interferon, I went from 220lbs down to 200lbs in the first 3 weeks and my personality changed and not for the better. I decided to stop at that point, since the literature at the time showed no statistical difference between one month high dose followed by low dose for a year vs 1month high dose. Like so many others here I eventually progressed with lung and brain mets in the summer of 2013. Since January I have been on the Bristol Myer Squibb trial of Nivolumab and Ipi ( double blind study). I am able to train near my old level on the drugs, with the only real  side effect being fatigue. My tumors reduced in size and have stayed stable, they call it a partial response. I would really encourage you to look at the 2014 ASCO videos on youtube. Dr. Ribas or Dr.Jedd Wolchok are really good sources. The new drugs are game changers!!!  I wish you the best in your journey. Ed  

Hi Ronald,

My daughter is 26 and stage IIIb.  She has been NED since surgery on 1/31/13.  She did 3 rounds of biochemotherapy starting in February of 2013.  At the time it was the only option for stage III NED other than interferon alone.  She was also treated at Kaiser in Riverside California.  The treatment was very difficult.  When you are in the hospital the most you can do after the first day is walk a little.  The first week home you will be exhausted and gradually start to feel better and begin to eat normally and then it's time for the next round.  Each round of treatment was different for her with the first one having lots of nausea and vomitting.  They gave her more meds to prevent this the second round and that one was the easiest.  The third round caused her to get C. Diff which is a bacterial infection of the intestinal system and she had to be in isolation.  After all 3 rounds of treatment she was able to return to work (as a teacher) the last half of May.  She wasn't really able to exercise at all during the entire course of the treatment and lost a lot of weight.  Her hair started to fall out just before she started her 2nd round of treatment and, though she didn't go bald, she might as well have and had to cut what was left off very short – like 1 inch length.  Keep in mind the mental changes that happen with this treatment and know that you will perhaps not "feel" like yourself for up to 6 months or so after treatment stops.  She continues to be NED more than 18 months later and her hair is growing back in beautifully.  The nursing staff at Kaiser is wonderful and are very quick to help with meds or other treatments to minimize the side effects of the treatment.  The worst one is rigors or uncontrollable shaking with fever that occurs from the interleuken.  Please make sure you have someone who can stay with you throughout the treatment sessions (24 hours for all 5 days).  You will need them.  We feel blessed to have had this option and I wish you all the best.  

Hi Ronald,

My daughter is 26 and stage IIIb.  She has been NED since surgery on 1/31/13.  She did 3 rounds of biochemotherapy starting in February of 2013.  At the time it was the only option for stage III NED other than interferon alone.  She was also treated at Kaiser in Riverside California.  The treatment was very difficult.  When you are in the hospital the most you can do after the first day is walk a little.  The first week home you will be exhausted and gradually start to feel better and begin to eat normally and then it's time for the next round.  Each round of treatment was different for her with the first one having lots of nausea and vomitting.  They gave her more meds to prevent this the second round and that one was the easiest.  The third round caused her to get C. Diff which is a bacterial infection of the intestinal system and she had to be in isolation.  After all 3 rounds of treatment she was able to return to work (as a teacher) the last half of May.  She wasn't really able to exercise at all during the entire course of the treatment and lost a lot of weight.  Her hair started to fall out just before she started her 2nd round of treatment and, though she didn't go bald, she might as well have and had to cut what was left off very short – like 1 inch length.  Keep in mind the mental changes that happen with this treatment and know that you will perhaps not "feel" like yourself for up to 6 months or so after treatment stops.  She continues to be NED more than 18 months later and her hair is growing back in beautifully.  The nursing staff at Kaiser is wonderful and are very quick to help with meds or other treatments to minimize the side effects of the treatment.  The worst one is rigors or uncontrollable shaking with fever that occurs from the interleuken.  Please make sure you have someone who can stay with you throughout the treatment sessions (24 hours for all 5 days).  You will need them.  We feel blessed to have had this option and I wish you all the best.  

