Interferon what will it be like?

Why are you doing interferon?

It is not used by many melanoma centres of excelence because of its toxicity and lack of OS benefit.

Why are you doing interferon?

It is not used by many melanoma centres of excelence because of its toxicity and lack of OS benefit.

Why are you doing interferon?

It is not used by many melanoma centres of excelence because of its toxicity and lack of OS benefit.

Kmiles,

I think the port would be overkill for interferon.  The low dose maintenance phase is simply three shots a week to  your sides so you'd only be getting the port for the one month of High dose treatment.  If you have good veins and both arms available you could probably get by with IVs for the month.  If you are like me with poor veins and only one arm available you'll probably want to get a PICC line installed.  It's an outpatient procedure and not too much of a pain but after a month I was very happy to be rid of it.

http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter

You'll hear this over and over but everyone is different on the side effects.  Some are completely unable to function and some have little impact.  I managed pretty good but it still was no cake walk.  I was able to work minimally during the high dose phase.  Went in around 9:00, worked until about 1:00 and then went for my infusion.  For the low dose phase I worked pretty much full time but it wasn't uncommon for me to come in to work an hour or two late so that I could sleep in. 

You're not asking for opinions on interferon but you'll find there are many that have one on it.  If you are still considering whether are not the treatment is for you I'll be happy to share my thoughts.  If you aren't and know the treatment is right for you then go for it and never second guess yourself.

Brian

Kmiles,

I think the port would be overkill for interferon.  The low dose maintenance phase is simply three shots a week to  your sides so you'd only be getting the port for the one month of High dose treatment.  If you have good veins and both arms available you could probably get by with IVs for the month.  If you are like me with poor veins and only one arm available you'll probably want to get a PICC line installed.  It's an outpatient procedure and not too much of a pain but after a month I was very happy to be rid of it.

http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter

You'll hear this over and over but everyone is different on the side effects.  Some are completely unable to function and some have little impact.  I managed pretty good but it still was no cake walk.  I was able to work minimally during the high dose phase.  Went in around 9:00, worked until about 1:00 and then went for my infusion.  For the low dose phase I worked pretty much full time but it wasn't uncommon for me to come in to work an hour or two late so that I could sleep in. 

You're not asking for opinions on interferon but you'll find there are many that have one on it.  If you are still considering whether are not the treatment is for you I'll be happy to share my thoughts.  If you aren't and know the treatment is right for you then go for it and never second guess yourself.

Brian

Kmiles,

I think the port would be overkill for interferon.  The low dose maintenance phase is simply three shots a week to  your sides so you'd only be getting the port for the one month of High dose treatment.  If you have good veins and both arms available you could probably get by with IVs for the month.  If you are like me with poor veins and only one arm available you'll probably want to get a PICC line installed.  It's an outpatient procedure and not too much of a pain but after a month I was very happy to be rid of it.

http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter

You'll hear this over and over but everyone is different on the side effects.  Some are completely unable to function and some have little impact.  I managed pretty good but it still was no cake walk.  I was able to work minimally during the high dose phase.  Went in around 9:00, worked until about 1:00 and then went for my infusion.  For the low dose phase I worked pretty much full time but it wasn't uncommon for me to come in to work an hour or two late so that I could sleep in. 

You're not asking for opinions on interferon but you'll find there are many that have one on it.  If you are still considering whether are not the treatment is for you I'll be happy to share my thoughts.  If you aren't and know the treatment is right for you then go for it and never second guess yourself.

