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Lynn,

Sorry to hear of your diagnosis, but welcome to the site where you can get lots of good information and support from others who've been there.

The choice of whether to do interferon or not and if so, what type, is very personal and you will hear some very diverse views on it.  Just to give you my experience with it so far:  I chose to do a 6 month trial of pegylated interferon back in September and am 6 weeks away from finishing it.  My side-effects have not been too bad overall, mainly fatigue and some headaches.  I am now just starting to have some thyroid issues, but I have been able to work and travel (I travel quite a bit for work) througout. 

My thought to you would be that you can always stop the treatment if the effects on you are too bad.  Interferon affects everyone differently and since you are still young and healthy, you may not experience very many bad side-effects.  And if it starts affecting your lifestyle too badly, just stop.  You may also want to see if there are any alternatives to the 5-year peg plan, as there may be possibilities to do it for less time.

But in any case, it's you who need to be comfortable with the decision. I wish you the best in making the one that will work for you and hope all goes well for you.

Elisa

Lynn,

Sorry to hear of your diagnosis, but welcome to the site where you can get lots of good information and support from others who've been there.

The choice of whether to do interferon or not and if so, what type, is very personal and you will hear some very diverse views on it.  Just to give you my experience with it so far:  I chose to do a 6 month trial of pegylated interferon back in September and am 6 weeks away from finishing it.  My side-effects have not been too bad overall, mainly fatigue and some headaches.  I am now just starting to have some thyroid issues, but I have been able to work and travel (I travel quite a bit for work) througout. 

My thought to you would be that you can always stop the treatment if the effects on you are too bad.  Interferon affects everyone differently and since you are still young and healthy, you may not experience very many bad side-effects.  And if it starts affecting your lifestyle too badly, just stop.  You may also want to see if there are any alternatives to the 5-year peg plan, as there may be possibilities to do it for less time.

But in any case, it's you who need to be comfortable with the decision. I wish you the best in making the one that will work for you and hope all goes well for you.

Elisa

Lynn,

Sorry to hear of your diagnosis, but welcome to the site where you can get lots of good information and support from others who've been there.

The choice of whether to do interferon or not and if so, what type, is very personal and you will hear some very diverse views on it.  Just to give you my experience with it so far:  I chose to do a 6 month trial of pegylated interferon back in September and am 6 weeks away from finishing it.  My side-effects have not been too bad overall, mainly fatigue and some headaches.  I am now just starting to have some thyroid issues, but I have been able to work and travel (I travel quite a bit for work) througout. 

My thought to you would be that you can always stop the treatment if the effects on you are too bad.  Interferon affects everyone differently and since you are still young and healthy, you may not experience very many bad side-effects.  And if it starts affecting your lifestyle too badly, just stop.  You may also want to see if there are any alternatives to the 5-year peg plan, as there may be possibilities to do it for less time.

But in any case, it's you who need to be comfortable with the decision. I wish you the best in making the one that will work for you and hope all goes well for you.

Elisa

Jim,

I'm in Houston, not in Tulsa, but I thought I would say hi anyway and wish you the best on your treatment.  I've been on Peginterferon since beginning of September and it's starting to wear me down some.  Mainly fatigue and some dizziness.  So far I've been able to continue working without too much trouble, but I'm worried that might change over the coming weeks.

I hope you find some local support for yourself, and that you can stay positive about this fight.  Feel free to share your situation and questions, if you like.  It's nice to know there are others out there going through something similar.

Best wishes,

Elisa

Jim,

I'm in Houston, not in Tulsa, but I thought I would say hi anyway and wish you the best on your treatment.  I've been on Peginterferon since beginning of September and it's starting to wear me down some.  Mainly fatigue and some dizziness.  So far I've been able to continue working without too much trouble, but I'm worried that might change over the coming weeks.

I hope you find some local support for yourself, and that you can stay positive about this fight.  Feel free to share your situation and questions, if you like.  It's nice to know there are others out there going through something similar.

Best wishes,

Elisa

Jim,

I'm in Houston, not in Tulsa, but I thought I would say hi anyway and wish you the best on your treatment.  I've been on Peginterferon since beginning of September and it's starting to wear me down some.  Mainly fatigue and some dizziness.  So far I've been able to continue working without too much trouble, but I'm worried that might change over the coming weeks.

I hope you find some local support for yourself, and that you can stay positive about this fight.  Feel free to share your situation and questions, if you like.  It's nice to know there are others out there going through something similar.

Best wishes,

Elisa

Denise,

I'm stage 2b as well and have been taking Peg-Interferon on a clinical trial since September.  You may want to investigate Peg-Intron as an alternative to the regular interferon therapy, as there are fewer injections and the side-effects for some are reportedly less.  Some research results have indicated that interferon/Peg-intron is especially effective for earlier stage ulcerated melanomas, and that is why additional trials are being carried out using it.

You're right to arm yourself with all the information you can to help make your decision.  Good luck in your fight and wishing you the best.