Hi Ronald,

My daughter is 26 and stage IIIb.  She has been NED since surgery on 1/31/13.  She did 3 rounds of biochemotherapy starting in February of 2013.  At the time it was the only option for stage III NED other than interferon alone.  She was also treated at Kaiser in Riverside California.  The treatment was very difficult.  When you are in the hospital the most you can do after the first day is walk a little.  The first week home you will be exhausted and gradually start to feel better and begin to eat normally and then it's time for the next round.  Each round of treatment was different for her with the first one having lots of nausea and vomitting.  They gave her more meds to prevent this the second round and that one was the easiest.  The third round caused her to get C. Diff which is a bacterial infection of the intestinal system and she had to be in isolation.  After all 3 rounds of treatment she was able to return to work (as a teacher) the last half of May.  She wasn't really able to exercise at all during the entire course of the treatment and lost a lot of weight.  Her hair started to fall out just before she started her 2nd round of treatment and, though she didn't go bald, she might as well have and had to cut what was left off very short – like 1 inch length.  Keep in mind the mental changes that happen with this treatment and know that you will perhaps not "feel" like yourself for up to 6 months or so after treatment stops.  She continues to be NED more than 18 months later and her hair is growing back in beautifully.  The nursing staff at Kaiser is wonderful and are very quick to help with meds or other treatments to minimize the side effects of the treatment.  The worst one is rigors or uncontrollable shaking with fever that occurs from the interleuken.  Please make sure you have someone who can stay with you throughout the treatment sessions (24 hours for all 5 days).  You will need them.  We feel blessed to have had this option and I wish you all the best.  

Kyle,

 I really don't see where the other post is anymore negative than yours. It said the same thing, biochemo not proven scientifically to extend survival. It mentioned having it and not working.  It is a costly treatment and really toxic.  We have much better choices now than to go that route.

I got IL-2 at Kaiser Riverside in 2010 and felt very well taken care of. They have (or had for me) a great team in their ABC program.

I got IL-2 at Kaiser Riverside in 2010 and felt very well taken care of. They have (or had for me) a great team in their ABC program.

I got IL-2 at Kaiser Riverside in 2010 and felt very well taken care of. They have (or had for me) a great team in their ABC program.

Wasn't referring to any reply above, just a few I've seen in the past.

Wasn't referring to any reply above, just a few I've seen in the past.

Wasn't referring to any reply above, just a few I've seen in the past.

Kyle,

 I really don't see where the other post is anymore negative than yours. It said the same thing, biochemo not proven scientifically to extend survival. It mentioned having it and not working.  It is a costly treatment and really toxic.  We have much better choices now than to go that route.

Kyle,

 I really don't see where the other post is anymore negative than yours. It said the same thing, biochemo not proven scientifically to extend survival. It mentioned having it and not working.  It is a costly treatment and really toxic.  We have much better choices now than to go that route.

Ronald,   My husband, Phil did six rounds of biochemo in Houston before the TIL trial.  His biochemo consisted of Cisplatin, Vinblastine, Temodar, IL2, and interferon.   To answer your question, biochemo is tough, you will most likely lose your hair, you will spend one week in the hospital, the first week home from the hospital is rough but medications help the side effects, by the third week my husband, Phil returned to work.  He could work that week, but was not doing anything extra like exercise, then the biochemo cycle started again.  I felt Cisplatin was a difficult chemo to tolerate, and my husband does have some hearing loss that they attribute to his six rounds of this chemo.  I do know at least two people who are stable/NED since doing biochemo.  No guarantees, but it happens.  The real question now is with Antipd1 approved, could they get the same effect with a much less toxic treatment, who really knows??  But Worth discussion!!! 

With biochemo you usually get scanned after two rounds, and can stop the treatment if it isn't working. If you are already NED, there is no visible gauge, so decisions before harder. It's always good to get a second opinion, and to make sure you are dealing with a melanoma specialist. We don't regret doing biochemo, for Phil it was his bridge treatment while his T cells grew and then we waited our turn for the TIL trial.  And, maybe it set Phil up to be a success at TIL, I believe each treatment has some value.  Heck, my husband had also completed one year of interferon, which some people thought was crazy at the time.  All I know for certain is Phil is still here, living life almost 5 years from diagnosis, and so far all his treatments helped us get to the next step.  Whatever you decide, talk to a melanoma doctor, hear the options, go with your gut, and don't look back!  I truly wish you all the best on whatever treatment you decide to do.   Valerie (Phil's wife)

Ronald,   My husband, Phil did six rounds of biochemo in Houston before the TIL trial.  His biochemo consisted of Cisplatin, Vinblastine, Temodar, IL2, and interferon.   To answer your question, biochemo is tough, you will most likely lose your hair, you will spend one week in the hospital, the first week home from the hospital is rough but medications help the side effects, by the third week my husband, Phil returned to work.  He could work that week, but was not doing anything extra like exercise, then the biochemo cycle started again.  I felt Cisplatin was a difficult chemo to tolerate, and my husband does have some hearing loss that they attribute to his six rounds of this chemo.  I do know at least two people who are stable/NED since doing biochemo.  No guarantees, but it happens.  The real question now is with Antipd1 approved, could they get the same effect with a much less toxic treatment, who really knows??  But Worth discussion!!! 