Brian

One side effect the Doc's don't talk aabout a lot is the mental o nes.  Most people need meds for rhem..  Here is a list of things to be aware of at this site.   http://www.drugs.com/ppa/interferon-beta-1a.html

 

One side effect the Doc's don't talk aabout a lot is the mental o nes.  Most people need meds for rhem..  Here is a list of things to be aware of at this site.   http://www.drugs.com/ppa/interferon-beta-1a.html

 

One side effect the Doc's don't talk aabout a lot is the mental o nes.  Most people need meds for rhem..  Here is a list of things to be aware of at this site.   http://www.drugs.com/ppa/interferon-beta-1a.html

 

One side effect the Doc's don't talk aabout a lot is the mental o nes.  Most people need meds for rhem..  Here is a list of things to be aware of at this site.   http://www.drugs.com/ppa/interferon-beta-1a.html

 

One side effect the Doc's don't talk aabout a lot is the mental o nes.  Most people need meds for rhem..  Here is a list of things to be aware of at this site.   http://www.drugs.com/ppa/interferon-beta-1a.html

 

One side effect the Doc's don't talk aabout a lot is the mental o nes.  Most people need meds for rhem..  Here is a list of things to be aware of at this site.   http://www.drugs.com/ppa/interferon-beta-1a.html

 

From study at Memorial Sloan Kettering:  

What does all this mean to the patient? It means that, among patients destined to recur, a year’s worth of HD IFN treatment can delay the time of recurrence in a small subset, although for half of these patients this delay will be less than 1 year. However, the overall chance of recurrence and the overall survival is not improved. This means that, if the patient is destined to relapse and die of melanoma, HD IFN does not affect this nor does it significantly delay the time of death.

 

HD IFN is associated with toxicities that result in decreased performance status in virtually all patients. In the most recent HD IFN trials, severe toxicities (grade 3–4) were frequently reported for fatigue, myalgias, and hepatotoxicity (Table 1). Although toxicities such as fatigue, fever, and flu-like symptoms are universal, they are under-reported in publications since generally only grade 3 or worse toxicities are reported. Depression appears to be very common, occurring in 40% of patients if patients are assessed carefully [4]. Patients reporting a depressed mood or insomnia before starting HD IFN have been shown to be at a higher risk for worsening of depression during treatment, particularly if they also have low levels of social support [5]. In some patients, serious cardiac, hepatic, and bone marrow toxicities are also seen, and because of the need to screen for and manage these toxicities, frequent follow-up and blood tests are necessary in patients on HD IFN. This represents both a financial cost as well as a further cost in quality of life (QoL).

 

From study at Memorial Sloan Kettering:  

What does all this mean to the patient? It means that, among patients destined to recur, a year’s worth of HD IFN treatment can delay the time of recurrence in a small subset, although for half of these patients this delay will be less than 1 year. However, the overall chance of recurrence and the overall survival is not improved. This means that, if the patient is destined to relapse and die of melanoma, HD IFN does not affect this nor does it significantly delay the time of death.

 

HD IFN is associated with toxicities that result in decreased performance status in virtually all patients. In the most recent HD IFN trials, severe toxicities (grade 3–4) were frequently reported for fatigue, myalgias, and hepatotoxicity (Table 1). Although toxicities such as fatigue, fever, and flu-like symptoms are universal, they are under-reported in publications since generally only grade 3 or worse toxicities are reported. Depression appears to be very common, occurring in 40% of patients if patients are assessed carefully [4]. Patients reporting a depressed mood or insomnia before starting HD IFN have been shown to be at a higher risk for worsening of depression during treatment, particularly if they also have low levels of social support [5]. In some patients, serious cardiac, hepatic, and bone marrow toxicities are also seen, and because of the need to screen for and manage these toxicities, frequent follow-up and blood tests are necessary in patients on HD IFN. This represents both a financial cost as well as a further cost in quality of life (QoL).

 

From study at Memorial Sloan Kettering:  

What does all this mean to the patient? It means that, among patients destined to recur, a year’s worth of HD IFN treatment can delay the time of recurrence in a small subset, although for half of these patients this delay will be less than 1 year. However, the overall chance of recurrence and the overall survival is not improved. This means that, if the patient is destined to relapse and die of melanoma, HD IFN does not affect this nor does it significantly delay the time of death.