Elisa

Denise,

I'm stage 2b as well and have been taking Peg-Interferon on a clinical trial since September.  You may want to investigate Peg-Intron as an alternative to the regular interferon therapy, as there are fewer injections and the side-effects for some are reportedly less.  Some research results have indicated that interferon/Peg-intron is especially effective for earlier stage ulcerated melanomas, and that is why additional trials are being carried out using it.

You're right to arm yourself with all the information you can to help make your decision.  Good luck in your fight and wishing you the best.

Elisa

Denise,

I'm stage 2b as well and have been taking Peg-Interferon on a clinical trial since September.  You may want to investigate Peg-Intron as an alternative to the regular interferon therapy, as there are fewer injections and the side-effects for some are reportedly less.  Some research results have indicated that interferon/Peg-intron is especially effective for earlier stage ulcerated melanomas, and that is why additional trials are being carried out using it.

You're right to arm yourself with all the information you can to help make your decision.  Good luck in your fight and wishing you the best.

Elisa

Here's an attempt at posting the link again, with the website listed fully at the beginning.  Hope this helps those who want to access:

http://www.oeci-amsterdam2011.com/pdf/OECI%20symposium%20June%202011%20J%20Haanen.pdf

Here's an attempt at posting the link again, with the website listed fully at the beginning.  Hope this helps those who want to access:

http://www.oeci-amsterdam2011.com/pdf/OECI%20symposium%20June%202011%20J%20Haanen.pdf

Here's an attempt at posting the link again, with the website listed fully at the beginning.  Hope this helps those who want to access:

http://www.oeci-amsterdam2011.com/pdf/OECI%20symposium%20June%202011%20J%20Haanen.pdf

For me the biggest inputs into making your choice would be to know your alternatives.  So if you really want ipi, are there other options for you to be able to get that treatment for your child?  What were the main reasons for choosing not to do interferon and would you reconsider if that were the only option?  If you get the 'wrong' arm of the trial and decide to drop out, what's the plan for next steps?  And would the fact that you dropped out affect your possible options thereafter?

Sorry to answer questions with questions, but those would be the questions I would make sure I'd explored before making the choice of what was the 'right' thing to do in your situation.  And framing it as right or wrong is probably not really relevant anyhow, because all of this is gray in my opinion and each new piece of information changes everything again.  You do what you believe is right for your child given the knowledge and priorities you have right now.  Just make sure you've explored all the alternative options as much as possible before making that choice.  And then don't look back, because hindsight is never the same.

In principle I believe in clinical trials (I'm on one myself) and what they do to help advance medical knowledge.  But when it comes down to the treatment undergone by you or your child and the way that affects your very personal future, it's not always possible or even desirable to stick with principles.

Just my two cents worth, since you asked for opinions.  But what do I really know??

Best of luck to you and your child, whatever you decide to do.

Elisa

For me the biggest inputs into making your choice would be to know your alternatives.  So if you really want ipi, are there other options for you to be able to get that treatment for your child?  What were the main reasons for choosing not to do interferon and would you reconsider if that were the only option?  If you get the 'wrong' arm of the trial and decide to drop out, what's the plan for next steps?  And would the fact that you dropped out affect your possible options thereafter?

Sorry to answer questions with questions, but those would be the questions I would make sure I'd explored before making the choice of what was the 'right' thing to do in your situation.  And framing it as right or wrong is probably not really relevant anyhow, because all of this is gray in my opinion and each new piece of information changes everything again.  You do what you believe is right for your child given the knowledge and priorities you have right now.  Just make sure you've explored all the alternative options as much as possible before making that choice.  And then don't look back, because hindsight is never the same.

In principle I believe in clinical trials (I'm on one myself) and what they do to help advance medical knowledge.  But when it comes down to the treatment undergone by you or your child and the way that affects your very personal future, it's not always possible or even desirable to stick with principles.

Just my two cents worth, since you asked for opinions.  But what do I really know??

Best of luck to you and your child, whatever you decide to do.

Elisa

For me the biggest inputs into making your choice would be to know your alternatives.  So if you really want ipi, are there other options for you to be able to get that treatment for your child?  What were the main reasons for choosing not to do interferon and would you reconsider if that were the only option?  If you get the 'wrong' arm of the trial and decide to drop out, what's the plan for next steps?  And would the fact that you dropped out affect your possible options thereafter?

Sorry to answer questions with questions, but those would be the questions I would make sure I'd explored before making the choice of what was the 'right' thing to do in your situation.  And framing it as right or wrong is probably not really relevant anyhow, because all of this is gray in my opinion and each new piece of information changes everything again.  You do what you believe is right for your child given the knowledge and priorities you have right now.  Just make sure you've explored all the alternative options as much as possible before making that choice.  And then don't look back, because hindsight is never the same.

In principle I believe in clinical trials (I'm on one myself) and what they do to help advance medical knowledge.  But when it comes down to the treatment undergone by you or your child and the way that affects your very personal future, it's not always possible or even desirable to stick with principles.

Just my two cents worth, since you asked for opinions.  But what do I really know??

Best of luck to you and your child, whatever you decide to do.

Elisa