With biochemo you usually get scanned after two rounds, and can stop the treatment if it isn't working. If you are already NED, there is no visible gauge, so decisions before harder. It's always good to get a second opinion, and to make sure you are dealing with a melanoma specialist. We don't regret doing biochemo, for Phil it was his bridge treatment while his T cells grew and then we waited our turn for the TIL trial.  And, maybe it set Phil up to be a success at TIL, I believe each treatment has some value.  Heck, my husband had also completed one year of interferon, which some people thought was crazy at the time.  All I know for certain is Phil is still here, living life almost 5 years from diagnosis, and so far all his treatments helped us get to the next step.  Whatever you decide, talk to a melanoma doctor, hear the options, go with your gut, and don't look back!  I truly wish you all the best on whatever treatment you decide to do.   Valerie (Phil's wife)

Ronald,   My husband, Phil did six rounds of biochemo in Houston before the TIL trial.  His biochemo consisted of Cisplatin, Vinblastine, Temodar, IL2, and interferon.   To answer your question, biochemo is tough, you will most likely lose your hair, you will spend one week in the hospital, the first week home from the hospital is rough but medications help the side effects, by the third week my husband, Phil returned to work.  He could work that week, but was not doing anything extra like exercise, then the biochemo cycle started again.  I felt Cisplatin was a difficult chemo to tolerate, and my husband does have some hearing loss that they attribute to his six rounds of this chemo.  I do know at least two people who are stable/NED since doing biochemo.  No guarantees, but it happens.  The real question now is with Antipd1 approved, could they get the same effect with a much less toxic treatment, who really knows??  But Worth discussion!!! 

With biochemo you usually get scanned after two rounds, and can stop the treatment if it isn't working. If you are already NED, there is no visible gauge, so decisions before harder. It's always good to get a second opinion, and to make sure you are dealing with a melanoma specialist. We don't regret doing biochemo, for Phil it was his bridge treatment while his T cells grew and then we waited our turn for the TIL trial.  And, maybe it set Phil up to be a success at TIL, I believe each treatment has some value.  Heck, my husband had also completed one year of interferon, which some people thought was crazy at the time.  All I know for certain is Phil is still here, living life almost 5 years from diagnosis, and so far all his treatments helped us get to the next step.  Whatever you decide, talk to a melanoma doctor, hear the options, go with your gut, and don't look back!  I truly wish you all the best on whatever treatment you decide to do.   Valerie (Phil's wife)

Do a search on this site.  There are definitely others – mostly from Kaiser – who have been this route before.  Kaiser seems to be the main one to offer biochemo nowadays.  Over the years, though, there have been plenty who have posted here and done biochemo. 

Do a search on this site.  There are definitely others – mostly from Kaiser – who have been this route before.  Kaiser seems to be the main one to offer biochemo nowadays.  Over the years, though, there have been plenty who have posted here and done biochemo. 

Do a search on this site.  There are definitely others – mostly from Kaiser – who have been this route before.  Kaiser seems to be the main one to offer biochemo nowadays.  Over the years, though, there have been plenty who have posted here and done biochemo. 

Just one more comment.  Why would doctors push for a therapy that is very old and  that doesn't have any scientific backing to work?  Because they profit from it.  The hospitals, HMOS, etc. gain a lot of money (from in-patient expenses) from the harsh treatments of biochemo and IL2 while the patients gain so little and sometimes their immune system and mental health suffers from them.  With interferon alone, if you've had any history of depression, do not do it!  Doing Yervoy now would not prevent you from doing biochemo later.  Your doctors need to go the present and future where these drugs are used anymore by the top melanoma places, like Sloan Kettering.   Before being dead set on a treatment you have to do your homework, even when you are caught up in a scary time and place.  