 

HD IFN is associated with toxicities that result in decreased performance status in virtually all patients. In the most recent HD IFN trials, severe toxicities (grade 3–4) were frequently reported for fatigue, myalgias, and hepatotoxicity (Table 1). Although toxicities such as fatigue, fever, and flu-like symptoms are universal, they are under-reported in publications since generally only grade 3 or worse toxicities are reported. Depression appears to be very common, occurring in 40% of patients if patients are assessed carefully [4]. Patients reporting a depressed mood or insomnia before starting HD IFN have been shown to be at a higher risk for worsening of depression during treatment, particularly if they also have low levels of social support [5]. In some patients, serious cardiac, hepatic, and bone marrow toxicities are also seen, and because of the need to screen for and manage these toxicities, frequent follow-up and blood tests are necessary in patients on HD IFN. This represents both a financial cost as well as a further cost in quality of life (QoL).

 

I went through the year treatment of Interferon from 8/00 – 7/01. I had microscopic amounts of mm in one sentinel node. I was one of the fortunate ones that had few side effects. I seemed to be nauseous a lot of the time but never threw up. Nothing tasted the same so I had little appetite. And I had headaches almost every day. I was able to continue working as an accountant 30 hours a week and keep up with the regular routines as a wife and mother of two kids who were 6 and 8. Some days were better than others but over all it was tolerable.

Like Brian, I went to work in the morning during the high dose phase. My doctor's office was just down the street from my office so it was super convenient to run over when I needed to. I did not get a port but had a PICC line. That was great as they could use it for the drug and the blood work. My veins really suck so getting it in wasn't that pleasant but it kept me from having to go through the hassle every single day of finding a vein that would cooperate. 

I totally agree with the comment regarding the mental side effects. I was NOT on antidepressants during the year but went on them when I finished. Looking back, I believe it may have been helpful had a been on them during the treatment.

I would like to note that I have been NED which calculates to over 13 years since the end of my treatment! I have not had a reoccurrence or any additional problems! Was it the node dissection? Was it Interferon? I don't know nor do I care. I just want to keep my NED status!

As Brian pointed out, there will be people who feel they need to give you their "opinion" on Interferon. A lot of them will want to quote studies or articles. I would love it if people only give their "opinion" if they or a close loved one have gone through the treatment. Without the personal experience, an "opinion" is no more than a guess of how a person think it works. I have known people like me who have gone through the treatment just fine. I also know people that have been completely bed ridden during the treatment. Some it has helped. Others it has not. It is a personal decision. If there are no other good options for someone, I also suggest to give Interferon a try. 

One other thing to keep in mind with the board, a lot of people that have been NED for long amounts of time no longer frequent the board. They have gone on with their busy lives and don't contribute as much. Because of this, you can't really get a good sense for how many people any treatment has actually helped or how long they have been NED. The people that are still fighting and need support or have questions make up the majority of the board. I have been active on the board since my dx and as a past board member of MRF from 2003 – 2013 feel compelled to stay involved to provide help when I can.

My last piece of advice is once you have chosen a treatment, stand behind it 110%. Don't play the "would of, could of, should of" game. You never win!

You are welcome to email directly if there is anything else I might be able to help [email protected]. Best of luck!

Take care!

Cara 

I went through the year treatment of Interferon from 8/00 – 7/01. I had microscopic amounts of mm in one sentinel node. I was one of the fortunate ones that had few side effects. I seemed to be nauseous a lot of the time but never threw up. Nothing tasted the same so I had little appetite. And I had headaches almost every day. I was able to continue working as an accountant 30 hours a week and keep up with the regular routines as a wife and mother of two kids who were 6 and 8. Some days were better than others but over all it was tolerable.

Like Brian, I went to work in the morning during the high dose phase. My doctor's office was just down the street from my office so it was super convenient to run over when I needed to. I did not get a port but had a PICC line. That was great as they could use it for the drug and the blood work. My veins really suck so getting it in wasn't that pleasant but it kept me from having to go through the hassle every single day of finding a vein that would cooperate. 

I totally agree with the comment regarding the mental side effects. I was NOT on antidepressants during the year but went on them when I finished. Looking back, I believe it may have been helpful had a been on them during the treatment.

I would like to note that I have been NED which calculates to over 13 years since the end of my treatment! I have not had a reoccurrence or any additional problems! Was it the node dissection? Was it Interferon? I don't know nor do I care. I just want to keep my NED status!

As Brian pointed out, there will be people who feel they need to give you their "opinion" on Interferon. A lot of them will want to quote studies or articles. I would love it if people only give their "opinion" if they or a close loved one have gone through the treatment. Without the personal experience, an "opinion" is no more than a guess of how a person think it works. I have known people like me who have gone through the treatment just fine. I also know people that have been completely bed ridden during the treatment. Some it has helped. Others it has not. It is a personal decision. If there are no other good options for someone, I also suggest to give Interferon a try. 

One other thing to keep in mind with the board, a lot of people that have been NED for long amounts of time no longer frequent the board. They have gone on with their busy lives and don't contribute as much. Because of this, you can't really get a good sense for how many people any treatment has actually helped or how long they have been NED. The people that are still fighting and need support or have questions make up the majority of the board. I have been active on the board since my dx and as a past board member of MRF from 2003 – 2013 feel compelled to stay involved to provide help when I can.

My last piece of advice is once you have chosen a treatment, stand behind it 110%. Don't play the "would of, could of, should of" game. You never win!

You are welcome to email directly if there is anything else I might be able to help [email protected]. Best of luck!

Take care!

Cara 

I went through the year treatment of Interferon from 8/00 – 7/01. I had microscopic amounts of mm in one sentinel node. I was one of the fortunate ones that had few side effects. I seemed to be nauseous a lot of the time but never threw up. Nothing tasted the same so I had little appetite. And I had headaches almost every day. I was able to continue working as an accountant 30 hours a week and keep up with the regular routines as a wife and mother of two kids who were 6 and 8. Some days were better than others but over all it was tolerable.

Like Brian, I went to work in the morning during the high dose phase. My doctor's office was just down the street from my office so it was super convenient to run over when I needed to. I did not get a port but had a PICC line. That was great as they could use it for the drug and the blood work. My veins really suck so getting it in wasn't that pleasant but it kept me from having to go through the hassle every single day of finding a vein that would cooperate. 

I totally agree with the comment regarding the mental side effects. I was NOT on antidepressants during the year but went on them when I finished. Looking back, I believe it may have been helpful had a been on them during the treatment.

I would like to note that I have been NED which calculates to over 13 years since the end of my treatment! I have not had a reoccurrence or any additional problems! Was it the node dissection? Was it Interferon? I don't know nor do I care. I just want to keep my NED status!

As Brian pointed out, there will be people who feel they need to give you their "opinion" on Interferon. A lot of them will want to quote studies or articles. I would love it if people only give their "opinion" if they or a close loved one have gone through the treatment. Without the personal experience, an "opinion" is no more than a guess of how a person think it works. I have known people like me who have gone through the treatment just fine. I also know people that have been completely bed ridden during the treatment. Some it has helped. Others it has not. It is a personal decision. If there are no other good options for someone, I also suggest to give Interferon a try. 

One other thing to keep in mind with the board, a lot of people that have been NED for long amounts of time no longer frequent the board. They have gone on with their busy lives and don't contribute as much. Because of this, you can't really get a good sense for how many people any treatment has actually helped or how long they have been NED. The people that are still fighting and need support or have questions make up the majority of the board. I have been active on the board since my dx and as a past board member of MRF from 2003 – 2013 feel compelled to stay involved to provide help when I can.

My last piece of advice is once you have chosen a treatment, stand behind it 110%. Don't play the "would of, could of, should of" game. You never win!

You are welcome to email directly if there is anything else I might be able to help [email protected]. Best of luck!

Take care!

Cara 

Interferon has a number of nasty side effects, that are described on the following link: http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/interferons-alfa

As to whether or not to go on this treatment is a personal decision. But here's what I've learned from reading peoples' experiences:

* It is not a cure.

* Some folks never finish the treatment due to the severity of the side effects.

* Others are able to carry on and finish treatment and have not regretted their decision.

* There's no way to predict how your body will react to it.

* Some have remained NED for years while others have progressed to Stage IV.