Seriously, I get offended when I see these comments!  MDAnderson was doing a lot of biochemo three years ago, when my husband started that treatment there in November 2011. We trusted the medical care and direction of our medical experts there, and I truly, truly believe biochemo saved my husband's life, since it slowed down his aggressively growing melanoma at the time, and got us into a TIL trial.  Biochemo turned the tide, and didn't wreck his immune system.  He finished Biochemo in March 2012 and got TIL in May 2012, and has been stable, needing no further treatment since then.  His doctors at MDAnderson cared about Phil and his care, and I don't believe they would ever have recommended biochemo on a strictly financial basis for the hospital.  Really, have you ever met Dr Patrick Hwu and Dr Wen Jen, they want patients to live, they care, and are dedicated physicians.  Every case is different, Phil needed chemo at the time to halt what was happening in his body.  I totally get biochemo isn't for everyone, and I also totally respect everyone's decision and course of treatment for them.  Once you have educated yourself, go with what feels right for you, and please know the majority of us support you.  A good blog is Christina Strong Enough, who did biochemo and I believe is over 4 years NED and doing great!     Valerie (Phil's wife)

Well said Valerie.

Well said Valerie.

Well said Valerie.

Seriously, I get offended when I see these comments!  MDAnderson was doing a lot of biochemo three years ago, when my husband started that treatment there in November 2011. We trusted the medical care and direction of our medical experts there, and I truly, truly believe biochemo saved my husband's life, since it slowed down his aggressively growing melanoma at the time, and got us into a TIL trial.  Biochemo turned the tide, and didn't wreck his immune system.  He finished Biochemo in March 2012 and got TIL in May 2012, and has been stable, needing no further treatment since then.  His doctors at MDAnderson cared about Phil and his care, and I don't believe they would ever have recommended biochemo on a strictly financial basis for the hospital.  Really, have you ever met Dr Patrick Hwu and Dr Wen Jen, they want patients to live, they care, and are dedicated physicians.  Every case is different, Phil needed chemo at the time to halt what was happening in his body.  I totally get biochemo isn't for everyone, and I also totally respect everyone's decision and course of treatment for them.  Once you have educated yourself, go with what feels right for you, and please know the majority of us support you.  A good blog is Christina Strong Enough, who did biochemo and I believe is over 4 years NED and doing great!     Valerie (Phil's wife)

Seriously, I get offended when I see these comments!  MDAnderson was doing a lot of biochemo three years ago, when my husband started that treatment there in November 2011. We trusted the medical care and direction of our medical experts there, and I truly, truly believe biochemo saved my husband's life, since it slowed down his aggressively growing melanoma at the time, and got us into a TIL trial.  Biochemo turned the tide, and didn't wreck his immune system.  He finished Biochemo in March 2012 and got TIL in May 2012, and has been stable, needing no further treatment since then.  His doctors at MDAnderson cared about Phil and his care, and I don't believe they would ever have recommended biochemo on a strictly financial basis for the hospital.  Really, have you ever met Dr Patrick Hwu and Dr Wen Jen, they want patients to live, they care, and are dedicated physicians.  Every case is different, Phil needed chemo at the time to halt what was happening in his body.  I totally get biochemo isn't for everyone, and I also totally respect everyone's decision and course of treatment for them.  Once you have educated yourself, go with what feels right for you, and please know the majority of us support you.  A good blog is Christina Strong Enough, who did biochemo and I believe is over 4 years NED and doing great!     Valerie (Phil's wife)

Just one more comment.  Why would doctors push for a therapy that is very old and  that doesn't have any scientific backing to work?  Because they profit from it.  The hospitals, HMOS, etc. gain a lot of money (from in-patient expenses) from the harsh treatments of biochemo and IL2 while the patients gain so little and sometimes their immune system and mental health suffers from them.  With interferon alone, if you've had any history of depression, do not do it!  Doing Yervoy now would not prevent you from doing biochemo later.  Your doctors need to go the present and future where these drugs are used anymore by the top melanoma places, like Sloan Kettering.   Before being dead set on a treatment you have to do your homework, even when you are caught up in a scary time and place.  

Just one more comment.  Why would doctors push for a therapy that is very old and  that doesn't have any scientific backing to work?  Because they profit from it.  The hospitals, HMOS, etc. gain a lot of money (from in-patient expenses) from the harsh treatments of biochemo and IL2 while the patients gain so little and sometimes their immune system and mental health suffers from them.  With interferon alone, if you've had any history of depression, do not do it!  Doing Yervoy now would not prevent you from doing biochemo later.  Your doctors need to go the present and future where these drugs are used anymore by the top melanoma places, like Sloan Kettering.   Before being dead set on a treatment you have to do your homework, even when you are caught up in a scary time and place.  