* Some people don't want to spend a year feeling sick and choose other options.

* Overall, it has a very low efficacy rate.

* It is being used less and less due to its toxicity and low efficacy rate.

My recommendation would be to make sure you are being seen by a melanoma specialist at the major hospital with a department devoted to melanoma — someplace like Johns Hopkins, MD Anderson, Dana Farber, Moffitt, Abramson, etc, The doctors at these places are going to be the most up to speed on the latest treatment developments. If you're not being seen at a major melanoma center, it would be worth your while to seek a second opinion at one of these places.

Interferon has a number of nasty side effects, that are described on the following link: http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/interferons-alfa

As to whether or not to go on this treatment is a personal decision. But here's what I've learned from reading peoples' experiences:

* It is not a cure.

* Some folks never finish the treatment due to the severity of the side effects.

* Others are able to carry on and finish treatment and have not regretted their decision.

* There's no way to predict how your body will react to it.

* Some have remained NED for years while others have progressed to Stage IV.

* Some people don't want to spend a year feeling sick and choose other options.

* Overall, it has a very low efficacy rate.

* It is being used less and less due to its toxicity and low efficacy rate.

My recommendation would be to make sure you are being seen by a melanoma specialist at the major hospital with a department devoted to melanoma — someplace like Johns Hopkins, MD Anderson, Dana Farber, Moffitt, Abramson, etc, The doctors at these places are going to be the most up to speed on the latest treatment developments. If you're not being seen at a major melanoma center, it would be worth your while to seek a second opinion at one of these places.

Interferon has a number of nasty side effects, that are described on the following link: http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/interferons-alfa

As to whether or not to go on this treatment is a personal decision. But here's what I've learned from reading peoples' experiences:

* It is not a cure.

* Some folks never finish the treatment due to the severity of the side effects.

* Others are able to carry on and finish treatment and have not regretted their decision.

* There's no way to predict how your body will react to it.

* Some have remained NED for years while others have progressed to Stage IV.

* Some people don't want to spend a year feeling sick and choose other options.

* Overall, it has a very low efficacy rate.

* It is being used less and less due to its toxicity and low efficacy rate.

My recommendation would be to make sure you are being seen by a melanoma specialist at the major hospital with a department devoted to melanoma — someplace like Johns Hopkins, MD Anderson, Dana Farber, Moffitt, Abramson, etc, The doctors at these places are going to be the most up to speed on the latest treatment developments. If you're not being seen at a major melanoma center, it would be worth your while to seek a second opinion at one of these places.

This is such a hard question to answer, because everyone's response is so different!!! 

For example… I see a melanoma specialist that does a lot of interferon.  There was a group of about 8 people that stated HD interferon on the same day.  At this time, I was 29 and very health (except for the melanoma).  Sitting next to me was a man who I think was 65 and of average health (in his own words).  The man went to work every day during the HD induction phase, and said he was "mostly fine as long as he didn't do manual labor."  I, on the other hand, would get fevers up to 105, severe body pains, and was virtually bed ridden.  

I am currently 9 months into interferon.  I still get fevers with every injection.  I have been told this is not really normal though, and that I am having a more severe reaction than most.  When getting blood work done a while back, a woman getting a blood draw at the same time as me told me she was just in Europe for a week (she was 7 months in)!!! I couldn't even imagine doing that. In fact, I had to cancel/post-pone my wedding 🙁

I agree with other's comments about the mental part of interferon.  A year is a long time!  Being sick for that long can mess with anyone's head!  I am not taking any meds for that, but I def have days where I would benefit from something. 

Regarding a port, I also agree with above comments… I think a port is a bit excessive.  I would only get it if have absolutely need it… and very few do for this treatment.  I have supposedly "skinny" veins and could only have the pic in my left arm.  The nurses had a very hard time getting my pic line in, but they always were able to get it.  

I'm glad I'm doing interferon, even though it has made me so sick. You have to make a decision for your self, and then don't look back.   Just to warn you, I find there is a lot of negativity towards interferon on this board.  Do what your gut tells you, and good luck!!!!!

This is such a hard question to answer, because everyone's response is so different!!! 

For example… I see a melanoma specialist that does a lot of interferon.  There was a group of about 8 people that stated HD interferon on the same day.  At this time, I was 29 and very health (except for the melanoma).  Sitting next to me was a man who I think was 65 and of average health (in his own words).  The man went to work every day during the HD induction phase, and said he was "mostly fine as long as he didn't do manual labor."  I, on the other hand, would get fevers up to 105, severe body pains, and was virtually bed ridden.  

I am currently 9 months into interferon.  I still get fevers with every injection.  I have been told this is not really normal though, and that I am having a more severe reaction than most.  When getting blood work done a while back, a woman getting a blood draw at the same time as me told me she was just in Europe for a week (she was 7 months in)!!! I couldn't even imagine doing that. In fact, I had to cancel/post-pone my wedding 🙁

I agree with other's comments about the mental part of interferon.  A year is a long time!  Being sick for that long can mess with anyone's head!  I am not taking any meds for that, but I def have days where I would benefit from something. 

Regarding a port, I also agree with above comments… I think a port is a bit excessive.  I would only get it if have absolutely need it… and very few do for this treatment.  I have supposedly "skinny" veins and could only have the pic in my left arm.  The nurses had a very hard time getting my pic line in, but they always were able to get it.  

I'm glad I'm doing interferon, even though it has made me so sick. You have to make a decision for your self, and then don't look back.   Just to warn you, I find there is a lot of negativity towards interferon on this board.  Do what your gut tells you, and good luck!!!!!

This is such a hard question to answer, because everyone's response is so different!!! 

For example… I see a melanoma specialist that does a lot of interferon.  There was a group of about 8 people that stated HD interferon on the same day.  At this time, I was 29 and very health (except for the melanoma).  Sitting next to me was a man who I think was 65 and of average health (in his own words).  The man went to work every day during the HD induction phase, and said he was "mostly fine as long as he didn't do manual labor."  I, on the other hand, would get fevers up to 105, severe body pains, and was virtually bed ridden.  

I am currently 9 months into interferon.  I still get fevers with every injection.  I have been told this is not really normal though, and that I am having a more severe reaction than most.  When getting blood work done a while back, a woman getting a blood draw at the same time as me told me she was just in Europe for a week (she was 7 months in)!!! I couldn't even imagine doing that. In fact, I had to cancel/post-pone my wedding 🙁

I agree with other's comments about the mental part of interferon.  A year is a long time!  Being sick for that long can mess with anyone's head!  I am not taking any meds for that, but I def have days where I would benefit from something. 

Regarding a port, I also agree with above comments… I think a port is a bit excessive.  I would only get it if have absolutely need it… and very few do for this treatment.  I have supposedly "skinny" veins and could only have the pic in my left arm.  The nurses had a very hard time getting my pic line in, but they always were able to get it.  

I'm glad I'm doing interferon, even though it has made me so sick. You have to make a decision for your self, and then don't look back.   Just to warn you, I find there is a lot of negativity towards interferon on this board.  Do what your gut tells you, and good luck!!!!!

Hi K-Miles, best of luck with the planning!  One thought about pick or port is research at the Ottawa General where I get my treatments found for people that are physically active run a higher risk of getting blood clots. I like to ride my mountain bike and lift weights so that ruled out that choice for me on my present trial  of Immunotherapy drugs. Spring of 2012 I did one month of high dose Interferon and by day two they had a hard time finding a good vein. I kind of started feeling like a pin cushion by the end of the week. Many people get dehydrated from the treatments and this makes finding a good vein a bit sporty for some. I think stage 3 really sucks do to the lack of choices, mine was do Interferon or do nothing. The stats on Interferon making a difference aren't great but doing nothing is kind of hard to do. Last point that I will make is don't plan on doing other things during the high dose phase. You might be one of the luck ones who handle the drug with little side effects. Or you might have an experience like I had where I needed to be helped out of the car by day 3.   Best of luck!!! Ed