The FACTS from NIH:

Ronald, you should read the article above because Valerie is only telling you her personal story and this artricle is based on many people's experience.  Go to: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2365480/

Ronald, you should read the article above because Valerie is only telling you her personal story and this artricle is based on many people's experience.  Go to: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2365480/

Ronald, you should read the article above because Valerie is only telling you her personal story and this artricle is based on many people's experience.  Go to: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2365480/

The FACTS from NIH:

The FACTS from NIH:

Absolutely, squash!  Personal blogs are not scientific stories of the truth about therapies.  And if folks don't believe there is profit motive involved they need a reality check.  Medicine is all about making money for the doctors, hospitals, pharmas etc.!

Absolutely, squash!  Personal blogs are not scientific stories of the truth about therapies.  And if folks don't believe there is profit motive involved they need a reality check.  Medicine is all about making money for the doctors, hospitals, pharmas etc.!

Absolutely, squash!  Personal blogs are not scientific stories of the truth about therapies.  And if folks don't believe there is profit motive involved they need a reality check.  Medicine is all about making money for the doctors, hospitals, pharmas etc.!

Artie,

That is such a good point to make!  I know I was wiped out from biochemo and lost 40 lbs!  It took me a long time to recover and then get well enough to fight the new tumors that came back after.  That's an issue with TIL and I decided against it because I worried I wouldn't be strong enough to do anything else.

It is a good point, and goes both ways, too.  As many of us have learned, this can be a long journey with lots of twists and turns.  While we'd all choose to have that first treatment work and be done with it, we accept the twists and turns vs. the other alternative.  So when considering treatment options, we take a long view towards possible future options, understanding that the medical landscape and our own physical status are constantly changing and unpredictable.  Sometimes we choose a treatment based on the hope that it will still leave us strong enough for a later one if needed.  Sometimes we choose a treatment as a "bridge", even if we're not confident in it's overall chance of success, but hoping it will make us stronger for that next treatment.  And sometimes we choose the hardest treatment today, when we might be at our strongest and better able to endure it than we might later on.  No easy or right/wrong decisions, only the best personal decisions we can make given the information we have at hand.

Joe

It is a good point, and goes both ways, too.  As many of us have learned, this can be a long journey with lots of twists and turns.  While we'd all choose to have that first treatment work and be done with it, we accept the twists and turns vs. the other alternative.  So when considering treatment options, we take a long view towards possible future options, understanding that the medical landscape and our own physical status are constantly changing and unpredictable.  Sometimes we choose a treatment based on the hope that it will still leave us strong enough for a later one if needed.  Sometimes we choose a treatment as a "bridge", even if we're not confident in it's overall chance of success, but hoping it will make us stronger for that next treatment.  And sometimes we choose the hardest treatment today, when we might be at our strongest and better able to endure it than we might later on.  No easy or right/wrong decisions, only the best personal decisions we can make given the information we have at hand.

Joe

It is a good point, and goes both ways, too.  As many of us have learned, this can be a long journey with lots of twists and turns.  While we'd all choose to have that first treatment work and be done with it, we accept the twists and turns vs. the other alternative.  So when considering treatment options, we take a long view towards possible future options, understanding that the medical landscape and our own physical status are constantly changing and unpredictable.  Sometimes we choose a treatment based on the hope that it will still leave us strong enough for a later one if needed.  Sometimes we choose a treatment as a "bridge", even if we're not confident in it's overall chance of success, but hoping it will make us stronger for that next treatment.  And sometimes we choose the hardest treatment today, when we might be at our strongest and better able to endure it than we might later on.  No easy or right/wrong decisions, only the best personal decisions we can make given the information we have at hand.

Joe

Artie,

That is such a good point to make!  I know I was wiped out from biochemo and lost 40 lbs!  It took me a long time to recover and then get well enough to fight the new tumors that came back after.  That's an issue with TIL and I decided against it because I worried I wouldn't be strong enough to do anything else.

Artie,

That is such a good point to make!  I know I was wiped out from biochemo and lost 40 lbs!  It took me a long time to recover and then get well enough to fight the new tumors that came back after.  That's an issue with TIL and I decided against it because I worried I wouldn't be strong enough to do anything else.