Hi K-Miles, best of luck with the planning!  One thought about pick or port is research at the Ottawa General where I get my treatments found for people that are physically active run a higher risk of getting blood clots. I like to ride my mountain bike and lift weights so that ruled out that choice for me on my present trial  of Immunotherapy drugs. Spring of 2012 I did one month of high dose Interferon and by day two they had a hard time finding a good vein. I kind of started feeling like a pin cushion by the end of the week. Many people get dehydrated from the treatments and this makes finding a good vein a bit sporty for some. I think stage 3 really sucks do to the lack of choices, mine was do Interferon or do nothing. The stats on Interferon making a difference aren't great but doing nothing is kind of hard to do. Last point that I will make is don't plan on doing other things during the high dose phase. You might be one of the luck ones who handle the drug with little side effects. Or you might have an experience like I had where I needed to be helped out of the car by day 3.   Best of luck!!! Ed

Hi K-Miles, best of luck with the planning!  One thought about pick or port is research at the Ottawa General where I get my treatments found for people that are physically active run a higher risk of getting blood clots. I like to ride my mountain bike and lift weights so that ruled out that choice for me on my present trial  of Immunotherapy drugs. Spring of 2012 I did one month of high dose Interferon and by day two they had a hard time finding a good vein. I kind of started feeling like a pin cushion by the end of the week. Many people get dehydrated from the treatments and this makes finding a good vein a bit sporty for some. I think stage 3 really sucks do to the lack of choices, mine was do Interferon or do nothing. The stats on Interferon making a difference aren't great but doing nothing is kind of hard to do. Last point that I will make is don't plan on doing other things during the high dose phase. You might be one of the luck ones who handle the drug with little side effects. Or you might have an experience like I had where I needed to be helped out of the car by day 3.   Best of luck!!! Ed

On that note…. make sure to drink TONS of water, like at least a gallon a day, and fresh juice, it really helps! Honestly, the meds give really bad dry mouth so i have no problem drinking that mich. If you get a pic line, make sure they flush it with heprin (sp?) after each infusion… if they do it properly, you may only need to get stuck once per week. The nurse will wrap the pic with gauze and coban to protect it when you are out of the hospital, and then pull it on Friday so you are free for the weekend. I’m pretty sure mine lasted all week twice, and twice had to be redone on Wednesday, so a total of 6 pic lines in 4 weeks.

On that note…. make sure to drink TONS of water, like at least a gallon a day, and fresh juice, it really helps! Honestly, the meds give really bad dry mouth so i have no problem drinking that mich. If you get a pic line, make sure they flush it with heprin (sp?) after each infusion… if they do it properly, you may only need to get stuck once per week. The nurse will wrap the pic with gauze and coban to protect it when you are out of the hospital, and then pull it on Friday so you are free for the weekend. I’m pretty sure mine lasted all week twice, and twice had to be redone on Wednesday, so a total of 6 pic lines in 4 weeks.

On that note…. make sure to drink TONS of water, like at least a gallon a day, and fresh juice, it really helps! Honestly, the meds give really bad dry mouth so i have no problem drinking that mich. If you get a pic line, make sure they flush it with heprin (sp?) after each infusion… if they do it properly, you may only need to get stuck once per week. The nurse will wrap the pic with gauze and coban to protect it when you are out of the hospital, and then pull it on Friday so you are free for the weekend. I’m pretty sure mine lasted all week twice, and twice had to be redone on Wednesday, so a total of 6 pic lines in 4 weeks.

There is no good reason to do interferon despite what some posters might say about their experience.

The research just doesnt support it and that is the final word.

Everything else is just a lot of guff.

Doing a very toxic therapy that has no value is just plain crazy.

 

There is no good reason to do interferon despite what some posters might say about their experience.

The research just doesnt support it and that is the final word.

Everything else is just a lot of guff.

Doing a very toxic therapy that has no value is just plain crazy.

 

There is no good reason to do interferon despite what some posters might say about their experience.

The research just doesnt support it and that is the final word.

Everything else is just a lot of guff.

Doing a very toxic therapy that has no value is just plain crazy.

 

Hello all,

I understand all of the research about interferon and I myself was told by my Sloan Kettering doctor that I definitely should not pursue it, based on the same research that was posted above. He also suggested not doing the node dissection because my node was micro positive, but he said he might feel differently if the node had been more positive. His reasons for not doing the node dissection were similar to the reasons for not doing interferon, basically that it doesn't improve OS. 

I was wondering if interferon is being prescribed by any of the melanoma specialist hospitals. Have any of you been given interferon by the "big" hospitals? If so, I'm wondering these hospitals could be so different in their approach. Ugh! How is anybody ever supposed to know the "right" answer?

This is the article I read that helped me sort it out for myself: 

http://theoncologist.alphamedpress.org/content/10/9/739.full

I agree with the above posters who have said we all have to make the decisions we're going to make and then we need to stand by them. Second guessing ourselves is complete torture, and there are so few clear answers. 

Best, 

Elaine

 

Hello all,

I understand all of the research about interferon and I myself was told by my Sloan Kettering doctor that I definitely should not pursue it, based on the same research that was posted above. He also suggested not doing the node dissection because my node was micro positive, but he said he might feel differently if the node had been more positive. His reasons for not doing the node dissection were similar to the reasons for not doing interferon, basically that it doesn't improve OS. 

I was wondering if interferon is being prescribed by any of the melanoma specialist hospitals. Have any of you been given interferon by the "big" hospitals? If so, I'm wondering these hospitals could be so different in their approach. Ugh! How is anybody ever supposed to know the "right" answer?

This is the article I read that helped me sort it out for myself: 

http://theoncologist.alphamedpress.org/content/10/9/739.full

I agree with the above posters who have said we all have to make the decisions we're going to make and then we need to stand by them. Second guessing ourselves is complete torture, and there are so few clear answers. 

Best, 

Elaine

 

Hello all,

I understand all of the research about interferon and I myself was told by my Sloan Kettering doctor that I definitely should not pursue it, based on the same research that was posted above. He also suggested not doing the node dissection because my node was micro positive, but he said he might feel differently if the node had been more positive. His reasons for not doing the node dissection were similar to the reasons for not doing interferon, basically that it doesn't improve OS. 

I was wondering if interferon is being prescribed by any of the melanoma specialist hospitals. Have any of you been given interferon by the "big" hospitals? If so, I'm wondering these hospitals could be so different in their approach. Ugh! How is anybody ever supposed to know the "right" answer?

This is the article I read that helped me sort it out for myself: 

http://theoncologist.alphamedpress.org/content/10/9/739.full

I agree with the above posters who have said we all have to make the decisions we're going to make and then we need to stand by them. Second guessing ourselves is complete torture, and there are so few clear answers. 

Best, 

Elaine

 

Do not listen to all the negative comments. It is YOUR choice overall. I’m 19 and diagnosed with stage 3. I’m on month 5 and I have had no side effects if I take advil before hand, even when I did it 5 times a week for the first month. I’m able to work, go to the gym, eat normally. There are people that take it and have little to no side effects, and I’m one of them. I also know a lot of people who are NED now and did Interferon. Do not let people influence your choice. Do what you feel is right for you, and best for you.

Do not listen to all the negative comments. It is YOUR choice overall. I’m 19 and diagnosed with stage 3. I’m on month 5 and I have had no side effects if I take advil before hand, even when I did it 5 times a week for the first month. I’m able to work, go to the gym, eat normally. There are people that take it and have little to no side effects, and I’m one of them. I also know a lot of people who are NED now and did Interferon. Do not let people influence your choice. Do what you feel is right for you, and best for you.

Do not listen to all the negative comments. It is YOUR choice overall. I’m 19 and diagnosed with stage 3. I’m on month 5 and I have had no side effects if I take advil before hand, even when I did it 5 times a week for the first month. I’m able to work, go to the gym, eat normally. There are people that take it and have little to no side effects, and I’m one of them. I also know a lot of people who are NED now and did Interferon. Do not let people influence your choice. Do what you feel is right for you, and best for you.